joint and muscle pain
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Topic: joint and muscle pain
Posted By: Donna
Subject: joint and muscle pain
Date Posted: Aug 09 2007 at 3:25pm
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Hi I'm new I'm 47 I was diagnosed last 8/25/06 with triple neg metastatic carcinoma of the left breast and had 2 nodes with 25% found to be cancerous.
I have gone through 8 rounds of chemo, which was ac and then taxotere. I've been in remission since 6/25/07, but now have continous joint and muscle pain. I've had tests done to make sure it wasn't cancer again and everything looks good. But the pain is getting worse. has anyone else gone through this since coming off of chemo.
My husband found this web site for me, I was very depressed until he found it. hope to hear from others who share this ugly cancer also. Until then take care .
Love a new friend,
Donna
 ------------- Donna |
Replies:
Posted By: trip2
Date Posted: Aug 13 2007 at 9:31am
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Oh dear Donna welcome and I'm so sorry you are having problems after your treatments were finished.
I'm not sure why you are still hurting but I know it can take some time for all of the chemo to get out of your body. I have read some women say they have a hard time for quite some time from the side effects and others are not bothered too much.
That's good to hear the tests done looked good for no cancer!
Have you spoken with your Oncologist about what is going on? There is no reason for you to be in pain. If they feel it has nothing to do w/the chemo side effects maybe they can refer you to someone that can help.
Hope you'll let us know how it's going for you. Do you have pain meds?
Best wishes ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Vicki G
Date Posted: Aug 13 2007 at 1:01pm
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Hi Donna,
Have you had a bone density test yet? I found out recently that I have Osteoporosis!! I was in total shock when I heard that news! But thanks to chemo and menopause, I do have it!! I was having a lot of joint pain too. It wasn't getting any worse, it just didn't get any better. Bone scans all came out okay too. I'd call your Onc or primary physician and get a dexi-scan. It's quick and painless and results are fast. I'm currently taking a TON of vitamins before we proceed with any other meds for it and I've started walking everyday. That seems to have helped. Good luck! Take care, Vicki ------------- Lb Lumpectomy, IDC, Stage 2, Grade 3, 1+ node, 4 x A/C, 4 x Taxol, 33 x Rads. NED almost 4 yrs. Los Angeles, Ca. |
Posted By: Donna
Date Posted: Aug 14 2007 at 9:30am
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Hey Pam and Vicki, Thank you I called my dr. to set up and appt. for the scan, I'm currently taking hydrocodone 325 and advil for the pain and they also have me on valium. Before this I never took anything except for tylenol once in awhile. Hope to here back from you all soon. Thanks again,
Donna
Stage 3
Grade2b ------------- Donna |
Posted By: trip2
Date Posted: Aug 14 2007 at 10:54am
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Donna, I'm so glad you've made an appointment. Now you can find out what is going on and get it fixed or medicated, whatever it takes.
I know, having cancer sure changes everything including taking pills and having residuals from the chemo and rads, dealing with that. Hopefully you can learn something from the scan and get on w/your life.
Keep us posted! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: BeeCee
Date Posted: Aug 26 2007 at 6:31pm
Hi Donna, I just joined this forum today and yours is the first post I read and I was shocked to see that you have exactly the same thing going on as me. I was dx 8/7/06 with IDC, stage 1, grade 3, triple neg, 8 nodes neg. I had 4 x AC and 4 x Taxotere and 33 rads. I have had back pain for years, but managed to keep it under control until Dec when I had my first Taxotere. Since then, I have been in varying degrees of pain in back, hips, knees, fingers and toes. But in the last few months, the pain in my back and hips has become almost unbearable at times. I take Neurontin (which doesn't help) and ibuprofen (which does). I'm trying to be patient and treat this like a side effect that will get better. But I'm aware that some of the side effects from Taxotere are permanent and this may be one of them. I do have osteoporosis (there are no symptoms of this until you fracture a bone) and have been on Actonel for about 3 years. I'm older than you, 63, and you are young to have osteoporosis. But, steroids cause bone loss and you had a lot of IV as well as oral steroids with chemo. Also, did you take Nexium or Prilosec for stomach problems during your treatment? If so, that kept you from absorbing any calcium supplements you might have been taking. I had to quit my Actonel while I was doing chemo, but I'm back on it now and taking 2 calcium tabs a day and I stopped taking Prilosec. Sorry this is so long. I hope this helps you some and I hope to see answers to your post that will help me as well. I had my mammo 8/9 and it was all clear. Thank God! I am praying that we are both done with this pain soon so we can get on with living.
Hugs to you, Bonnie 
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Posted By: trip2
Date Posted: Aug 29 2007 at 11:45am
Congratulations on a clear mammo Bonnie! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Donna
Date Posted: Sep 08 2007 at 6:34pm
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Hi everyone, been awhile since I was on, not sure yet but worried I may be out of remission, I'm having constant fluish like aches and temp. is staying below norm. Which my Dr. says could just be a coincidence, also fighting w/ my insur. comp. about my 2nd mast. , cause I also have lypmh nodes enlarged under that arm and around the rt. breast. I'm really scared. I want to help my husband and my kids w/ this but can't even help my self. Still learning so much about this cancer, and myself.
I want to take that 60 mile walk next year w/ my wonderful 18 year old son , He says mama remember you promised to not give up and let this beat you, like it did (granny) my mom. Please someone give me some much needed advice about staying positive. I'm really scared now, I thought I was really strong I'm not.
  Donna
Stage 3 2b
------------- Donna |
Posted By: Ronda
Date Posted: Sep 08 2007 at 7:10pm
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Hi Gals,
It's me, the vitamin freak again here to talk about vitamin D deficencies. I posted a site that talks about body aches. I was very deficient at the time of DX and have gradually built my levels up to almost normal levels, but its taken 4 mos. now. D deficiencies have also been linked to BC. Any chance of having your blood levels tested by your onc. or primary care md? Don't settle for the "you have normal levels", get a number reading you want to be around 50-55. The feds are getting ready to raise the daily requirements on this vitamin. Let me know if you'd like more info.
http://www1.umn.edu/umnnews/Feature_Stories/Pain_linked_to_vitamin_D_deficiency.html - http://www1.umn.edu/umnnews/Feature_Stories/Pain_linked_to_vitamin_D_deficiency.html
Ronda
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Posted By: Nancy
Date Posted: Sep 09 2007 at 9:08am
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Hi Ronda,
Just me..Nancy.
Did you have severe joint pain going through chemo? Last evening when I posted I had just spoken with Lori and she was in severe joint pain. She thinks it is from the Neulasta, but is going to call her onc tomorrow. She is definitely going to discuss supplements with him. She said that it has been so severe that she can't even meditate. I did post about her weight loss. She said that she bought a pair of slacks, size 0 and they are too big. Oh, I am so worried. Some times I think that maybe she should have gone to the Cancer Center in Philadelphia. Perhaps they are more progressive and would have looked at supplements. I wonder if anyone on this site goes to one of their centers for treatment. I so appreciate all the info you have given to everyone.
Someone had posted an article that was looking at chemo every 2 weeks instead of 3. I don't know how anyone gets through every 3 weeks. For over a week Lori is battling fatigue, joint pain and many other horrible side effects. Then she has maybe 2 fairly good weeks, and back to chemo. How in the world could anyone have chemo every 2 weeks? It would put you out of commission for the entire therapy!
 For women who must care for their children, are single moms, and must go to their jobs, it would be impossible!You are not a vitamin freak. You are looking out for your own well being, and quite apparently others as well. If we don't take control of our own bodies, no one else will.
