Best chemo for 3N?
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Topic: Best chemo for 3N?
Posted By: emilypdx
Subject: Best chemo for 3N?
Date Posted: May 09 2008 at 2:47pm
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Hi all, I just had a conversation with my doctor and she mentioned that the latest research seems to indicate that 3Ns respond best to drugs used normally for lung cancer. Has anyone else heard this or what drugs in particular seem to work the best?
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Replies:
Posted By: BrendaF
Date Posted: May 10 2008 at 5:01am
| I have not heard this specifically from a dr, but in my research for clinical trials, I have been noticing that many drugs being tested for 3neg are already in use for small cell lung cancer, so that makes a lot of sense. I have just finished carboplatin with taxotere, for mets, which has been very effective for triple negative. I don't know if they are using this combo in adjuvant therapy, though. |
Posted By: defeatbc
Date Posted: May 10 2008 at 7:29pm
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I've just started carboplatin and taxotere (I have stage II). My oncologist decided on that combo over AC. He gave me various reasons for that decision such as avoiding damage to the heart, and that that combo tends to work well for 3N's. If I'm not wrong, I think carboplatin is one type of chemo commonly used for lung cancer.
------------- Dx 3/08 at 31 yrs. Stage 2, Grade 3, 1/13 Nodes, Bi-Mast adjuvant Taxotere & Carboplatin BRCA1- and BRCA2- Determined to grow old with my spouse and see my toddler son grow up! |
Posted By: lisab
Date Posted: May 11 2008 at 7:18am
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I was on Carboplatin and Gemzar, along with radiation at the same time, for my breast cancer (mets to the chest wall). My onc told me the platinum drugs are excellent for triple negs.
Love and hugs,
Lisa B.
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Posted By: Sadie Rose
Date Posted: May 13 2008 at 4:44am
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I had three rounds of AC which did not work for my tumor. My oncologist switched my cocktail to carboplatin and taxotere for 6 rounds. I am 4 years out from the end of treatment.
I hear more and more about cargoplatins being used for TNs.
Warmly,
Sadie
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Posted By: Lynn
Date Posted: May 15 2008 at 5:49am
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I am currently being treated at Memorial Sloane Kettering - arguably the best in the country, (I am Stage 1, triple neg), and they have said that the best treatment is 4 treatments every two weeks of AC, followed by 4 treatments every two weeks of Taxol.
Hope that helps.
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Posted By: Betty Trouble
Date Posted: May 15 2008 at 9:07am
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Glad to hear that from Sloane Kettering. I'm being treated out in Seattle, and my oncologist has me on the same regimen, only I am doing 8 cycles of Taxol going weekly. It's the same dosage overall, but he says weekly infusions can help manage down the side effects.
We started out on a plan to do 6 treatments, every 3 weeks, of Adriamycin, Cytoxan and Taxotere. The cocktail kicked my butt, though, and I ended up in the hospital for 3 days with neutropenic fever. We then did 3 rounds of AC every two weeks (followed by Neulasta the day after), and I go for my 3rd round of Taxotere tomorrow. After 2 or 3 (can't remember) treatments, ultrasound showed tumor shrinkage.
After that first round, have been tolerating the drugs well. Some nausea with the AC, but really no major side effects so far with the Taxol. Some loss of eyebrows and eyelashes and weird sensations in fingers and toes which I suspect is the onset of some neuropathy. All in all, not as bad as I had imagined it.
Good luck with whatever you and your doctor decide.
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Posted By: BrendaF
Date Posted: May 15 2008 at 10:01am
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Lynn, that's basically still the "one size fits all" chemo that all types are still getting, that I got in 2005. In the chat group I participated in, I think there was only one woman who was on a different regimen, and she was from Australia. The only difference was that some were doing taxotere for the second set of four, rather than taxol. But everybody did adriamycin and cytoxan, dose dense.
I have to admit that I'm surprised that adjuvant therapy hasn't changed for triple negatives since then, since there is so much talk about using platinums on triple negative BC. Three years, and nothing is new....that's a bit discouraging.
defeatbc, I think your oncologist is to be commended for going with the treatment you are on. I have an echocardiogram scheduled in two weeks to check for heart damage from adriamycin, since I have some unexplainable SOB. I guess it's fairly common for it to manifest several years later.
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Posted By: trip2
Date Posted: May 15 2008 at 11:26am
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Brenda, I want to wish you good results on your echocardiogram.
I developed CHF about 4 yrs after taking A. No proof in the pudding but I have my suspicions. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Terri
Date Posted: May 16 2008 at 8:06am
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Has anyone else had 6 tx`s of FEC, 1 every 3 weeks? My onc said it is used alot in TN`s but I don`t see much of that on here. ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: hubby
Date Posted: May 28 2008 at 11:46am
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Hi Emily, My wife was diagnosed in February '08, 2.5 cm IDC. She just finished 4 rounds of TC neo-adjuvant chemo. The latest mammogram / ultrasound showed that the tumor can't be seen any longer. Hooray! We're in Portland as well. |
Posted By: Sadie Rose
Date Posted: May 28 2008 at 4:21pm
| Portland. OR? |
Posted By: Possum
Date Posted: May 28 2008 at 5:09pm
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Hi Terri,
I was offered 6 cycles of FEC as one option, but decided upon 3 cycles of FEC and 3 of taxotere.
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Posted By: Christie1
Date Posted: May 28 2008 at 6:02pm
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I wanted to know if anyone just got 4 cycles of AC every 3 weeks for stage 1 tnbc? Back in 2005, when I was diagnosed while pregnant, that's the chemo regime that was supposedly safe to give to pregnant women. I really didn't have a choice. I couldn't do dose dense while being pregnant and my onc said the side effects of Taxol outweighed the benefits for me, most likely giving maybe a 2-4% benefit. So she advised me against taxol. I'm a littlle over 3 years out from diagnosis and I sometimes still feel like maybe I didn't get enough chemo, or maybe not the right cocktail of chemo. I even went down to Sloane Kettering well after I had finished my treatment ,and they told me they would have given me the 4 cycles of AC that I got, maybe just dose dense. But I couldn't do the dose dens obviously due to the pregnancy. They did say they probably would have offered me Taxol, but still agreeing with my ONC in Syracuse, that it would possibly give me a 4% benefit. Over the past 3 years, I have done alot of research and have read there is much hope for the platinum drugs, which would make sense, as they are "basal-like" cancers.
------------- DX 4/05 WHILE PREGNANT AT AGE 34, 1.9 CM IDC, TN, GRADE 3, BRCA1+, 21 NEG LYMPH NODES, B/L MAST W/ RECONST., 4 CYCLES AC CHEMO, PROPHYLACTIC SALPINGOOPHRECTOMY, MARRIED 11 YRS W/ 3 BOYS, 9, 5, AND 2. |
Posted By: Sadie Rose
Date Posted: May 28 2008 at 6:58pm
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Hi Christie1,
What a challenge you describe! When I went through my treatment a young mother was there with a toddler. I used to wonder how she got through those days after a treatment when you feel very tired or chilled or just sick.
