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jabutler172 
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Joined: Nov 07 2007 Location: United States Status: Offline Points: 22 |
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 Topic: One Year afterPosted: Aug 26 2008 at 5:26am |
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Hi everyone,
I am not new to this site but have not posted much. I read everyday to see if I can find someone who is experiencing what I have.
I am still having side effects from Taxol and it will be one year on 8/30/08 that I had by last chemo. I wake up with pain in my calfs and feet during the night and sometimes by fingers.
I still have shooting pains under my breast where my incision is from the lumpectomy and breast bone on occasion. My surgeon says it could be permant. I am very tender in spots under the breast but at the same time numb where the nodes were taken out. I passed my mamogram with flying colors in March and I am scheduled for a MRI next month. My surgeon has put me on 6 months check up visits but my ono still has me on every three months.
I do not see many posts from people who are 2 or more years out with TNBC but I am guilty of this myself. If there is anyone out there who is only reading and still ned after two or more years please it would be helpful to hear from you.
Joyce
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Joyce
TNBC Chemo 4AC 4Taxotere 8/30/07 Lumpectomy 10/01/07 Radiation completed 12/18/07 1 yr. cancer free 4/4/08 dia. stage IV 10/03/08 mets to lung, liver, bone |
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sharon in Mich
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Joined: Feb 29 2008 Location: United States Status: Offline Points: 70 |
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Posted: Aug 26 2008 at 6:34am |
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Hi Joyce,
I read most days and take tremendous support from this site. I don't post much, since there are several others--Nancy, Pam, to name just 2--who keep up with the research much more than I do, but I always answer the calls for long or mid-term survivors. Some of you are probably bored with my chipper posts. Anyhow, I am 3 years, 4 mos and 27 days (am I a compulsive counter or not?) out from diagnosis and still NED. I had lymph node involvement. We never knew how many, because I had neo-adjuvant chemo. My onc moved me from 3 to 6 month check ups in July. I know it could still recur, but I am now well beyond the red zone and am hoping to be one of many of us who will improve the survival statistics. I also have two friends 6 and 5 years out from a tn dx ned. Take heart. They didn't even have a name for TN 3yrs ago and now we have this foundation and research that really is making a difference. Sharon |
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jabutler172
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Joined: Nov 07 2007 Location: United States Status: Offline Points: 22 |
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Posted: Aug 26 2008 at 6:44am |
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Thank you Sharon, my onc told me if I could get past the three year mark I would be on my way. I will be 58 this year an looking forward to retirement and my grandkids. Hope to see more posts like yours. |
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Joyce
TNBC Chemo 4AC 4Taxotere 8/30/07 Lumpectomy 10/01/07 Radiation completed 12/18/07 1 yr. cancer free 4/4/08 dia. stage IV 10/03/08 mets to lung, liver, bone |
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Aug 26 2008 at 8:02am |
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Hi Joyce,
I'm on about the same calendar as you--finished chemo last July, rads in October. I just posted about my stiffness and pains, too. If we can rule out mets (PET scan next week), I am going to go full-out with alternative therapies for those pains. Several people have hypothesized that it's menopause related. Others say chemo causes arthritis. In either case, the only times I feel really good are right after acupuncture. I have a relative that lives in Costa Rica, who was diagnosed with debilitating arthritis 10 years ago and she sees a naturpath who has almost completely cured it using flower essences (?!?!). I'll try anything. Traditional medicine has its pluses, but there are just so many things they can't cure by prescribing a pill. It's very frustrating, isn't it? I can't even keep my house clean or take care of my kids as I should. Everyone says "You look great!" but that's not much consolation when I can barely get out of bed. Lots of love and support your way. Donna PS I remember everyone saying that lymphodema never goes away, either, but mine has. |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Aug 26 2008 at 1:31pm |
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Joyce,
I found my lump in Jan. 2001. That makes me almost 8 years out !
I had posted recently about having a massage therapist "work" the scar area. I would get scar tissue from the axillary scar to the lump scar, which would casue pulling and uncomfortable sensations. A good therapist can manually work this area, diminishing the scar tissue. You know there is real trust going on when you let them do that !
I had a lot of range of motion issues with my shoulder. I did massage, accupuncture, excersizing and pressure point therapy to relieve all this.