Thanks again Ronda,
Hugs,
Nancy
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Posted By: Ronda
Date Posted: Sep 09 2007 at 6:11pm
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Hi Nancy,
I did chemo every 2 weeks and felt pretty normal the 2nd week of each treatment. I think the liver support is important to help get rid of those toxins quickly after they've done their job.
I did have bone pain, it's caused because your bones are producing white blood cells. Mine was mostly in my hips. I described it like a symphony of aches, each body part throbbed at a different rhythm. They tried to give me steroids but I didn't take 'em. I pretty much roughed it out, but at one point took a Vicodine cause it was driving me crazy.
The sublingual B12 really helps with fatigue/anemia, I'd also have her D levels checked. My fatigue before chemo was so great I postponed it for two weeks to get healthier. The D3 really helped me alot with fatique prior to chemo. I also had anemia ( I actually had it before chemo) so they gave me a couple of shots for red blood cell production, but after I read the black box warning I opted not to get the last one. The B12 is good for blood building. Her onc may even give her some via IV if she asks.
Maybe you could find her a good whey protein powder to help with weight. I treated AC like I was pregnant... I GOT WHATEVER I WANTED!
and that happend to be hamburger and eggs in the morning and banana splits at night!
My naturopath worked at the Cancer Center in Illinois and a couple of other centers as well. It's too bad these oncs only sell what the phamacuetical companies are pushing. I can't believe we pay this much and go through all this crap to increase our chances a measley 15%. I can't think of anything I would invest in that only gave me that slim of a chance of winning, and yet here we are.
Your daughter is so tiny she may need to lay off the bike a bit. She needs to keep her energy and body weight up. The further into this she gets, the more she could develope anemia, she really needs to reserve her strength for healing after each treatment.
I hope Lori starts doing better.
Hugs
Ronda
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Posted By: woolie
Date Posted: Sep 10 2007 at 5:15am
| Hi , everyone I was diagnose 6/07 and have now finished 3 rounds of 6 of ACT. I ad very severe bone pain with my first dose of Neulasts but not as severe on the second. It is a natural response my MD told me beacuse it has the bone marrow jump started to make more white blood cells and platelets. You may have to find a pain med regime that works for you during this period I did find that deinking large amounts of water help.I was not a water drinker before this but now I force myself.God Blees all . |
Posted By: woolie
Date Posted: Sep 10 2007 at 5:16am
Hi , everyone I was diagnose 6/07 and have now finished 3 rounds of 6 of ACT. I ad very severe bone pain with my first dose of Neulasts but not as severe on the second. It is a natural response my MD told me beacuse it has the bone marrow jump started to make more white blood cells and platelets. You may have to find a pain med regime that works for you during this period I did find that deinking large amounts of water help.I was not a water drinker before this but now I force myself.God Bless all . 
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Posted By: 2kidzmom
Date Posted: Sep 10 2007 at 5:54am
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Welcome BeeCee and hello everyone,
I just turned 46 and I have the same dx as you do, ...stage 1, grade 3 triple neg IDC. I have been suffering from the joint and muscle pain also since about a month after my chemo ended (6 rounds of FEC). I've brought it up a few times to my oncologist but she doesn't seem to have much to say about it other than it may be due my chemo-induced menopause.
It seems to me that many of us are suffering these symptoms and yet there doesn't seem to be any straight answer for it. I worry...as I'm sure many of you do, that something could have spread to my bones. I'm thinking of pushing for a bone scan but I don't want to be paranoid either. My mother-in-law had BC 11 years ago and at that time they automatically gave bone scans to BC patients. I think that still should be part of the regime just to be sure.
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Posted By: woolie
Date Posted: Sep 10 2007 at 6:22am
| You can not be too paranoid when it comes to cancer. My own breast cancer literally popped up out of nowhere.By talking to alot of people that is how I found out about going for a PET scan and the only area that lit up was my breast where the tumor was sitting. So I was given a little reassurance even if it is only for now that was all they saw. |
Posted By: marathonmom
Date Posted: Sep 10 2007 at 8:36am
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I support Ronda with the vitamins. I also saw a naturopath who recommended vitamin D as well as B complex (rather than B12) to support liver fuction. My understanding is that if we have optimal liver function, we are able to easily get rid of all toxins that are in our system. And not only residuals from chemo but also anything present in the foods we eat....
Good luck!
Oana ------------- dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads Oct 2007 mets to lungs and brain |
Posted By: trip2
Date Posted: Sep 10 2007 at 9:38am
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Donna, are you feeling better today? Honey I think, I bet, we all have times when we feel scared and not strong. This will pass, please hold the faith and continue to stay on top of what is going on and fight w/that insurance company! We are our best advocate remember.
Let us know what you find out.
Having cancer can be so overwhelming and we being women worry about our families and it's hard to handle everything, we can't do it. Not right now. Try to go day by day or hour by hour. Maybe your doc can give you something mild to help with the feeling down?
You and your son will take that walk next year.
Big hugs to you and keep us posted ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Donna
Date Posted: Sep 10 2007 at 4:56pm
Hi pam feeling a little better today, the pain sometimes I guess makes me a little paranoid. had blood work done today because of the low grade fevers and the fluish aches and pains. guess i'll hear from that tomorrow, hopefully. My first cousin has her 2 pos. and she had her surgery last year along with chemo and rads, and was doing real well but has and infection on the side where the cancer was found last year. I wanted to go be with her in s. carolina but they said I cant right now because my white cell count is down a little. but hopefully after tomorrow I'll no something, I Know I will go on that walk some how, even if i have to wait till the following year. thanks again, hearing from all of you some how gives me a little energy to keep going each day, because even though we cant be actually together, none the less we are all in this together in many different ways, right
  Donna ------------- Donna |
Posted By: trip2
Date Posted: Sep 11 2007 at 8:31am
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Yes Donna, we are all in this together and we're here to support each other thru the good and bad.
I'm glad you're feeling a little better, that is a good thing.
I hope there is nothing serious that shows up in your blood work, let us know what you find out.
I can so understand your wanting to be with your cousin but this is a time when you must take care of yourself, especially with the low white blood count. I hope everything will be ok for her.
My daughter is having a hysterectomy Friday and I would so love to be with her. She lives out of State but I can't as I'm having chemo on Thursday. It is very frustrating but we've got to get ourselves well.
You hang in there and keep writing to us, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Sep 11 2007 at 3:32pm
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[QUOTE=marathonmom]I support Ronda with the vitamins. I also saw a naturopath who recommended vitamin D as well as B complex (rather than B12) to support liver fuction. My understanding is that if we have optimal liver function, we are able to easily get rid of all toxins that are in our system. And not only residuals from chemo but also anything present in the foods we eat....
B complex is GREAT but, as we age B 12 is hard to absorb in the gut so it's easy to become deficient even with an oral supplement (I just discovered this). Whats more is that STRESS is can suck the B12 right out of you, alcohol is another culprit. With the stress of our situations and our guts being affected by the chemo,a B12 deficiency is likely. I can tell you I felt a huge difference when I took the sublingual B12 with energy level and mental clarity!