It sounds like your doctors had to weigh the pros and cons for both you and your baby. I think it is really positive that you are two years out from diagnosis.
There have been times when I posted that the AC comination didn't work for me. As often as I have stated that others have responded that AC worked very well for them.
Are you doing MRIs and PET scans? Everytime I have one of these tests come back clear I get more confident with my treatment. I don't think you doctors would suggest doing more treatments at this point.
How is your baby (toddler) doing now?
Warmly,
Sadie
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Posted By: Beth Anne
Date Posted: May 28 2008 at 7:12pm
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Hi Emily,
How are you doing? Did you end up coming to Seattle for some answers?
Hope all is well,
Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: KatePV
Date Posted: May 28 2008 at 9:34pm
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Hi- I am stage 2 no nodes involved and 39 years old. I had 4 rounds of dose dense Adriamycin and Cytoxan every two weeks and then 4 rounds of Taxol, also dose dense every two weeks. I finished chemo on April 22 and then started radiation 2 weeks later. I have now completed 15 treatments of radiation and 15 to go- half way done! I am in the San Francisco area and the women I speak to all are doing the same as me. Maybe it is the standard here for Triple Negative. I am having 30 (6 weeks) treatments of radiation. This seems to be what everyone gets, but is it different for Triple Negative?
Good luck with your treatment and I will keep you and all the other survivors in my thoughts and prayers.
All the best,
Katie
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Posted By: Betty Trouble
Date Posted: May 29 2008 at 4:59am
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Alright, this may be a dumb question but I'm asking it anyway!
I've noticed a lot of posts with bilateral mastectomies. Was this because you had tumors in both breasts or was this a choice - or a recommendation from your docs - given the aggresiveness of TNBC?
The reason I ask is that I'm doing neo-adjuvant chemo and have 4 weeks to go. It's surgery decision time soon. I have 2 tumors in one breast that are far enough apart that will leave a pretty deformed breast that will be difficult to reconstruct if I go with a lumpectomy. Plus then there's radiation - ugh. So I'm pretty sure I'm just going to go with a mastectomy. Hopefully I can avoid radiation going that route but of course I won't know that until the pathology comes back post surgery.
Also, I talked to a reconstructive surgeon that won't start doing anything until 2 months post mastectomy. Is this pretty standard?
Just curious what choices others have made.
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Posted By: Beth Anne
Date Posted: May 29 2008 at 6:22am
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Hi Betty,
I did both because I am young well kind of young 46 and I wanted a matched set... and as it turned out this was a good idea as the path showed that cancer had started in the other side at the cellular level.
I see that you are also in Seattle and I tell you it was hard to find a reconstrution surgon and a breast surgon that were willing to but in exspanders at the time of surgery making the entire reconstruction eaiser, just 2 surgerys one the mass. and one to put in the perment implants.
For me to get this surgery done the way I wanted I had to put my foot down and tell them my way or I wont do anything... Hey and what do you know they could do it after all
 If you need any doctors names I would be happy to give them to you. My reconstrution surgon is a breast cancer survior and is the most amazing woman I have ever met.Good luck with all of this and let me know if I can help you with any doctors names and numbers
 Take care,
Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: hubby
Date Posted: May 29 2008 at 8:12am
Hi Sadie, Yes. Portland Oregon |
Sadie Rose wrote:Posted By: trip2
Date Posted: May 29 2008 at 9:55am
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Hubby,
So glad that tumor is not to be seen.
 Hooray is right! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: susanb
Date Posted: May 29 2008 at 11:50am
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Bette; I was offered a lumpectomy and I insisted on a mastectomy, and my surgeon said that if I was going to take off one than I should do both. Why did I go with the mastectomy? Dx at 46 with a mother and grandmother who died of reoccurring breast cancers I didn't want to take the chance of cancer returning in my breasts (my mammogram was negative even though I had a 1 cm tumor). Not excited about the reconstruction (I have silicone implants) but that's another story. I figured that I couldn't afford (both health wise and financially) to have breast cancer again so off they went. Or as my husband puts it "your tits were trying to kill you so they had to go". I've also had all the girly bits removed- a total hysterectomy as that there is some thought that my grandmother may have also had ovarian cancer. Everyone has to come to their own decision about their treatment but I do not regret my mastectomy for a minute. Susan DX at 46 (2 years ago!) TN grade 3 ki-67 at 54 negative nodes clean margins 4 rounds AC bilateral mastectomy |
Posted By: sdreyer
Date Posted: May 29 2008 at 12:09pm
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My mom opted for bilateral just as a personal choice she only had disease in the left breast but said at 50 with BC she would rather be flat chested than lopsided since she does not want to go through reconstruction. We were surprised how cute she looked with no chest my sister and I asked the surgeon if we could get a family discount to have ours done too :) No more sweaty moons in the summer, can wear anything and don't have to worry about what bra to wear or if it is sticking out, can go comando all the time! My mom is almost 2 months post op and she is still great with her decision. Now we just have hurdles with the mets taking over. She was diagnosed in March and by April 15 we found out she had cancer in the left breast, lung, liver, clavicle and femur and just 2 weeks ago found out she has more in her skull and cervicle spine.. they didn't check her head when doing the bone scan we were told there is no treatment for it anyway so why look. Both the surgeon and the onc were surprised when all the mets showed up because of 7 nodes removed only 1 had disease.
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Posted By: Betty Trouble
Date Posted: May 29 2008 at 12:18pm
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Thanks, Beth Anne. Doctors names and numbers would be a big help. I'm happy with my surgeon (Clarfeld at Overlake) but haven't decided definitively on reconstruction surgeon yet. As for a matching set, I understand they will put an implant in the other breast to match the one they reconstruct.
I'd like to keep the surgeries to a minimum, obviously, and do the expanders at the time of surgery. However, can they do radiation with the expander if the margins don't come back clear after surgery?
I was sitting in chemo this morning mulling all this and thinking I do NOT want to go through all this again!
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Posted By: Betty Trouble
Date Posted: May 29 2008 at 12:26pm
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Now y'all have me thinking I should just lop 'em both off! I do want to reconstruct but at least I wouldn't be lopsided in the interim. I find myself staring at my bras when I do laundry and just shaking my head with wonder.
Guess I have a lot to think about over the next couple of weeks. Oy!
Thanks, everyone.
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Posted By: KatePV
Date Posted: May 29 2008 at 12:39pm
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Everyone has to make the right decision for themselves, so think carefully about it before you do it. I was so sad when I started radiation because they put tatoos on my breast and they will never look my saggy, breast fed ones. . they were not pretty to start with, but they were mine. I nursed my babies with them and now one looks very different from the other.