By now, most everything is a memory.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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Jessie
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Joined: Aug 07 2007 Location: North Carolina Status: Offline Points: 515 |
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Posted: Aug 28 2008 at 9:39am |
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Hi Joyce !
Every day that goes by without hearing a doctor say those words we fear -- "It appears your cancer has spread to......" --- is an EXCELLENT day !
 I've passed my 2 yr mark and sailing right along, NED. My first year was truly a "year from hell". After my dbl mastectomy, instead of going on into the chemo regeime as scheduled, bad luck or fate or destiny took me down a path of systemic MRSA and almost death, on to heart issues and a triple bypass. My onc declared chemo was too risky to mix with recovery from the infection and heart surgery.
I don't know whether to be worried because I didn't get the chemo benefit or relieved that I don't have any lingering undesirable effects of chemo.
 I admit I do get very nervous around scanning time.
I'm totally dependent on the dbl mastectomy to have been enough to rid me of the TNBC. I'll continue to be scanned every 6 months, but honestly, I don't think it'll come back. Famous last words maybe, but I just don't expect it.
I feel good now, working full time, love my job, looking forward to retirement so I can piddle with my machine embroidery, sleep late and read those cheap novels.
 Just keep on keepin' on --- deal with the situation as it is today and don't waste your energy or time on the 'what ifs'. Life's a good thing !
 Jessie
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IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06, systemic MRSA post surgery septic shock, heart attack triple bypass 1/07 no chemo due to infections and heart issues so far NED! |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 28 2008 at 10:54am |
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Jessie you sound great! That is wonderful after all you've been thru to see how the wheel has turned and you are back to enjoying life,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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billie
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Joined: Mar 30 2008 Location: United States Status: Offline Points: 345 |
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Posted: Oct 02 2008 at 8:01am |
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Hi Jessie,
Shame on you to say that you are using a machine to embrodery.HeHe!! You know,I used to picture myself,after retirement,as I grow older and older,sitting in my recliner doing a little hand embrodery.
No one told me that every time I get into that recliner ,for some reason,my body thinks that it is suppose to take a nap and the hands no longer seem to work as they used to.I once made a queen size quilt ,sitting in my recliner,and all by hand.I long for those days again,but I am sure that they are not to be.For some reason,I cannot seem to stay away from my computer,connecting with our beloved foundation.
I had an oppurtunity to get a machine to embroidery at one time ,but I was afraid that I would not be able to figure out how to use it.But I also, not to long ago ,did not know the first thing about a computer,and here I am.
If, it is your intention to embroidery on your machine after you retire,then you are going to have to put yourself on a strict schedule.Miss Pam and I have discussed so many times how when you connect to the foundation,that a whole day will go by and you will still be in your jammies.Why take them off to get right back into them.(just joking,but I guess we could do as Nance(Nancy) does,she leaves her computer connected to the foundation while she goes to take a shower just to make sure that she does not miss anyone.)OK Jessie after you retire keep us informed about all of the beautiful things that you get completed on the embroidery machine.Maybe you could choose 1 day for the machine and then the next day for the foundation.I will be very much interested in how you are able to get this done.I used to sell on ebay,and I made pretty good money,but then my world was consumed with the big C word and I just cannot seem to stop trying to give back to a wonderful gathering of angels that allowed me to come into their world.
Bless you Jessie,you are a wonderful inspiration to so many each time that you post.And this foundation ,I am sure, will be willing to share your time with a machine after retirement.Lots and Lots of Huggggggsssssd Billie
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Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Oct 02 2008 at 9:23am |
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hi jabutler,
yesterday a woman came to bible class who was diagnosed with breast cancer in 2000-she was hormone negative and i consider her a triple negative--she had 12 nodes involved. meeting her gave me a lift and lots of Hope! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 02 2008 at 9:45am |
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See Krisa,
These gals are out there.
 They are just not on the sites, because they don't have the time....they are too busy living life to the fullest!
 Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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AustinCarol
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Joined: Jun 12 2008 Location: United States Status: Offline Points: 45 |
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Posted: Oct 02 2008 at 6:16pm |
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Hi Joyce,
I finished chemo in 5/06. I'm am still NED and will have an annual MRI this month. Overall, I've done since I got over the tiredness after radiation. However, gradually since April this year, I've been having increasing foot pain and lower body stiffness. While on Taxol and for months afterwards, I had neuropathy with a lot of tingling and burning in the feet and somewhat in the hands. Then it went totally way for at least a year and a half. Now, I'm stiff and sore in the morning and when I stand-up from sitting down for just 15 mins. The more I walk, the better I am at the time. I've finally gone and seen 3 doctors for this in the last 2 months, my GP, a rheumatologist, and a neurologist. I've had X-rays of hands, feet, and hips. All normal except for hips which indicate my cartilage is thinning. I've had a nerve induction test which showed the motor nerves in the legs are fine, but the sensory nerves have been degraded. This is probably due to damage from the chemo. However, there is no way to know if the degrading is responsible for the pain. I'm now on increasing dosages of gabapentin. I probably have planar Fasciitis in the feet. I'm doing exercises and treating for inflammation to try to get the foot pain under control. Just this evening, I bought some gel heel cups to see that can help too. I'll be going out this weekend to buy chondroitin. I did find out that I too was very low on Vit D, so I'm now taking 50000 IU every week for 6 weeks, then every other week for a few months. I went into menopause this summer, so I don't know if this is a factor. I also had 50th birthday this summer. I'm looking forward to passing my 3 yr dx in Jan. This sounds similar, but perhaps different from your symptoms. I'm trying different things and see different specialists to find out what I can do to make things better. I may truly have more than one thing going on at the same time that will take different solutions. So take heart and keep trying different things and let the docs (and us!) know how you are doing. -Carol |
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Dx 01/06 DCIS LB (age 47) TN Stage 2a; High grade; MBRS 9/9; 4 cm; nodes neg; BRCA-
Tx neoadjuvant AC4 + T4 dose dense; Lump 06/06; 35 rads (7 boosts) 08/06 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 03 2008 at 8:01am |
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Carol,
The Peripheral Neuropathy can come on anytime, sometimes months or a year before it hits us if it's going to.
I was recently diagnosed with this by my family doc so they put me on the same med you have now. I didn't find it helping so have increased what I take at night because it can make you sleepy, especially when you first start taking it. After that I didn't get sleepy.
Right now the bones in my feet are hurting so bad that I hate to walk and when barefoot around the house walk flat footed half the time and slow!
My whole body is beginning to hurt in my bones on top of my joint arthitis which I know gets worse in the cooler weather. I wonder if Peripheral Neuropathy is also affecteed by weather?
I did get good advice on better shoes which has helped. Billie has helped me so much with this Neuropathy thing.
What a jewel she is!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Cheryl51
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Joined: Dec 31 2007 Location: El Cerrito, CA Status: Offline Points: 314 |
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Posted: Oct 03 2008 at 8:42am |
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I will be one year out of chemo and radiaiton treatment on October 31st. Trick or Treat!!!
Recently I have been dealing with a real increase in neuropathy in feet, climbing up legs, now hands, sometimes my head feels really fuzzy. Trying acupuncture and B vitamins as first line of treatment. Yesterdays appointment with acupuncturists(also an MD and part of my oncology team) said we'd watch it for awhile before doing any brain scans....YIKES...never like to think about the brain going south(at least any further than it already is
 )I still think that the "afterglow" of cancer treatment takes years to process both physically and emotionally. I am now in touch with several docs in my area..including the founder of our new breast care center..to initiate programs for survivors of breast cancer helping us all deal with these concerns. We'll see how that all goes...no doubt it will take time...
Best to all. Hey, I seem to be able to post again!!!!
Cheryl51
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Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 04 2008 at 12:23pm |
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Good luck Cheryl, sounds like you are in good hands.