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Posted By: Brenda
Date Posted: Sep 20 2007 at 5:21pm
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I just happened across this forum. I have been hoping for a place that fits me and my cancer better. This seems to. I am 3-. Diagnosed May 06. Stage III, 2 positive nodes. I was 46. I am a white upper middle class married mother of two daughters. Somehow that seems pertinent when talking about triple neg cancer. I had the works. Mastectomy, Dose Dense Chemo--thats every two weeks for eight treatments and 30 radiation burns. Then in Dec. I had my right breast removed because of signs that were close to those I had in the left. No cancer there--Thank God. I also just had double reconstruction in June 2007. It hurt so bad. Only one more surgery to go for that. I too am having pain in my joints. Mostly my hands, feet and knees. It is worse now than when i was on Chemo. Adriamyacyn, Cytoxan and Taxotere. I do not hurt in my feet when I am walking that is why it is so strange. But when I first get up from bed or sitting, I stumble. And stairs kill my knees. My hands just ache. I have been really positive until lately about all of this. Reading more about triple neg cancer is scary. My sister had the same when she was 32. She is an 11 year survivor. I do not have any suggestions for the pain, but would like to tell you Donna, that I know how scared you are. Maybe through this outlet you will find some reassurances and comfort. All the best, Brenda |
Posted By: woolie
Date Posted: Sep 21 2007 at 2:04am
 Dear Brenda : We have almost the same diagnosis , I was found to be Gr 3 with 2 positive nodes. I have been taking Tylenol for the aches and pains but I know exactly what you are talking about with the feet. They hurt when I first get out of bed so much that you stumble, same thing with my knees on a long car ride. I try to keep my Calcium up with supplemnents with Magnesium .Take good care of yourself . Julie
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Posted By: Nancy
Date Posted: Sep 21 2007 at 11:05am
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Hi Brenda,
May I ask what were the "signs" that you had in your right breast that were close to those that you had in your left breast?
Since your sister is 11 years away from dx, that has to be encouraging for you.
 I know that for my daughter Lori, that is encouraging for me. She is 45, white, upper middle class with 2 daughters and one son. There are so many young women being dx. I read an article, I believe from someone on this site, which stated that not 1 in 7, but 1 in 4 women will be diagnosed with bc in the US. Since we don't have what I believe to be up-to-date statistics on TNBC, I wonder what the % is of TNBC. Until Lori received that dx, I had never heard of TNBC.
What do the doctors tell you could be the cause of your joint pain? Or do they just dismiss it as "achiness"? Lori is at this moment receiving chemo. Last time, 8 days out from chemo, she experienced so much joint pain, that she thought she had a ruptured disc, and possibly a fractured hip.
Something happened and this posted without my knowledge
There has to be some med that you ladies can take that will alleviate this pain. I know you are taking supplements which are far better than another drug in your body. After chemo, you don't need any more toxic chemicals!
I just got an email from "Cure" magazine today and there are numerous articles which appeared to be of interest. Have only read one so far.
My thoughts go out to you Brenda, and every one on this site.
Hugs,
Nancy
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Posted By: woolie
Date Posted: Sep 21 2007 at 11:16am
| Dear Brenda : Some of the bone aches are from the Neulasta causing the bone marrow to increase production of white blood cells. Jules |
Posted By: Nancy
Date Posted: Sep 21 2007 at 11:47am
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Woolie,
Quick question. Do you take Neulasta even after you are finished with chemo? Or is this a residual effect from the neulasta for a long time? Brenda said that she was finished with chemo.
Thanks, Nancy
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Posted By: Brenda
Date Posted: Sep 21 2007 at 3:00pm
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I had 8 shots of Nuelasta, each one a day after my Chemo. That ended almost one year ago, so I do not think it is causing my joint pain now. This is different from the pain I had on Chemo. That was an all over ache like a very bad flu. My bones hurt so bad because they were working overtime rebuilding. This pain seems to have started this summer and is only in my feet, knees and hands. It is not debilitating like the chemo period was. I may need more vitamins and of course exercise will help too. My best guess is that I am developing arthritis earlier than I might have had I not had Cancer and treatments. I have not seen my oncologist about this yet. It is all so confusing. Brenda |
Posted By: woolie
Date Posted: Sep 21 2007 at 3:47pm
| Dear Brenda : I just read on the internet that women who have been treated for breast cancer have a faster rate of osteopenia ,a precursor to bone loss so it may pay to check with your MD for a bone density. JULES |
Posted By: woolie
Date Posted: Sep 21 2007 at 3:48pm
| Dear Nancy : I am still in the middle of chemo. JULES |
Posted By: Teresa J
Date Posted: Sep 21 2007 at 4:04pm
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Hi! I'm fairly new here too - I'm a 3-Neg. girl myself. FYI: I am on the mailing list for cancer research info. at caring4cancer.com I get emails weekly - that is how I discovered the high-risk factor of triple-negative status and immediately researched my pathology records for my hormone status - and discovered the day I had my port removed that I was 3-Negative. Anyway, the latest email just came in today about Osteoporosis and the drug called Evista. It is somewhat of a positive report that this drug actually helps osteoporosis and is known to prevent breast cancer in high-risk women! Here is the link: http://www.caring4cancer.com/go/cancer/news?NewsItemId=40518 They also talk about how chemotherapy is hard on our bones. http://www.caring4cancer.com/go/cancer/news?NewsItemId=20070919elin028.xml Just thought I should share - since these articles are right up your alley. Hope you feel better soon. Teresa J. Just Completed Rads 8/31/07 All done with treatment |
Posted By: Teresa J
Date Posted: Sep 21 2007 at 4:10pm
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Hi! I'm fairly new here too - I'm a 3-Neg. girl myself. FYI: I am on the mailing list for cancer research info. at caring4cancer.com I get emails weekly - that is how I discovered the high-risk factor of triple-negative status and immediately researched my pathology records for my hormone status - and discovered the day I had my port removed that I was 3-Negative. Anyway, the latest email just came in today about Osteoporosis and the drug called Evista. It is somewhat of a positive report that this drug actually helps osteoporosis and is known to prevent breast cancer in high-risk women! Here is the link: http://www.caring4cancer.com/ (click on CANCER INFORMATION at the top of the webpage) They also talk about how chemotherapy is hard on our bones. Just thought I should share - since these articles are right up your alley. Hope you feel better soon. Teresa J. Just Completed Rads 8/31/07 DX 2/21/06 Stage 1 Grade 3, 0 nodes Chemo T/C 4 rounds 36 rads Waiting for BRCA1/2 results |
Posted By: Ronda
Date Posted: Sep 24 2007 at 5:52am
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Hi Gals,
I'm back from Boston, What a cool city! I walked atleast five miles a day and had stiffness and achiness up untill the 4th day, then it was mild. My joints have been stiff and achy since my chemo (ac+t) in 8/07. Found out my aunt who was a 25 year triple negative survivor also had Lupus. Found out my grandmother had rheumatoid arthritis. Both diseases are similar in that the immune system mistakenly targets/attacks different parts of the body causing inflammation. Lupus is often treated with chemo.
I have read that many bc's occurs as a result of inflammation or changes in the breast (like injury, pregnancy, irritation) as a result the cells mutate and are fueled by estrogen (even the triple negatives according to new information).
"They" have also found women who were taking anti-inflammatories for other issues had lower bc rates.
So with painful joints again it sounds like an inflammation issue.
After reading up on on both diseases I learned the supplement MSM helps with joint/tissue health and repair. I'll be starting that this week and let you know the results.
Also an acidic system is supposed to make the pain worse. Foods to avoid are tomatoes, potatoes, egg plant (all are in the night shade family), coffee, sugar. We have been eating a sh*t load of tomatoes from our garden and my husband has also noticed his joints are aching.
There is also a supplement Zyflammend that is an herbal blend which also has many herbs recommended for tumor inhibitors, but is also an anti-imflammatory.
Well, it's back to the grind.
Ronda
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Posted By: Nancy
Date Posted: Sep 24 2007 at 6:10am
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Morning Ronda,
So good to have you back
Sooo. they tell you to eat all the foods rich in potassium for muscle cramps...potatoes, tomatoes.. and they are the acidic ones..which are bad for you...