I honestly wished they would have removed both breast, but both the surgeon and oncologist said it was not medically necessary and if I wanted it later I could do it then. I got diagnosed and had the lumpectomy and sentinal node dissection within 4 days of getting my biopsy report back. Mine was grade 3 and they wanted to move right away. I did chemo and still have 15 more radiations to go. I think about having a double mastectomy daily. My mother had her 19 years ago and she is still with us. Maybe in a few months I will go back and have it done. I check my breast everyday wondering if there is another lump.
I turn 40 next Monday and am so sad to be 40, bald, no eyelashes/eyebrows and fat. I used to be pretty with nice blonde hair and the little bit of hair coming in is grey! how did that happen? I guess I should be thankful that I am alive and have 7 children and a husband who needs and loves me.
Good Luck with the decision you choose, but don't wait too long.
Katie
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Posted By: Beth Anne
Date Posted: May 29 2008 at 12:42pm
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Hi Betty,
Yes they can do radiation with expanders in... with that being said there are not many Radio onc's out there that are willing to do that. I am going to start radiation next week, I will be going to Dr.Mehta at Swedish Cancer Center he is one of the only ones that is trained on how to do this with the best results.
I made sure I had all of my doc's all on the same page to work together. I started by going to the Radation Onc's and made sure that he was willing to do radation with the expanders in... Then went to the breast surgon to let her know that I had the Radation onc on board, then madee sure she was will to let my reconstruction doc place the expanders... the I went to the reconstruction doc and let them know I had all of the other doc's lined up and ready to go if she aggreed.
Now this all might have worked out eaiser because all the doc's work at Swedish, I know in Bellevue they are not all so alined or so I have herd.
I will send you a priviate message with my phone number if you want the phone numbers of doc's at Swedish..
Take Care,
Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: Betty Trouble
Date Posted: May 29 2008 at 1:07pm
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Thanks, I have heard really good things about the folks at Swedish too. Things being relatively equal I opted to go to Overlake since I live in Bellevue which makes things more convenient. The reconstruction guy I have been considering is at the Polyclinic on Capitol Hill. Katie, I sympathize with you as I'm in the same spot. Bald with about 6 eyelashes and 10 eyebrows. I hate looking in the mirror. The 'duck down' that is starting to grow back on my head - I can't really tell what color it is yet so I prefer to think that it's blond and not gray. I'm single, so this is all so hard. Toss in hotflashes because chemo threw me into menopause and this is just the pits. The weight gain is hard but I am hopeful that once I'm through the chemo I can start to exercise more. Walking and yoga are great but they don't seem to be enough. But, it is what it is, and I'm alive. :)
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Posted By: Beth Anne
Date Posted: May 29 2008 at 1:20pm
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Hey Me again.... The guy at the polyclinic is good at his work but has a crapy bedside maner... my onc warned me about him saying "nothing warm and fuzzy about that one". My OB in Bellevue, also told me how good his work was...
Dr. Miles
 (at Swdish)on the other hand has had breast cancer and has been through the surgery.... so she gets it. I understand wanting to be close to home, I go into Swedish from Snohomish... Yeah looking forward to next month starting 7 weeks of radation and doing that drive everyday
 with gas being $4.05....Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: Betty Trouble
Date Posted: May 29 2008 at 1:28pm
| Yeah, gotta admit I was not super impressed by his bedside manner but I have heard great things about his work. And have seen some of it too. On the plus side, apparently he works quite well with my surgeon so I guess there's something to be said for that. |
Posted By: Beth Anne
Date Posted: May 29 2008 at 1:33pm
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Betty,
Keep in mind you will be seeing him for all follow up's and expanding...
Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: Possum
Date Posted: May 29 2008 at 4:13pm
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Hi Betty,
I had breast conservation surgery for a stage 1 (18mm) tumour and am currently having chemo. I will have to choose in the next 6 weeks or so if at the end of the chemo i wish to proceed with 4 weeks of radiotherapy or have a bilateral mastecomy and reconstruction.
This has come up because of the type of tumour (TN and basal features confirmed by the histological staining of markers in the tumour) possibly being linked to an inherited BRCA1/2 mutation. Even though I do not have a strong family history of Breast Cancer I have elected to be BRCA tested. If it turns out I carry the mutation then I will most likely opt for bilateral mastectomy and oophorectomy due to the increased chance of developing another cancer. If it turns out that I do not have a BRCA mutation then my Drs have offered my MRI scans as screening tests if I elect to keep my breasts.
The choices are not clear cut and usually very personal and individual but having as much information as possible helps I think.
Possum ------------- TN G3 Stage1,dx 22/02/08 SN bx (3 neg nodes) Tx FEC100(3cycles),Taxotere(3cycles) BRCA1 Unclassified Variant |
Posted By: kirby
Date Posted: May 29 2008 at 8:37pm
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Christie,
I only had 4 treatments of AC. That was protocol then. Dose dense wasn't being used yet either. This was 2001. I have sometimes read how much chemo they are giving now for comparable dx and it is hard to have faith in "did I get enough". Then I have to find my place of logic and tell myself I can't change what has already happened and I am 7 years out from dx. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: CarolinOmaha
Date Posted: May 30 2008 at 3:46am
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Betty,
I did a bilateral although my tumor was only in one breast because I had also been told it was easier to match them afterwards. But even more importantly, my breast cancer was discovered while preparing for breast reduction surgery. It didn't make sense to remove one and then have the other still reduced - why not do both at the same time.
My tx. was cytoxan & taxotere - my insurance wouldn't approve any of the platinums or even Xeloda which I had asked for because it was adjuvant therapy for me. ------------- May your heart always be joyful, May your song always be sung, May you stay forever young. |
Posted By: trip2
Date Posted: May 30 2008 at 4:05am
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Sdreyer what was your mom's pathology at diagnosis? I noticed you said she had only one positive node. She's got a battle on her hands but sounds like she has a loving family to support her.
Everytime I read about the spread your mother has I am amazed. Was she good about getting her mammos every year? I wish I could give her a hug.
Going flat chested does have it's good and bad. My surgeon told me there was no going back, wanted me to atleast talk with a plastic surgeon but even last year I was not aware they could do it all at one time. I didn't want anymore surgeries so went w/the mast and to be honest I regret it.
It is just so final! Of course I'm not talking about the ladies who have no choice in the matter.
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 30 2008 at 4:17am
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Good morning Possum, I was reading your post with interest and came to the part where you said your tumor was basal. Was this on your path report or did they test it separately? Whether or not you are basal atleast for now seems to play a big role in this trip neg situation. I would like to find out how you can get this done. I had read it had to be done by a special test.
Yes having all the information you can, doing your research, asking questions will help you to make that decision which as you said is very
personal and one you have to make yourself. You will have time to think.
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Betty Trouble
Date Posted: May 30 2008 at 4:41am
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I just wanted to say a couple of things to the group. You are all amazing! I'm not a support group type, but these forums - and this one in particular - are so very helpful in understanding the many, many ways this treatment can play out. It's dizzying to think about, but hearing what you all have been and are going through is so much more helpful in some ways than standard research.