Let us know how you are doing,
Hugs
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Cheryl51
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Joined: Dec 31 2007 Location: El Cerrito, CA Status: Offline Points: 314 |
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Posted: Oct 04 2008 at 3:34pm |
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Thanks, Pam. And for sure I need to credit you for all the research you do as I have used some of those articles to state my case. You really do all of us a great service and I know we all appreciate it a whole lot
Cheryl51
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Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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poookyquilting
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Joined: Oct 04 2007 Location: United States Status: Offline Points: 45 |
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Posted: Oct 30 2008 at 9:44am |
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Hi Nancy,
I was diagnosed the day before you. June 12, 2007. Stage IIIA, 1node positive for cancer out of ten removed. Had mastectomy in August 2007. Finished chemo in January this year. Finished radiation April this year. Had PET scan last Friday...am still awaiting results. Do you know if something shows up on your blood work..then they suggest PET scan? I had a 3 month checkup with my onc. Then my six month one and I was hurting in my left side(side where mastectomy)and my onc. said he didn't think anything was wrong but he wanted to treat "Me" and that my attitude would mean alot in my recovery. So he set me up for PET scan. I was crying and upset...just the worry...constantly thinking that the word "recurrence" will come up. He suggested I stop reading about TNBC and stop worrying. Easy for him to say. Don't get me wrong, I like him so much. He is fantastic. Very caring and listens to me and doesn't act like he is rushing you out like alot of doctors do. BUT, I tend to have alot of pain as I had polio and use an electric scooter and wear a brace on my right leg...so the pain I am feeling, hopefully, is just musculoskeletal from the after effects of polio. I pray we soon get a cure and/or a BETTER treatment for TNBC patients. You are an inspiration to all of us. I'm 57 and have two daughters and 8 beautiful grandchildren that I love spending time with...I also have an embroidery machine..but since my diagnosis and treatment have not gotten back to it yet and am behind on making blankets and quilts for the last three grandkids. Two of which are 16 month old twin girls. Anyway, God love you and the rest of the girls on here and lets pray for each other's complete recoveries. Jan |
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Oct 30 2008 at 10:02am |
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Hi Jan,
Since your doctor welcomes your questions, (lucky you!), I would definitely ask him directly if he recommended the PET because something showed up in your bloodwork, or for other reasons. If it was last Friday, chances are they would have called you by now if there were something worrisome. You know, the 2-day phone call rule--never good news. Why don't you call him today, to put your mind at ease? I have a dear friend who has also been fighting severe post-polio symptoms for 5 years or so now. She says it's very common for women around 50 years old who had polio as a child? At any rate, that certainly is a double whammy with breast cancer. You are dealing with a lot! Much love and healing your way, Donna |
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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poookyquilting
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Posted: Oct 30 2008 at 11:00am |
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Hi Donna,
My Oncologist, I think, just wanted me to have the PET scan to make me at ease. But when he did my exam, he hesitated on my right breast. He didn't say anything but he did concentrate on my that right breast. I may just be paranoid... I have thought about calling him to get the results of the PET but I'm so afraid of the answer. But I keep reading these posts and they are encouraging. If he doesn't call by tomorrow, I will call before the end of the day tomorrow. He didn't do bloodwork this exam. He said I didn't need any done. He did bloodwork in July and it was okay except my liver enzymes were a little high but he said that was probably from the chemo. Jan |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Oct 30 2008 at 12:27pm |
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Hi Gals, My aunt survived her TNBC,, she was DX'd at 37 and passed at 65ish from Lupis.
Sadie Rose is 4 or 5 years out I think. We need to keep in mind most women never think to ask, let alone research their pathology...we are rare breeds! Also keep in mind the term "Triple Negative" has only been around three to four years. There are lots of TNBC survivors out there, they just don't know it!!! We are the mentors for future TNBC gals, so the master plan is to stay alive so we can give them hope....what do ya say??
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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poookyquilting
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Posted: Oct 30 2008 at 5:52pm |
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Ronda,
thank you so much....I needed this news so bad. I have been so depressed. I've been thinking terrible thoughts for weeks now. My oncologist told me stop reading stuff and to keep a good attitude but I didn't know that there are survivors out there with TNBC...atleast I never thought about it like you said. One oncologist said I have a 57 percent chance of survival and the other one said 60 percent. Also, they said if I can make it past, I think, the first two years or three years I would do very well. Something to that effect. Thanks for your post...it helped so much. Oh, I have two grown daughters and am going to be tested for the BRCA1 gene. Jan DX 6/07, Stage IIIA, 1 of 10 nodes tested positive, Grade 3, Tumor 5.2cm. Mastectomy 8/07, chemo Taxotere,cytoxin and adriamycin and 31 rads. |
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