 Lori also has been eating many tomatoes from her sister's garden. The old "catch 22"!!! I told her to eat potatoes for the leg cramps. OMG!!
Again, good to have you back and it sounds like you had a wonderful trip to Boston.
Hugs,
Nancy
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Posted By: Brenda
Date Posted: Sep 24 2007 at 7:27am
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Ronda and all: Thank you for the information. Now I have to ask about the following part of your e-mail from this morning. I have read that many bc's occurs as a result of inflammation or changes in the breast (like injury, pregnancy, irritation) as a result the cells mutate and are fueled by estrogen (even the triple negatives according to new information). I have felt for a long time that my BC might have been attributed to the fact that I had large cysts in my left breast --the one with cancer--drained every year for the past 4 years--before the cancer. It turns out that I had Squamous Cell Carcinoma of the breast--a very rare occurrence. Apparently Squamous Cell Carcinoma tends to occur in tissue that has been injured. Anyway, my question is--where did you read this information about injury, etc. I would like to investigate this further. Thank you for anything you can add. Brenda |
Posted By: Ronda
Date Posted: Sep 24 2007 at 10:09am
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Hi Brenda,
My references are all over the place and have gleaned them from many sources. One book "Waking the warrior Goddess" written by a doctor talks alot about injury, irritation, and breast changes as triggering cancer. But when you also read triple negatives being basal-like in nature. Basal cancers usually are associated with irritation/injury, like lung cancer. I believe my underwire bra triggered mine because the area was sore quite a bit before the lump appeared. In many of the the articles I have read it seems that women in there 30's with triple negative gave birth a couple of years prior to dx, pregnancy causes great change in breast tissue.
To search, I type in key words Like "triple negative breast cancer pregnancy" in the search area of my pc and pull studies and articles up that way. This inflammation stuff seems to be a reoccurring theme.
There are 2 questions we want answers to: What caused it and How do we stop it from growing if it's still in us?
I think this may be part of what caused it, along with perhaps genetics. But once you have cells that have mutated, the hope is none got away. If by chance one did, how do you slow the growth.
I take alot of supplements just incase to inhibit tumor growth, but like all cancer treatments you can't really tell what works and what doesn't. I may be 100% cancer free right now, but no one can tell for sure until I get a few years past this. Then who knows if supplements helped or not. My aunt had this at 37, so maybe my good lifestyle and vitamins gave me 7 years more of good health than she got . I was diagnosed at 44. She survived 25 years pasted her bc.
Sadly no one has the answers, even the docs, so you gotta go with your gut and don't look back. You can look at other posts I have made on this site re: supplements if you're interested.
I hope that helps.
Ronda
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Posted By: Ronda
Date Posted: Sep 26 2007 at 12:23pm
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Hey Nancy,
I think potassium deficiency is a bit different re: leg cramps vs. joint pain. Alkalizing the system with, believe it or not, lemon juice in water and avoiding acidic foods is supposed to help arthritic symptoms. Leg cramps are also caused by dehydration and calcium/ magnesium deficiencies (by the way magnesium deficiencies also cause eczema type skin/rashes).
I miss Boston (I ate fattening foods there, walked 10 miles a day, and soaked up the sun! I sort of felt human, Elmer Fudd-like, but human).
Hugs,
Ronda
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Posted By: deb522
Date Posted: Sep 28 2007 at 7:49am
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Hang in there girl, we have our bad days and the thought of reoccurrance is so scary. Try to take it one day at a time baby and keep yourself close to your strengths. It's great that you are talking about how you feel that's half the battle. It's amazing these days how many times you can fight this terrible disease and keep coming back! I have been fighting cancer since 1985 and now am 39 with Congestive Heart failure due to chemotherapy. Now I'm fighting with Social Security Disability, LOL! They better look out, cause I am one heck of a fighter these days, Haha. I have a my Space page if you want to check it out. myspace.com/debbieissurviving
Keep on Keep'n on I wish you all the love and support you deserve! Keep talking about it! |
Posted By: Ronda
Date Posted: Sep 30 2007 at 5:16pm
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Hi Deb522,
I went to your my space, what a cool site. You are a survivor! I'm kind of a vitamin nut and with the guidance of my naturopath took L-carnitine and Co Q10 enzyme during chemo (on nonchemo days) (I am also still taking it) to protect my heart and now repair my heart from damage caused by the adriamycyn.
We have another gal on this site who is also having CF all though her doctor doesn't think it was caused by the chemo.
Is your heart meds working???
Hang in there!
Ronda
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Posted By: kindlespirit
Date Posted: Oct 04 2007 at 3:22pm
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Hello Donna,
I was diagnosed with stage 3 triple negative breast cancer just over a year and and a half ago.(I had a bi-lateral mastectomy) Since then I have had excrusating pain in my whole body even my feet hurt, I have even been hospitalized for it. My doctors don't know what is going on, so they are treating the symtems. I hope it goes away just as quick as it came.
Sorry I can't be of more help, but I hope you feel better soon.
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Posted By: lisab
Date Posted: Oct 05 2007 at 7:14am
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Dear Donna and all, I, too, have been having terrible knee pain ever since I started radiation - it actually started one week after and has not stopped since. I am currently on chemo (every three weeks) and my oncologist says unfortunately while on chemo, they can't treat the knee pain. I tried hydrocodone but it made me very sick, so I am taking Advil - 3 tablets three times a day. It helps some, but I hobble around like an old lady most of the time. I am going to see my onc this Thursday and am going to ask him again about this pain. I've had bone scans and everything was clear, but I'm scheduled for more tests before the end of the year, so I will probably ask for another bone scan. I started my chemo the 2nd week I was on radiation which also happened to be when I started having my knee pain. I also have moderate back pain, but to be honest with you, I've had pain off and on for several years now. I think mine may be osteoarthritis.
I definitely think you should go for a bone scan and am so glad you called and made an appointment.
I hope and pray you can get over this pain and are on the road to a steady and healthy recovery.
Love and hugs,
Lisa B.
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Posted By: jenngo
Date Posted: Oct 10 2007 at 8:36am
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Hi I am brand new here and a very supportive freind told me about this website - I was 39 at the time of my dx, with a 6 and 3 yr old. I was stage 3, a 4cm tumor and 20 positive nodes on 9/10/04. My onc. has never made a big deal of the trip neg. but always told me there is nothing that I can take. I did dose dense (every two weeks) treatment 4 rounds of AC and 4 rounds of Taxol, after a lumpectomy. Did another lumpectomy due to the margins not being clean and then 35 rounds of rads. Told my reccurance rate was very high but so far so good. 6 months before I found the lumps I was dx. with Lupus/Mixed connective tissue disease. The symptoms were horrible pains in my wrists and hands. The pains all went away during the chemo, but have returned massively since finishing the txs. Now all my joints hurt from my shoulders to my elbows to my feet. I was on a med for Lupus but it did nothing and I went off it. I now take Ultracet every morning which takes the edge off the pains so I can get my now 6 and 9 yr old going in the am's. I always thought these pains were related to the Lupus but now wonder if they are a result of the meds. I also developed a heart flippy thing from lovely Adriamycin. A nutritional oncologist I saw told me that I should have taken aspirin every other day during the chemo to protect my heart but oh well... my mother was diagnosed with triple neg. bc a year after me. We both had genetic testing done and we were both BRCA 1 & 2 NEG. Tells me there is something else going on here...It feels really great to be here as I do attend a young women's support group but no one is Triple negative. I have worked hard to try to change my "internal mileu" so it doesnt come back with nutrition, vitamins and emotional healing (joy therapy!), but at times feel overwhelmed with panic and fear of its return. Thank you all for being here and sharing your strenghts, after three years people seem to forget what I have been through and I feel very disconnected so it feels great to find this website!