For all the junk that's out there on the internet, it's also a great vehicle to unite so many of us. When I have my 'woe is me' moments - and I do! - I'm grateful to draw strength from women who have been through this and kicked it's a**. It reminds me that we're all stronger than we think we are.
So a hearty thanks for taking the time to share your stories.
Happy Friday!
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Posted By: Beth Anne
Date Posted: May 30 2008 at 5:02am
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Hi Pam,
I didn't have any special test's done it was just in my Path report and showed up on the breast that wasn't known to have cancer, when I asked my onc about the meaning of basil cell found in the other breast he told me that it was the beging of the cell's turning to cancer.
Although there has been a lot of information come out about the importance of basil cell's and TNBC....
Not sure if that helps answer your question or not....Happy Friday
 Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: trip2
Date Posted: May 30 2008 at 5:13am
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Thank you Beth Anne,
Yes it does help. I couldn't find a thing mentioning basal on my path but will look again.
My Onc didn't understand what I meant when I asked him about mine being basal or not.
 I tried explaining and he got irritated with me and I could tell it was the end of the visit.- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sdreyer
Date Posted: May 30 2008 at 10:29am
Pam .. Her doctor really didn't go into pathology detail other than DCIS ( which is one of the reasons we are finding a new onc) but my mom was good doing her mammos until about 3 years ago when she lost her insurance(loss of job) and up until then she was all clear she found her lump in the left breast june of 2007 but again no insurance she was trying to get insurance at that point and she didn't want a diagnosis to keep her from getting insurance then my grandpa had a heart attack and while he was hopitalized with that and we were all caring for my grandma who passed away while grandpa was still hospitalized.. this year has been a whirlwind of events
 Anyhow in February this year I found a cheapo insurance for my mom and it only covered "well " visits so after she got the mammo done I found the Show Me Health Women program in Missouri that helped with all the finanacials and now it has flipped into state medicaid with the BCCT program. When I found this program I was blown away that doctors or hospitals don't make them known. Too many people put off or can do these test for lack of insurance and there are these programs out there that nobody tells you about.. it truly is sad . Anway back to the pathology he told us DCIS and triple negative that's about it. I have requested all of her medical records to put in a book and to bring to the new doctor. And since my sister and I take turns with the doctor appointments I went out the other night and bought a voice recorder so that all doctor sessions could be taped for future reference in case we don't understand something or forgot something we have it. (we should have done this to begin with) my mom doesn't listen to the doctors when we go she just kind of zones out so we are her voice and ears.
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Posted By: trip2
Date Posted: May 30 2008 at 11:33am
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Sdreyer, I am so terribly sorry to hear about your grandparents. It sounds like you have got things under control now for your mother.
Great idea on the voice recorder and having an extra set of ears.
Also would like to say it is a definite that you get copies of everything that has to do with your mother's diagnosis, scans, reports, path reports, whatever it is and so that you will have this to double check or make copies for other doctors.
You sure have been thru alot. Being a caretaker is hard and it takes a toll on them too. It's nice you will have your sister to help.
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: paula
Date Posted: May 31 2008 at 9:49am
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I had 2 cycles of CEF every 3 weeks. I developed Capiliary Leakage Syndrome - Doctor's removed me from chemo. Told me I could not take chemo ever again. Had almost all of the nasty side effects. Just one of the lucky few.
Hope your treatment goes well ------------- DX Feb 4, 2004 Lft NST IDC, 1.1 x 0.5 x 0.4 cm, Stage 1, GR 3, 1 of 17 nodes CEF 2 of 6 cycles 30 Rads w 6 boosts Regina, Sk Canada |
Posted By: Beth Anne
Date Posted: May 31 2008 at 10:15am
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Hi Pam,
Funny how they get irritated when they don't have answers
Mine got irritated at me for getting so sick from the Navelbine he just kept saying this dosen't have that side effect... Then I brought him the print out from the drug company that stated every side effect I had...hummm. If you look on the internet for basal cell's you can get some good information... When I first saw it on my Path I thought hummm... skin cancer???(taking me back to a month I spent in Barbados in 1981 lying on the beach every day with baby oil for sun protection???
 ) because that was the only time I had heard that before. My sister who works in the medical field told me that a basel cell is a cell that is beganing to form with irragular edges ie: typical signs of cancer cell. Again then my Onc and Rad Onc said that it was the first sign that the cancer was spreading. Now I haven't brought up any of the new information about basal cell and TNBC with my onc... he is still recovering from his irrataion with me being sick... so here to hoping that I won't have any side effects from the radiation I start on 6/4 ummmm.
Have a great weekend,
Beth Anne ------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08 Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV CK3/09.Brain resection4/09 WBR Dreaming of dancing with Ned! |
Posted By: trip2
Date Posted: May 31 2008 at 1:45pm
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Yeh Beth Anne, like we make all this stuff up? Shame on you for getting sick from Navelbine, that wasn't supposed to happen Stay on the guy.
Geesh these guys/gals in white coats ought to fess up and admit maybe this SE or that SE wasn't in the books but didn't they teach them that all of their patients are different??
I tell ya Beth Anne, my eyes are about to cross reading about basal.
They seem to be squabbling amongst theirselves, (the researchers, scientists) not agreeing on what it is and how to test it and treat it.
If they can't come to a conclusion on these things what in the world are we supposed to do meanwhile? First there was basal, then I read it was 2 kinds of basal and then I read 5. Subgroups in subgoups.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Jun 01 2008 at 12:29pm
Hey Emily, Did you ever get in touch with Dr. Smith? I spoke with him a couple of days ago regarding my sis, he really knows his stuff....almost as much as us ! He take lots of time and he's got great assistants. He was saying Avastin w/ AC+T is getting good results.
Ronda ------------- 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 |
Posted By: Milly
Date Posted: Jun 02 2008 at 3:28pm
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Hi Everyone,
I've recently been dx'd w/metastasis bc that has moved to my pelvis, lumbar spine, under both arms, collarbone & neck. I was on remission w/Tamoxifen since August 2005. I learned today that I'm TN and frankly I haven't heard positive things about it so I'm finding it scary. I see my Onc on Wed., 6/4 to discuss a plan of treatment. From this forum I've written down the different treatments such as carboplatin/taxotere, carboplatin/gemzar, AC/Taxol, ACT, carboplatin/cisplatin, etc., which I plan to discuss with my Onc. Does anyone know which works better? Thank you.
Breast Wishes,
Milly
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Posted By: lisab
Date Posted: Jun 03 2008 at 11:22am
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Dear Milly, I am sorry you are having to face this. I'm triple negative and have recently been diagnosed with mets to the chest wall. I was on carboplatin/gemzar at the same time as radiation. My onc and rad onc told me that was a good treatment plan and I didn't even lose any of my hair. However, I believe each one of us is very different and what works for one may not for the other. I wish I could give you a more definitive answer. Please keep us posted and good luck with your visit to the onc.
Lisa B.
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Posted By: trip2
Date Posted: Jun 03 2008 at 1:35pm
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Milly I am truly sorry that this has happened to you.