jenn
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Posted By: BeeCee
Date Posted: Oct 14 2007 at 4:47pm
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Hi there Jenn, Welcome to you. I am a lot older than you (63) but I was in pretty good shape, except for some back pain, until I started Taxotere in 12/06. The allover bone and joint pain started immediately. I would get relief for about 12 days right after each infusion and found out that was from the steroids that I took orally and by IV with the chemo. I even asked my onc if I could take steroids for the pain and he said NO WAY. They are to be used only temporarily. Now, it's been 8 months since I finished chemo and I am in more pain than ever. I started Neurontin in Mar, but it hasn't helped. I take otc ibuprofen and that helps some, but I need something more. I will see my onc for my 3 month checkup next week and I hope he will have some answers for me. My ideas are to see either a rheumatologist or go into pain management. I read about Taxotere before I took it and I knew about the neuropathy (and I had that in my feet, fingers and toes) but it didn't mention permanent bone and joint pain. I thought it might be because of my age, but I see lots of young ladies with the same problems as me. So, it seems to be chemo related. Wish I had known of this beforehand. I'm not sure if I would have taken Taxotere if I had.
Congratulations on being 3 years out from dx! That's very encouraging to hear.
If I might ask, what was the aspirin supposed to do for your heart? I have been taking a baby aspirin each day for many years and continued to do so during my chemo, which included Adriamycin. I know the dangers it poses to the heart. Maybe taking the aspirin as a blood thinner was a good thing, yes? I asked my onc if I could continue taking it and he said yes.
I wish you many more years of being cancer- free and hopefully, soon you can be pain-free as well.
------------- Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal) |
Posted By: patricia
Date Posted: Oct 26 2007 at 10:44am
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Hi girls,
I'm also new here today. It's been exactly 1 year since my cancer was found. I am so glad to talk to others with triple negative breast cancer. I had 17 kemo treatments and 33 radiation treatments. I was finished in June 07. My joints hurt so bad. My shoulders are the worst. My hips, knees and ankles also hurt. My doctor did every blood test going but nothing showed up. My husband drinks sour cherry juice which helps muscle pain so I started it. It helped my ankles a little but not much. My bones are good so that's not it.
If anyone has any ideas, let me know. Good luck to all you girls. I am 57 and really feel very good except for this joint pain. I still have my port but I don't think that has anything to do with this.
Patricia
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Posted By: shellieh51
Date Posted: Oct 26 2007 at 2:38pm
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I finished chemo 8/2/07 4 A/C and 12 weekly taxol. Pain continues especially if I sit still for longer periods of time - an hour will do it. I have a cane that I use at times. Our old crippled dog can almost beat me on walks - I am very slow but... Last week I outpaced a one and two year old in the corrider at the medical center - a memorable moment!
Take care and welcome! ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: woolie
Date Posted: Oct 27 2007 at 4:29am
| HO EVERYONE : HOPE ALL IS WELL . WE SHOULD HAVE SOMEONE FROM THE MEDICAL RESEARCH TEAMS READ THIS SITE SO THEY COULD FOCUS ON THE BONE PAIN. I LIVE IN NY AND IT IS RAINIG THESE PAST FEW DAYS AND BOY DO MY BONES ACHE , IT DOES GET BETTER WHEN THE WEATHER CHANGES . I NEVER HAD ACHY BONES BEFORE CHEMO. THIS MONDAY IS MY LAST TREATMENT AND THEN ONTO PET SCAN TO SEE IF I GET THE ALL CLEAR SIGN. I WILL START 35 RADS AFTER THANKSGIVING. ANYONE HAVE GOOD SKIN CARE ADVICE ON THE RADIATION AREA AS I HAVE VERY FAIR SKIN? GOOD LUCK YL ALL WOOLIE |
Posted By: shellieh51
Date Posted: Oct 27 2007 at 5:19am
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Greetings BeeCee!
I have had bad knees for years (I am 56) - probably heredity and then skiing the bumps in my younger years. Ask your onc and read about Taxotere - I continue to be told that the pain I have in hips, legs (burning sensation in the bones) and knees is from the Taxol - similar to Taxotere.
I take Advil gel caps during the day and on the worst nights, I take 2-500 mg. Vicodin as prescribed. I wobble when I walk and have had 2 months of rehabilitation (PT) 2x a week, an hour per session. I need to get to the gym but just don't have the energy. I do walk a lot throughout the day at the office and climb stairs between floors rather than use the elevator if someone else is using the staircase as well. I have fallen - at home on a flat surface - and am mortified of falling again and breaking something. I do not have osteoporosis but have the precursor, osteopenia.
I am almost three months out of treatment. I have been told that the fatigue and pain may persist for as long as a year following chemo. I have been sleeping well and sleep about 12 hours per night with the aid of Ambien CR - no more naps since I am working at the office until 4 PM - if I can maintain.
I hope this helps you - I think that is one of the best things about this site - finding out that we're not alone. I may start a thread on memory - that has been the biggest challenge for me.
Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: kirby
Date Posted: Oct 27 2007 at 9:27pm
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Alright ladies,
Haven't heard this one mentioned here yet. And to give you all some hope [I am feeling pretty good about this myself these days] I am a 7 year survivor. I only had 4 rounds of AC [that's how it was done then] but after treatment I remember my joints being very achy. I took glucosimine/chondroitan. I t has been so long I don't remember all the details. I think I did double doses for a while then cut it down, then quit altogether. My joint pain was not severe but enough to really bother me. Eventually I quit taking it and i don't have problems with my joints now.
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Posted By: trip2
Date Posted: Oct 29 2007 at 7:37am
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I finished Taxotere about 6 weeks ago and can barely walk 10 ft or stand very long from weak legs. I asked my Onc how long this would last and he said oh it could be months or a year or longer, lovely. I keep trying to stay up more, push myself, it gets very frustrating as I'm not a sitter.
For the life of me and maybe it is by choice but after treatments with
ACT 4 yrs ago I cannot remember how long it took to feel like myself again. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Angelstone70
Date Posted: Oct 29 2007 at 7:56am
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Hi Donna, I also continue to have joint pain, almost like a restless leg syndrome. Neuropathy or nerve damage is a side effect of Taxol or Taxotere. Sometimes I will take 3 Advil, and that will help. other times, it won't. My doctor thinks that if it persists, she will look into an alternative. But I'm only 37 and they don't think it's bone density. Also, it's been three years for me, so it's still ongoing.
Try not to get frustrated. Every morning you get up and look outside, remember YOU WIN today and Breast cancer loses! Every day you get to wake up and start YOUR LIFE, you've won and breast cancer has lost! start your day off as a winner! I, too, started walking and that has helped.
Best wishes and good luck!
Tracy
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Posted By: patricia
Date Posted: Oct 29 2007 at 8:19am
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Hi girls,
Thanks for all your encouragment. Except for my joint pain, I really feel good. It's so good to hear from all of you and know I'm not the only one. I walk every day which seems to help more than anything. Thanks again.
Patricia
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Posted By: lisab
Date Posted: Oct 29 2007 at 3:13pm
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Hi all - I cannot believe how many of us are having aches and pains who have been on radiation and/or chemo. I finally convinced my oncologist to give me the name of an orthopedic surgeon and am going to see him this coming Thursday. I'll let you all know what he finds if anything and what he recommends for treatment. I am so sick and tired of this (I'm sitting in the recliner right now with the heating pad on my back). I'm sure all the overcompensation for my knee is causing my body to go through unnatural contortions and thus pain in other areas.
Geesh.
Love and hugs,
Lisa B.