You might want to post on the recurrence/metastasis forum for up to date info. Good for you for researching and being prepared for that Onc visit.
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kimm
Date Posted: Jun 04 2008 at 4:28am
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I opted for a bilat mastectomy when my cancer was only in the left. It was my choice. I was a 38 DD and the thought of trying to match an implant to this size didn't make sense. ironically i saw a plastic surgeon one month before i was diagnosed to schedule a breast reduction (be careful what you wish for). i also didn't want the stress of constantly wondering what was growing in the other breast.
my plastic surgeon put chest expanders in at the same time as the mastectomy and i go to the md every 6 wks for "fills". when you are at the size you want to be, they will take out the chest expanders and put in implants. by the way, just because you have a mastectomy does not automatically exclude you from radiation. I had both and the radiation wasn't bad at all so don't worry about it.
I am very happy with my decision to do a bil mastectomy. whatever size i end up being, at least I will be the same bilaterally
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Posted By: KCinFL
Date Posted: Jun 04 2008 at 4:40pm
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Hi everyone, my sister was just diagnosed with stage 3 TN. I haven't seen anyone indicate that they are on cyclophosphamide. Her onc told her that they've been having success with this. It's for ovarian cancer and leukemia. Have you guys heard of this? KC |
Posted By: billie
Date Posted: Jun 05 2008 at 4:38am
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Hi KC, Please do not be dispared,someone is going to answer your question.I too am the sister to a tnbc patient.
When I first signed up with this bunch of strong and wonderful women,I felt that because it took a while to get a response,that no one was going to respond to me,the sister.But that is in no way true.
Yesterday there was a teleconference about bc and they were suppose to also discuss tnbc and many of the ladies were linked to that.
Post again today and let them know that you need HELP.They will come running with there arms open.I promish you.
HuGGGGGGG'S Billie posting for my sister Betty
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Posted By: Terri
Date Posted: Jun 05 2008 at 5:22am
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Hi KC,
I also live in FL. Was diag 8/07 with stage 1 TN. My onc gave me 6 treatments of FEC which contains : cyclophosphamide, epirubicin, and fluorouracil. Their brand names are cytoxan, ellence, & 5FU. He said this is a good treatment for women with 3n but I haven`t seen alot of women on this site who have had it. I`ve seen alot of women treated with AC (which is adriamycin (spelling?) and cyclophosphamide. Both A and E are in a class of drugs called anthracyclines that can damage the heart. E is supposedly less toxic to the heart, so since I was only 41 @ diag my onc gave me that drug. Everything really depends on her specific pathology & what her onc has experience with, etc.
It`s all very overwhelming at first. I`m sorry you and your sister have to go through this but it`s great you are there for her. I wish my sis had been more!
Feel free to ask questions and you should get answers and support here
------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Nancy Bell
Date Posted: Jun 05 2008 at 5:40am
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Hi. It is so good of you to help your sister with the research. My sister-in-love(law) was and still is my biggest support person. Although I am the researcher, she was with me for every chemo session. A real blessing to not only me but all the patients that were there on those days. cyclophosphamide is the same as cytoxin which a great many of us have had, usually in combination with adriamycin. It has been the standard treatment. When you see AC & T which was what I had, the C is cytoxin. I had 4 infusions of AC followed by 4 Taxol. Finished in Feb 08. Followed by 35 radiation sessions. I completed treatment May 2,08. Just had a PET scan Tues and go in for blood work next week so we will find out how well it worked. You can get info on all of the chemo drugs at chemocare.org This forum is a wonderful place for support. Let your sister know that she is not alone and that we will be praying for her ( & you).
Nancy
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Posted By: English Jan
Date Posted: Jun 05 2008 at 6:33am
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Hi KC Please see my post 27 Nov 2007 .. I had Cytoxan. Hope this helps. Keep us informed with good thoughts. English Jan in Florida ------------- FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008. |
Posted By: KCinFL
Date Posted: Jun 05 2008 at 4:15pm
| Thank you all so much for the information, and for the website on chemo. My sis started chemo yesterday and is on cyclophosphamide and doxarubicin. Right now she is very overwhelmed with all of the appointments and lingo, but I'm sure I'll convince her to come here to post and read up on treatments. I'm sure you hear this all the time, but I'm so thankful that I found you all! Thank you for the prayers too, they are especially appreciated. KC |
Posted By: SusanU
Date Posted: Jun 06 2008 at 4:24am
| Hi - I too just finished 6 rounds of FEC for TN and you're right, I don't see much of that being taken on this site. I also had 21 radiation treatments following the chemo. |
Posted By: Keynote
Date Posted: Jun 06 2008 at 6:30am
| I had FEC, once every three weeks, 6 X's. I am in a clinical trial. My onc. said it has been used a lot in Europe. |
Posted By: Terri
Date Posted: Jun 06 2008 at 10:37am
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SusanU and Keynote, I am relieved to see some others who have had FEC like myself. I was starting to second guess my treatment since I have been finished. My onc told me that this tx is commonly used in the U.S. & Europe but hardly anyone on this site had it! Can I ask you what stage , any node involvement, and your ages? Just want to compare to my info.
Thanks!
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: AustinJulia
Date Posted: Jun 06 2008 at 8:01pm
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Terri, I had FEC for my stage 2A cancer, no nodes, grade 3, tumor 2.6cm, diagnosed in 2003. I was 39 and am now 44. I drew that treatment plan on a level 3 clinical trial. So far I am doing fine. I am in permanent menopause though and i did get a thyroid condition as a result. But I am still here and that's all that counts!
I hope you did ok on your treatment plan.
Julia
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Posted By: Adrea
Date Posted: Jun 06 2008 at 9:48pm
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Good Morning - It is 1:36am and I cannot stop reading these posts. I was unable to listen to the telecast as I was receiving my first Zometa treatment and trying to see my plastic surgeon and trying to hurry up a -no way on God's green earth do we hurry- system. Hope to catch up on that some way.
I received 3 FEC and 3 Taxotere and then opted for double mast after much research. I am in the process of fills as we speak. I call it reconstriction, not reconstruction as it puts quite a squeeze on you at times! No rads. I am in a clinical trial so taking Zometa as a preventative. No mets at this time. I ran a 102 fever the day after first treatment so not looking forward to more. Hugs to everyone and God Bless, Adrea |
Posted By: SusanU
Date Posted: Jun 07 2008 at 5:24am
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Hi Terri - I just had my 44th birthday - married, mother of 4 great kids - 11, 13, 16, & 17. I was diagnosed in Sept. 07, had a lumpectomy in Oct.
Nodes were negative, 2.1 cm lump with no evidence of vascular involement. Because of the size being over 2 cm, my surgeon said they had to call it a stage 2 but he said he personally would rather have one like mine than a tumour less than 2 cm with lymph involvement and be a stage 1. I had 6 rounds of FEC which I tolerated very well and then 16 radiation treatments to my whole breast, followed by 5 treatments to the scar. Just finished my radiation on Tues. so my breast is still very tender and my energy level is low but really happy to be home!!
Glad I found this forum, it wonderful to talk to people in the same situation. Susan xox
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Posted By: Keynote
Date Posted: Jun 07 2008 at 6:24am
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Terri - Like Julie, I had FEC for my stage 2A cancer, no nodes, grade 3 tumor. My onc refered to it as CEF, but I'm pretty certain the initials stand for the same stuff. My tumor was 2.4cm and I was diagnosed in 2006. I was 56 and am now 58.
I drew that treatment plan on a clinical trial. So far I am doing fine and all docs are watching very closely. My toughest side effect is Chemo-Brain. But as someone said - I'm still here.
 Keynote
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Posted By: Terri
Date Posted: Jun 08 2008 at 4:40am
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Julia, I am wondering if the menopasuse is permanent. Haven`t had a period since Dec (a month after chemo started). The hot flashes have really sucked & the fact that I was a 40 when I got married for the first time & my husband and I were just starting to talk about whether we wanted a child- then the diagnoses took that decision from us. I try to think everything happens for a reason so maybe a child wasn`t meant to be since we were kind of on the fence about it anyway. We both love animals and have cats and dogs so maybe are meant to share our lives with furry kids! Susan, Congrats on finishing radiation! I slathered my radiation area with hydrocortisone cream as often as possible even for about a month after my tx`s ended. My onc said it really made a difference in my skin. Now he has me putting lubriderm on everyday (for the rest of my life). It`s been 6 weeks since my last radiation and the area is finally not as itchy as it was. Keynote, I know what you are saying about the chemo brain! I dare to say it is getting a little better but I really have to concentrate on single tasking when I am at work. No more multi-tasking! I am supposed to have mammogram & bloodwork for tumor markers every 6 months for 5 years. No scans until year 2 or 3 because my onc says that`s when my chances for recurrence are highest. I`ve noticed alot of women here have had scans at the end of chemo. Anyone have a doc that agrees with mine? Terri
------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Terri
Date Posted: Jun 08 2008 at 4:44am
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Julia,
That`s the first I`ve heard someone developing a thyroid condition from chemo. I hope it`s under control for you now. ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: AustinJulia
Date Posted: Jun 08 2008 at 5:10am
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Terri,
I wondered for about a year after treatment whether my menopause was permanent. I did have a little spotting about 6 months after chemo ended but after that nothing. It's been almost 5 years now and I honestly don't miss having periods! But the hot flashes continue, especially at night. Of course they won't give me HRT. Another option would be holistic, but that approach isn't exactly drug free as herbs are really drugs too. Another problem I encountered due to menopause was an increase in UTI's because of the drop in estrogen. I was already prone to them before and lovely menopause can make it worse. Seems to be better lately though.
I have been told that the thyroid condition is common after chemo, but I was never told that until I discovered the condition myself. I wasn't experiencing any symptoms that were obviously pointing at that, but I was at the doc getting blood work done for something else and happened to read an artical about thyroid symptoms at the docs office and asked them to run a check on it since they were already pulling blood. So now I take thryroid meds for the rest of my life. It's fine, just another thing to add to the list!
Being a mom to furry kids is very fulfulling too. I have cats and dogs who always keep me company. And they don't sass me like my girls do! Summer just started and i am ready to send them back to school!
Take care!
Julia
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Posted By: Terri
Date Posted: Jun 08 2008 at 6:18am
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Julia,
There are so many things you find out on your own that the Dr`s never tell you (like your thyroid condition). I think there are so many side effects and so many patients they can`t remember to tell us everything! Frustrating sometimes.
Wow, I was hoping the hot flashes were on their way out. Sorry to hear you`re still having them. But I`m thrilled to hear it has been 5 years after c and you are here and doing well!! You are an inspiration and just what I needed !
Take care, Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: kirby
Date Posted: Jun 08 2008 at 8:45pm
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Terri,
I am 7.5 years from dx and have never had a scan or blood test. My onc doesn't believe in them for the purpose of regular checks. Too many false positives/negatives, anxiety over #'s etc. that he doesn't use them on a routine basis for this purpose. I have quized him several times, when I always read so many others posting about getting them. I am satisfied with his answers. I may not have explained it very well. I feel it is information I need to know for the moment, not retain. I was checked 6X a year up for the first 5, Then for the last year it was 5X, now it is down to 4.
------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Terri
Date Posted: Jun 09 2008 at 5:02am
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Kirby,
My onc says that all the radiation you are exposed to during a cat or pet scan can actually cause other cancer if done too many times. He also agrees with your Dr that there can be alot of false results. So you got checked 6 times a year for the first 5 years? As I said, I am getting checked every 6 months, meaning only twice a year...big difference!
I`m so happy for you that you are 7.5 years out from dx. Thanks for being on this site and helping women like me who are not even a year out from dx. ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: kirby
Date Posted: Jun 09 2008 at 6:07am
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Terri,
Seems to me, your oncs response about exposure is something my onc has brought up as well. It is confusing when so many get scans etc. with such regularity. I was checked 2x a year by the surgeon, 2 x a year by the onc, 1 x by the radiologist and 1 x by the obgyn. At 5 years the check with the radiologist stopped and last year the check with the surgeon went down to once a year. I am surprised at such continued follow up. I used to be resnetfull at all the DR. visits and of course, expense however I rearranged my thinking after someone stated "the more they were checked, the better they felt". That sure turned it into a nice positive and it does make one feel more confident being checked because as I told my onc "by the time I notice something, it is too late". ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: djinfl
Date Posted: Jun 09 2008 at 7:36am
| My Girlfriend's daughter had #N and in fact was pregnant when she was DX. After her Chemo she got the advice of a natural homeopathic Dr and has since had normal cycles and has had 2 more very healthy children. So it is possible to go back to a normal cycle after chemo and have children. |
Posted By: LindaSue
Date Posted: Jun 09 2008 at 7:54am
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Hi all! I was diagnosed 1/07 with TN bc. They thought I had 2 tumors but the second tumor turned out to be a cancerous lymph node IN my breast (intramammary lymph node). It's fairly rare to have lymph nodes in your breast. It is also another factor that says I have a worse prognosis than average.
I am treated in Seattle at the Seattle Cancer Care Alliance. They gave me 12 weekly treatments of Adriamycin and cyclophosphamide followed by 12 weekly treatment of Abraxane (new taxol formation - it was a clinical trial).
I suffered severe nerve damage to my feet and hands from the taxol. Has anyone here had that side effect?? Im afraid this is for the rest of my life. I finished chemo 9/07 and still have severe numbness, burning, and stabbing pains. It's just awful.
I'm so glad to find this site!!! I wish you all the best. Linda
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Posted By: CarolinOmaha
Date Posted: Jun 09 2008 at 8:52am
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Hi Linda Sue,
Welcome to our group - sorry you have to be here but you will learn alot and find wonderful support here.