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Posted By: paula
Date Posted: Oct 29 2007 at 6:35pm
| I went to see my GP, she is referring me to a neurosurgeon for my back and neck. My legs and arms have been going numb/falling a sleep. At times the pain is so bad I can't even walk and standing can be excrutiating at times. I had an MRI last year and a bone scan a month ago. They said that everything was clear. They did note that I had degeneration of the C1 to C3 and the L1 to L5. I hope this doctor can help me. No one else seems to be able to. |
Posted By: shellieh51
Date Posted: Oct 30 2007 at 4:46am
Please keep us posted on your progress. It seems that most of us with the newer Taxol/Taxotere have similar symptoms and we are all eager to learn something that can help with the pain. While I joke about my economy size Vicodin prescription, I try to take the meds as infrequently as possible. The pain subsides but I feel a little loopy the next day and I am not one to 'give up control' in any circumstance readily  .
Take care and please keep us updated on the dx. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Angelstone70
Date Posted: Oct 30 2007 at 5:24am
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Working for Y-ME affords me many opportunities, one of which is access to resources such as a support group for neuropathy. here's the info if you're interested:
http://www.neuropathy.org/ - The Neuropathy Association |
Posted By: EWKSeattle
Date Posted: Oct 30 2007 at 6:31am
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Thanks for this. The neuropathy in my feet has gotten much worse in the last month, and I'm finding it harder and harder to walk. I had no idea there was such a resource. ------------- Dx 05/06 Stage IIIC Local Recurrence 01/07 Mets in opposite side axilla nodes 12/07 Mets to mediastinal nodes confirmed 11/08 NED March 2009-March 2010 Brain met March 2010. |
Posted By: marathonmom
Date Posted: Oct 30 2007 at 7:33am
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hello ladies,
Just back from the doctor's. She dx me with facial neuropathy....thanx Taxotere. Just wondering if any of you fav experienced this. Best, Oana ------------- dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads Oct 2007 mets to lungs and brain |
Posted By: trip2
Date Posted: Oct 30 2007 at 7:41am
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Goodness Oana, is it just one area of your face, like one side? What is she going to do to help you.
I just finished Taxotere too and have a numb thigh and of course the feet.
The stuff is nasty if you ask me but if it works it is worth these residuals.
Just wish w/time they would go away. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: marathonmom
Date Posted: Oct 30 2007 at 7:44am
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Thanks Pam,
Yes, it is just one side of the face, along the jaw line....like I just came back from the dentist. They do not know if it is permanent. Nothing will help...hoping it will go away! Oana ------------- dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads Oct 2007 mets to lungs and brain |
Posted By: trip2
Date Posted: Oct 30 2007 at 8:21am
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Well Oana that stinks, I hope it isn't too bothersome for you and that it goes away quickly.
I have been trying to google side effects after Taxotere and am not getting anywhere really.
My Onc had said it could be months or a year possibly before some of my symptoms go away, hope he is wrong for both of our sakes. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Oct 30 2007 at 2:12pm
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Hi Oana,
I found this site hosted by a Naturopath that mentioned alpha lipoic acid for neuropathy. It also contained compelling information regarding integrative cancer care. I hope all the gals will read it. There are supplements we can safely take while being treated for cancer that can prevent or at least reduce some of these serious side effects before they become permanent.
These oncs need to educate themselves so as to guide us rather than keep themselves ignorant and say "everything" is bad and must be avoided which is NOT THE TRUTH. Integrative support is necessary to maintain and restore health from these nasty cocktails, and we must insist on having all of the safe options available for us to choose from, even if these oncs need to go back to school for a bit.
http://www.drneilmckinney.ca/integrative_cancer.htm - http://www.drneilmckinney.ca/integrative_cancer.htm
I hope your face gets better!
Ronda
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Posted By: Ronda
Date Posted: Oct 30 2007 at 2:37pm
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Hey Paula,
You sound miserable. Vitamin B deficency has carpal tunnel syndrome symptoms (numbness) (I'm pretty sure it's B6 but taking a B complex will is better).
Also If you have a vitamin D deficiency your body doesn't absorb calcium/magnesium (and a whole lot of other crap for that matter) the way it should which could cause joint and muscle pain. Research it and you'll see what I mean. The feds are getting ready to raise the standard daily allowance of D to 800, many naturopaths still don't think it's enough. If you can see a naturopath to get diagnosed you may find simple solutions like this. Doctors typically don't address deficiencies and spend much of their time prescribing drugs to cover up symptoms. The problem with that is, long term deficiencies can lead to disease....like cancer.
Good Luck,
Ronda
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Posted By: marathonmom
Date Posted: Oct 30 2007 at 2:57pm
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Thanks Ronda,
Amazing that this approach was sponsored by the Canadian Cancer Society (I am Canadian) and yet here in Montreal, oncologists never talk about naturopathy in combination with chemo. I worked recently with a naturopath that was recommended by my GP but am currently looking for someone that has worked with cancer patients. Hugs, and take care of those new boobs, Oana ------------- dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads Oct 2007 mets to lungs and brain |
Posted By: paula
Date Posted: Oct 30 2007 at 6:46pm
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Hi Ronda
I'm taking a multi-vitamin, about 800 Vitamin D, Calcium along with Chromium and CO enzyme Q10. They have checked my B12 and it is normal, so that rules that out. I already take 3 different antidepressents. Two to help me sleep (I have some kind of sleeping disorder) and one for severe depression and anxiety. The 3rd one they put me on 6 months ago, it was supposed to increase my energy level and make me happy. NOT. The doc just put me on some anti-inflamatory pain killer for my back, hip and my shoulders, but I find it does squat, plus its hard on the stomach. Something I don't need with the inflamation in my stomach lining. I just find I have never recovered from the 2 cycles of chemo (CEF) that I received. The backpain started the 2nd week of the 1st cycle, they couldn't find out what was causing it then or now, that's why their sending me to a neurosurgeon, maybe he can figure out. I am still severely fatigued all the time and they can't figure out why. My blood work has come back normal for everything. I get up in the morning and usually have to take a 2 to 4 hour nap in the afternoon. By evening I'm exhausted again. This is what scares me the most. It's been 3 years since I finished radiation, you would think my body would be back to normal by now. They keep telling me that it will take time to recover from everything I went through during treatment. I am just tired of feeling this way. I think my onc thinks I'm nuts, but she has been great in sending me for tests to rule out cancer in my bones, abdomen/pelvis and breasts. Somhow I feel deep down in my gut that they are still missing something. That something is there but it just doesn't show up. Maybe I'm being perinoid. I just want to feel GOOD AGAIN. I guess no one would understand that better than another cancer paitent/survivor. Thanks for letting me get this off my chest. You explain how you feel to these doctors and they think its all in your mind, or your depressed, or insecure. My male oncologist told me I was fine that I should go out, have fun and live my life. That's before he transferred my file to his female consulting doctor that works with him. You know he only checked my breasts once or twice in the whole 2 years that I saw him. I guess he can't be too bad though he was the one to approve all my tests. I'm just very frustrated and all I want is to feel better. Is that too much to ask. I hope you are feeling better and I pray that you have a speedy recovery. I'm having a bi-lat with recon in the near future. Is it quite painful?? I really don't know what to expect. |
Posted By: kirby
Date Posted: Oct 30 2007 at 7:35pm
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Paula,
I know it can be so hard. My radiologist had told me I was "too sensitive". I don't know any one in my entire life to describe me that way !. I always knew he was a jerk but his early hours worked with mine at that time.
It was extremely hard to adjust to the term "new normal" but that is exactly what it is. I wanted things to be the way they were prior to cancer. It was hard to accept that this is me cancer treatment and all along with just plain aging. It just seemed to collide all at once. Time does help.