I just wanted to tell you that I had terrible hand/foot nerve damage (hand/foot syndrom) from Taxotere - it was horrible. I completed my chemo which was just CT at the end of March and will tell you that most of my nerve damage has gone away. I also had some neuropathy in one foot around my toes and still have a bit of that but it too, is almost gone.
Are you sure they said the damage would last forever? I know sometimes that can happen but certainly not always.
Hope you get some relief from that soon.
Carol
------------- May your heart always be joyful, May your song always be sung, May you stay forever young. |
Posted By: billie
Date Posted: Jun 09 2008 at 9:03am
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Hi Linda, A couple of weeks before my sisters first chemo treatment we started her on neurontin prior to her first chemo antisipating the nerve ending thing.So far she has been very lucky in having none of these symtoms.
I have read at least one was taking lyrica(also a kind of neurontin)I know that this works because I have a friend that had both feet crushed in a car wreck and through the years the nerve endings in her feet were beginning to really cause her severe problems.Her Dr. put her on neurontin and she will tell you now that it was a god send for her.
Also my sister asked for Emend for nausea when she first started chemo and she so far is doing just wonderful.She was never given Aloxi.No one needs headaches. I have a feeling that the brand that you are given for different treatments,has to do with the type of insurance that you have and what is on their list.But it never hurts to ask for something else,if what you are taking is not agreeing with you.
God Bless You and Keep You All and Lots of Huggggg's Billie posting for my sister Betty
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Posted By: AustinJulia
Date Posted: Jun 09 2008 at 9:08am
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Terri, I wish there was more evidence about whether women like you and are would go into permanent menpause before we started chemo. That is a question I posed to my team of doctors at the time and spent a lot of time repsearching, but there were little statistics other than that they felt I had a 50/50 chance of going into permanent menopause. But that wasn't based on the chemo regimen I was on, just a general guess. I am done with our family planning, but what about women who want the chance to possibly freeze some eggs before they start the treatment? I am wondering if they don't do much study of this particular side affect along with the many others because they don't want any women to have any more reasons to not go through treatments. I think the same can be said for heart conditions. Some women end up dying 20 yrs later with CHF but there is always discussion of a link between chemo and that, but very little research is done to prove or disprove this.
Well anyway, thanks for listening to my rants. This issue really bothered me 5 years ago, but I had put it out of my mind. There should be more discussion though.
Blessings,
Julia
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Posted By: AustinJulia
Date Posted: Jun 09 2008 at 9:15am
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LindaSue,
My sister had the neuropathy issues from Taxol. It is 5 years later and those pains went away within the year after her first round of treatments. Unfortunately, her cancer came back, but she is Triple Positive ( is that what they call themselves?) and tamoxifen and arimidex didn't work for her. She's stage 4 with mets to the lungs. So those wonder drugs don't mean the world to everyone, unfortunately.
Take care and I hope you feel better!
Julia
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Posted By: Nancy Bell
Date Posted: Jun 09 2008 at 11:15am
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LindaSue,
I was dx'd in Aug. 2007 and when the surgeon removed the tumor there was a postive intramammary lymph node in the tumor site. There is another gal here on the site who just started chemo last week who had the same thing. We have been trying to find info on this but there isn't much out there. It doesn't happen very often. My surgeon had never seen this before. I think I'll start another thread again about this since there alot more members than there was the first time I asked. Let's see if we can get an idea of how many 3neg's have had this come up.
I finished chemo in Feb 2008 and have the neuropathy as well. Some days are worse than others. From what I've heard it can take a long time for this to go away and a chance that it can be permanent.
 Nancy
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Posted By: Nancy
Date Posted: Jun 09 2008 at 11:25am
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Hi Nancy,
Nancy here (Lori's Mom).
Lori's last chemo was day after Thanksgiving, and it wasn't that long ago that she was still experiencing problems possibly related to Taxotere? She said that when she would get out of bed in the morning it was all she could do to walk. She had to hold on to something as she got up and as she walked to the bathroom. Haven't heard her talk about this for a while, but then unless I ask about a specific thing, she forgets to tell me.
She did not have the dx you had.
Nancy
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Posted By: Dawnk
Date Posted: Jun 10 2008 at 7:14am
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Terri..I too was just making the descision whether or not to have a kid...then diagnosed...stage 1 grade 3 no nodes..the oncologist I didn't like and got rid of suggested meeting with a family planner to freeze some eggs or to trick me into menopause to bring me back out after treatment.. I decided that it was more to live than worry about the kid now at 43...It's done for me..but I am going to get my "mothering" from different areas...
I had 4 taxol and still have numb toes.. not like they are asleep..but numb and the circulation isn't so good either..hot flashes are miserable but I too enjoy the no period thing...I was joking the other day...gosh I wish my period would come back and a fellow said...well thats the first I have heard that unless you were worried about being prego! ------------- Stage 1 Grade 3 Lumpectomy 7/07 Trial Partial Rads 8/07 Chemo 4AC 4Taxol finished 12/07 |
Posted By: Terri
Date Posted: Jun 10 2008 at 8:38am
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Dawn
I`m sorry you were in the same place I was. It seemed that the issue of fertility wasn`t a concern for my onc. I had to ask about the effects of chemo on reproduction. Then he was like you better hurry & decide what you`re doing kind of attitude. I initially was going to consult a specialist but after reading up on freezing eggs & embryos it just seemed too much to do w/o any guarantees. My husband & I also felt, like you stated, that MY life was our #1 priority.
I am enjoying not having a period but the hot flashes are terrible! My other concern about going into menopause was that my mom & aunt started having Rheumatoid arthritis during menopause. my mom also has lupus. I have enough to deal with, I don`t want to have premature menopause with RA & lupus!! ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Terri
Date Posted: Jun 10 2008 at 8:44am
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Julia,
My surgeon didn`t even bring up the issue of family planning & my onc talked about it briefly only after I brought it up. He said with my age (41) and chemo regimen (FEC x 6) it would be a 70% chance of permanent menopause. I felt really trapped w/o time to make decisions & not many options. Then I thought I wouldn`t want to be selfish and be a mom with a chance of dying in a few years. It was all very overwhelming. ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: billie
Date Posted: Jun 11 2008 at 7:05am
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Hi Kimm, My name is Billie and I post for my sister Betty.
Boy, you have made some wonderful decisions and my sister and I can very much understand the big breast.
You sound so upbeat about your decisions you have made.That is wonderful to hear.If there is one thing trip 2 has taught a lot of these women,you have to not look back about the decisions that you have made and only go forward.
Do not feel that no one has read your post or that no one has benifitted,because believe me every one on this website takes away a little info. from each other.I posted on here,like you a few days before anyone acknowledged me and I thought no one wanted to hear any thing that I had to say,but not true.Miss Pammie(trip2)will be welcoming you very soon.