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Posted By: shellieh51
Date Posted: Oct 31 2007 at 2:02am
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Ladies,
Wish me luck as hubby and I depart to NYC today. I hope that the walking is minimal - I was pretty wobbly yesterday and in great deal of pain but think it is the barometric pressure and the changin weather here in CO. This is an important trip to me - Saturday will be the 1 year OMG anniversary and I want so much to be the way I used to be.
I started tearing in a staff meeting yesterday as accolades were being extolled for progress during the last year in my department . I think it hit me for two reasons - #1 yes kudos to me! I've been through hell and back during the past year and #2, it made me realize how much I missed.
Since I'll be on business, no personal email/web sites on company equipment so I'll try to catch up on Sunday.
Take care. You are a great group of ladies. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Karen
Date Posted: Oct 31 2007 at 5:27am
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I had chemo every 14 days. I had to take the week of from work after my treatment. I have a 3 yr old and 15 yr old and a supportive husband and sisters who took my 3yr old the weekend after my treatment. It was by the grace of God that I got thru the summer. Now I have 8 tx of rad left and it is going straight thru the nipple. can't wait to be done. and if one more person says "you have to have a positive attitude" I am going to scream.....
I am 44 and feel like 104, with all the joint and muscle pain.....not getting better. maybe when I am done with radiation? ------------- Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN |
Posted By: trip2
Date Posted: Oct 31 2007 at 6:24am
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Very well said Ronda ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: shellieh51
Date Posted: Nov 01 2007 at 3:53pm
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Don't forget the natural vitamin D - 15 minutes 2x per week outside WITHOUT sunscreen. Of course you need to live in a sunny climate but nothing beats it. I asked the integrative people if the dermatologists knew they were touting no sunscreen. I don't recall a response ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: elsa34
Date Posted: Nov 02 2007 at 3:40pm
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Hi everyone. I was just looking through this to see what experiences everyone has had w/ all your different treatments. I was diagnosed in March of this year (@ 33 years old, grade 3, 1cm, trip neg) and just finished my rads a month ago. It's freaking me out that I only got 4 cycles of TC and all of you appear to have had atleast 6 cycles of something.
I'm having the exact same pains in my joints for over a month now(some in my bones of my legs and arms) and also have had a low-grade fever for weeks- ugh. I'm convinced it was the taxotere and now I'm scared the pains won't ever go away. My Drs. think I'm nuts- one of the oncologists said it may be the flu- ha!- not for this long! I still don't take any pain meds other than Advil- don't like meds. But I'm exercising every other day- it hasn't helped though. My love to you all..... |
Posted By: trip2
Date Posted: Nov 03 2007 at 6:55am
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Hi Elsa and a warm welcome to you.
I'm so sorry to see you've been diagnosed but that's good news the treatments are finished. Try not to freak out over the differences between
treatments because they are different for everyone.
That's horrible you are in so much pain. I just got off Taxotere about 6 weeks ago and I too have pain and weakness in my legs. My Onc had said it could take months for it to settle down.
We are all individuals and when given chemo will react differently even afterwards. The low grade fever concerns me, maybe you should get an opinion from another Onc or your Primary? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: woolie
Date Posted: Nov 03 2007 at 8:31am
| DEAR ELSA : CONGRATULATIONS ON BEING FINISHED , I JUST FINISHED CHEMO AND START RADS AFTER THANKSGIVING. PAM IS RIGHT EVERYONES TREATMENT IS DIFFERENT BUT I WOULD KEEP AN EYE ON THAT LOW GRADE TEMP.THE APINS REALLY SUCK BUT GO AND ENJOY EVERY DAY OF YOUR LIFE . WOOLIE |
Posted By: EWKSeattle
Date Posted: Nov 03 2007 at 9:02am
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Hi Elsa,
I didn't do Taxotere, but I did do Abraxane, which is also a taxane, and I had bad bone and joint pain that started late in that course of treatment and then lasted several months afterward. I think it's pretty common with the taxanes generally. I also wondered if it would ever get better, but it did eventually go away.
One other possible cause of the fever and aches is low blood counts. If your counts are low, your bone marrow may be in overdrive, which could explain the pain and fever. I had this problem for a while as well.
I hope you get some relief soon! ------------- Dx 05/06 Stage IIIC Local Recurrence 01/07 Mets in opposite side axilla nodes 12/07 Mets to mediastinal nodes confirmed 11/08 NED March 2009-March 2010 Brain met March 2010. |
Posted By: shellieh51
Date Posted: Nov 03 2007 at 4:16pm
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Welcome Elsa!
As the others have said, don't get hung up on how the tx for others compare to yours - as my onc says, everyone is different and everyone reacts differently. I have been very fortunate with very few side effects except for the crankiness and bone & joint pain. A friend that was on TAC said her legs felt like they were in cement - good analogy.
I still haven't spoken to my onc about triple neg and I can't tell by my path report if my cells are 'Basal Like'. I may speak to the nurse to see what she has to say. I am now on 3 month maintenance and am crossing my fingers that I make it to three months (January) without having to go in.
The business trip to NYC went well but was glad I had my husband as a safety net. I took my cane but didn't need to use it and was walking at a faster clip than I have since Taxol's cumulative effect hit in June. I am tired today but also worked for 9 hours at my 'fun' job - retail, on my feet all day in a quilt store. I am still contemplating disability from my 'real' job - cognitive functioning is not improving as rapidly as I would like. I am still awaiting an appointment with National Jewish for some testing in this area - and I thought they were just for lung ailments.
My thoughts and prayers are with you - take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: kirby
Date Posted: Nov 03 2007 at 8:30pm
| Elsa, I freaked a bit too, when I found this sight. Everyone has had almost double the chemo I did. I was dx at age 45 with a 2cm. tumor no node involvement and did lumpectomy, 4 rnds of AC and rad. The good news..that was 7 years ago. Once I got over the shock, worry of the differences, it was easier to go back to the mode of thinking about enjoying life and worrying when I know I have something to worry about. |
Posted By: lisab
Date Posted: Nov 04 2007 at 3:12am
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I went to see a orthopedic surgeon last Thursday. Fortunately, he said from what he could tell after examining me and also after X-rays that my knees don't appear to require replacement. I was very glad to hear that. He said there is fluid on one of my knees and I am going to have to go for an MRI. Also I may get some shots to help relieve the pain. He and my onc are friends so he already knew about me having radiation and chemo; he said he doesn't think either has caused this problem. It's funny that it all started right after I started treatment, but he's the expert, not me. I just wanted to let you all know because of so many people having pain with treatment. I wish I had something more solid to tell you, but I don't.
Love and hugs,
Lisa B.
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Posted By: lisab
Date Posted: Nov 04 2007 at 3:14am
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Dear Shellie, thinking of you today, hope your business trip wasn't too hard on you.
Love and hugs,
Lisa B.
After I wrote this I saw you had already posted - it sounds like your trip was good - I am so glad to hear that.
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Posted By: Karen
Date Posted: Nov 04 2007 at 1:44pm
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I have 7 more tx of radiation and have had increasing bone and joint pain. The radiologist said that she is seeing more of this with radiation and said it is a form of arthritis. My fingers and limbs are so stiff if I am still for a long period of time - worse in the morning. She said it should go away. Advil has been helping a little.
I get nervous because a friend I made at chemo was on her 2nd occurance (younger than me in her 30's) and the cancer put holes in her shin bone and the bone in her arm. She thought it was a pulled muscle. Her leg and arm felt very weak.
WE have to be our own advocates and keep pushing the Doctor if the pain is not getting better. ------------- Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN |
Posted By: elsa34
Date Posted: Nov 05 2007 at 3:46am
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Wow! I can't thank all of you enough for your insight. As strange as it seems, it's kinda comforting to know that other people are having the same types of side effects that I'm having.
Oh, for Karen, that was the original comment from my onc when my bone/joint pain started- they said it was arthritis unrelated to the chemo (at 34 years old! I dont think so all of a sudden)- that's when I went back and they said its the flu. I'm thinking of trying another onc- I go to Mayo clinic and the two oncs- including Perez- was not not concerned with my pain. I hope it goes away as some of you have said. It's a little tough though trying to maintain a full-time sales job and dealing w/ this. Has anyone read about utilizing aspirin in triple negs (I'm wondering since I take so much Advil for pain and I've heard a few things out there that It may help lower recurrence- European data of course). My love to you all.... |
Posted By: Ronda
Date Posted: Nov 05 2007 at 12:33pm
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Hi Elsa, There is data on anti-inflammatories reducing breast cancer. Asprin is aborbed in the gut, ibuprogphen through the kidneys, acetaminophen through the liver, you can rotate them around so you're not too hard on any one organ. I've just added baby asprin to my daily supplements.
Ronda
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Posted By: Darla
Date Posted: Nov 07 2007 at 3:26am
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Hi everyone, I haven't read every post on this thread so forgive me if I repeat something. I was doing well for a while on the Taxol - probably because I'm doing 12 weekly rounds but after about the 6th week things started to change. I have two more left and the bone and muscle pain is really bad. My hands and feet are pretty well numb - except for the nail area of my two big toes which really hurt. Basically, what isn't numb, hurts. I cannot take aspirin or ibuprofen because I'm on Coumadin. Supposedly, Tylenol is ok but I took it just a few times last week - nothing close to what I could have taken and my INR shot up to 4.6 - WAY too thin. The anti-coagulation nurse told me Tylenol can interact with Coumadin too. Any suggestions. Thanks Darla |
Posted By: woolie
Date Posted: Nov 07 2007 at 8:22am
| DEAR DARLA : TALK TO YOUR ANTICOAGULANT NURSE ABOUT WHAT FOODS CCAN ALTER YOUR INR ALSO JUST IN CASE THEY DID NOT GIVE YOU A LIST. PLUS TRY HEATING PADS OR ICE PAKS WHATEVER GIVES YOU RELIEF .JULES |
Posted By: Darla
Date Posted: Nov 08 2007 at 1:22pm
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Hi Jules, Thanks for the advice about the heating pads/ice packs - I never thought of it. I know what foods to avoid, what's interesting or strange is that those foods - green leafy vegs, anything with a lot of vitamin k, have to be avoided because they LOWER your INR - so the blood is too thick. I had the opposite problem, my INR spiked and my blood was way too thin. On the plus side I got to eat as much salad as I wanted this week. I'll find out tomorrow what it is now, hopefully between 2-3. |
Posted By: thinkpositive
Date Posted: Nov 08 2007 at 3:42pm
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I am triple negative diagnosed March 2006 left breast, bilateral mastectomy, 4xac 4xtaxol. Took Neulasta during chemo and experienced muscle pain. Finished chemo 12-06. Knee pain started in April 07 - had xrays with no evidence of bone cancer. Orthopedic dr. suggested advil and exercise. Pain in upper right arm and shoulder started in August - xray of shoulder shows no evidence of bone issues. Pain in left arm and shoulder in October. Pain so extreme in both arms that I am unable to sleep. Orthopedic specialist diagnosed bursitus in both arms and am currently doing physical therapy. Just seems too odd that knee and arm problems started after chemo. Orthopedic dr. said bursitus typical for athletes with repetitive overhead activity (tennis etc.) I am not athletic.
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Posted By: hope4life
Date Posted: Nov 20 2007 at 9:39am
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Hi Donna,
Well I don't want to upset you but I feel you need to know what my best friend went through. She was diagnosed with triple negative breast cancer Dec 4/06, and had a lumpectomy and lymp nodes removed (small percentage in nodes) she went through the most aggresive chemo and radiation and a 4-6 months later was experiencing a lot of back and leg pain. She had several tests including MRI and bone scans and they turned out normal. Dr's were telling her the pain was probably physcosamatic and prescribed her pain medication, anti-depression/anxiety medication. Then about a month ago she had a bone marrow biopsy and a PET scan which revealed she had cancer in her bones and liver. She was diagnosed Oct 29/07 with terminal cancer and passed away a week later November 6.
Please, please go to the doctor and demand the PET and bone marrow test as the MRI and bone scan did not detect anything. Apparently they don't do PET exams on breast cancer patients because it's very hard on the heart. I really hope that your case is not the same as my friends but you have to be your own advocate and push the Drs as much as you can. Please let me know how you make out. Here is my personal email address: mailto:robyn_maclean6@yahoo.ca - robyn_maclean6@yahoo.ca
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Posted By: Donna
Date Posted: Nov 20 2007 at 10:31am
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Hi Robyn, I'm going to ask my Dr. next week about those test, thank you. On Monday having the second mastectomy for preventive. So for they think it hasn't spread but, always worried it will. I do have lymph nodes enlarged again but there praying its because of the port I had. I'll let you know how it all turns out. Thanks again.
Donna ------------- Donna |
Posted By: trip2
Date Posted: Nov 21 2007 at 3:02pm
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Donna I just wanted to send you best wishes and hugs hoping your surgery goes smoothly Monday and you heal quickly!
Please do keep us posted, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Kris
Date Posted: Jan 14 2008 at 3:37pm
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I was diagnosed with stage II, triple negative in July of '07. I was glad to run across this site because being triple negative, I've felt left out of many breast cancer discussions.
I was treated at a hospital outside of Chicago that focuses both on convention and naturopathic treatments. When I first started Taxotere, they immediately suggested glutamine supplementation because it helps with the neuropathy. I take a pretty high dose for 7 days after each treatment, then reduce it. It has really helped me - for a few days after I will feel that tingling starting but by the time the 7 days are up it's pretty much gone. It has also been shown to reduce mouth sores, and I never got any of those even after 4 A/C & 4 Taxotere. It also supposedly can help with wasting syndrome.
Glutamine is somewhat controversial though - some believe it feeds tumors. But if you Google "glutamine neuropathy" several sites come up saying that it has been shown to work against neuropathy.
While the tingling goes away, I do have some joint pain but I just finished my last treatment last week. I'm hoping it will subside over time if I keep up a regimine of good diet, appropriate supplements, etc. I was kind of relieved to hear someone else mention ankle and shoulder pain because I thought I was going nuts!
I hope this helps!
Kris
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Posted By: woolie
Date Posted: Jan 14 2008 at 4:12pm
| Tomorrow is my last radiation treatment and that will complete all my treatments for now , the rest is follow up for now so Good Luck to everyone starting out it is a long road and this website does help. |
Posted By: trip2
Date Posted: Jan 15 2008 at 3:04am
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Hi Kris,
Welcome and thank you for sharing your story about your experience with glutamine, it sounds like it really helped you. It helps so much going thru treatment when you have something you can take to ease up the side effects if you're experiencing them.
Interesting, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 15 2008 at 3:06am
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Hi Woolie,
That is wonderful, today is your last treatment day!
I hope you are doing well, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: lisab
Date Posted: Jan 15 2008 at 6:26am
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Dear Woolie - hooray - I am so glad for you. Now you can focus on getting some of your strength back. Rads really took alot out of me, not the first time, but the second time when I had chemo with them. I am so excited for you - nothing like finishing up a treatment. Woo Hoo!
Love and hugs,
Lisa B.
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