Kimm ,these women are so busy,every day there are 1,2,or3 that join.What a wondeful place to come to try to find answers or to help others.The amount of TNBC ladies being diagnosed everyday is a very scary thing.So any questions that you might want to ask please feel free to do so and I am sure that one of the wonderful ladies will get back to you.Hugsssssssssssss Billie
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Posted By: Dawnk
Date Posted: Jun 11 2008 at 7:16am
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Terri..thanks for responding...the option to take chemo or not seemed big enough than to worry about freezing eggs or tricking my system in menopause to trick me out of it later...and of couarse the $$$$$ and at 42 the odds of me getting prego anyway were pretty slim..
Lovin my yellow lab even more now!! ------------- Stage 1 Grade 3 Lumpectomy 7/07 Trial Partial Rads 8/07 Chemo 4AC 4Taxol finished 12/07 |
Posted By: Terri
Date Posted: Jun 11 2008 at 7:39am
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Hi djinfl
thanks for being positive and sharing about your gf`s daughter. How old was she when sh was diagnosed? How old when she had children after chemo? I hope she is doing very well with much health & happiness!
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Terri
Date Posted: Jun 11 2008 at 7:44am
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Dawn,
I know what you mean about your lab! I work for a vet & my husband & I are both animal lovers. All of our furry babies are either special needs or rescues that other people have abandoned. So being Mommy to them is a privledge! ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Ascott
Date Posted: Jun 11 2008 at 7:46am
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I am scheduled to start chemo tomorrow and have really been struggling with the decision to go with ACT or AT. AT seems to be a rarely used regimen but may spare me the early menopause. ACT is the standard protocal that everyone uses. I've only found 1 study that compared AC to AT and in the triple negative group there was a 3% DFS benefit to AT over AC. Has anyone used AT? http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=34&abstractID=30423 - http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=34&abstractID=30423
40 years old
Stage 1/1.4cm/Grade 3/no nodes
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Posted By: Dawnk
Date Posted: Jun 11 2008 at 10:09am
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I finished AC T in December. When I went in March for my 3 month checkup, the doctor said that C isn't standard protocol anymore for triple negatives...
it's up to you girl! ------------- Stage 1 Grade 3 Lumpectomy 7/07 Trial Partial Rads 8/07 Chemo 4AC 4Taxol finished 12/07 |
Posted By: AustinJulia
Date Posted: Jun 11 2008 at 12:20pm
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Terri,
I'm happy that you all of your furry friends make you so happy. I am an animal lover too and could see myself working for a vet someday too if I wasn't such an emotional sap!
Everyone is so overwhelmed at dx, it would be nice if docs had more universal info to give us about stats for menopause and pointed us to counseling before we even started treatment. As we see on this site, more women survive BC than ever before and should know all of their options before making decisions. The only counseling I had was from my surgeon, and that wasn't exactly warm and fuzzy, just presenting the facts. But he was a good doc, God rest his soul, he died of a brain tumor at age 43 a few months after I finished treatment. Who would have thought?
Interesting where life can take us sometimes!
Julia
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Posted By: trip2
Date Posted: Jun 12 2008 at 3:55am
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Hi Dawn, did I understand your post that your doc said that C isn't standard anymore?
How are you feeling after being finished? Got that ole energy back yet?
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Dawnk
Date Posted: Jun 12 2008 at 5:25am
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Yes...C isn't standard at Mayo anymore.
I am tired a lot of the time..don't know if its emotional or physical. Worried that the scar tissue in my breast is another lump..I do go the end of the month for a mammo and checkup so should get some peace there...ps I was the same way before my 3 month checkup.. ------------- Stage 1 Grade 3 Lumpectomy 7/07 Trial Partial Rads 8/07 Chemo 4AC 4Taxol finished 12/07 |
Posted By: trip2
Date Posted: Jun 12 2008 at 10:45am
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Well ya know Dawn it's probably a mix of both.
I'm glad you have a check-up coming soon, let us know.!
- ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jun 12 2008 at 10:59am
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Hello Kimm, I'm so sorry I have been late welcoming you to the group.
Thank you for sharing your story. I found it interesting.
My daughter is just finishing up her reconstruction next week and I'm sure she will be glad to be done.
That's good you are comfortable with your decision. It's such an emotional thing for a woman to go thru and that's good you are happy.
I had a blateral last year and still trying to adapt I'm afraid. I wasn't a large woman but still it has hit me hard.
Please vote in our poll if you like, we have some amazing women here for support or whatever. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ascott
Date Posted: Jun 12 2008 at 4:59pm
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Hi Dawn,
If cytoxan isn't the standard at the Mayo Clinic what are they using instead for early stage 3-'s? |
Posted By: PaminFL
Date Posted: Jun 14 2008 at 4:56pm
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This is not really pertaining to chemo... but it is a treatment for triple negs that I am probably going to be doing. I am believed to be triple negitive at this point and am awaiting to be screened for a clinical trial. I was told that before chemo starts, that I would be put on a "dialylisis type" of machine for about 4 hours where the machine will remove my blood, filter out the white blood cells then return my blood back into my body. At that point, they will make a vaccine with my white blood cells. Then while I'm going through chemo, they would inject my white blood cells directly into the tumor on my breast. My doc says it has a high success rate so far when being used to treat lung cancer. She says this might help from cancer reoccurance due to the fact hormones not working on those with triple neg. Here's more info that I found on the internet. http://www.dendritic.info/ - www.dendritic.info Anyone ever hear of this? What are your thoughts on it? Also, do you know of anything to help triple negs besides chemo, masectomy and radiation? Any help would be greatly appreciated! Pam |
Posted By: English Jan
Date Posted: Jun 14 2008 at 6:05pm
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PaminFl, Never heard of this one .. which area of Florida are you in? I'm in Englewood, 35 miles south of Sarasota. Intrigued ..tell more. How big is your tumor? Thanks English Jan ------------- FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008. |
Posted By: PaminFL
Date Posted: Jun 14 2008 at 6:46pm
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Jan,
I live in Sebring (middle of the state - about an hour east of Bradenton). I am being treated at Moffitt in Tampa. I am 34 years old and my tumor is about 2.8 cm with sentinial node believed to be positive for cancer (waiting for more results). I am stage 2 Grade 3. I will definately be starting chemo soon (not sure which kind - so much info to absorb). I just got my port in on Friday. The only thing about this clinical trial is that I believe they can only take people who are not already doing chemo - due to when they initially take the blood (white blood cells) they need for the white blood cells to be up (as that is what they are collecting) and being on chemo lowers these cells??
Pam
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Posted By: AustinCarol
Date Posted: Jun 14 2008 at 8:04pm
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Hi Pam, Cancer is dangerous because the cells are fast growing and spread and distrub normal organ function. Most cells in the body only "occasionally" divide. Chemo kills cells doing cell division which the cancer is trying to do a lot of. However chemo kill all types of cells doing division and some areas of the body is always doing a lot of cell division. Bone marrow is one part which does a lot of cell division too, so the chemo interferes with the red and white blood cell production. Then the cell counts go down. Every chemo session, they'll look at your blood count before the treatments. If they are too low, you will have to wait before the next treatment. Hair is also a rapid cell divider, which is why most chemos causes temp hair loss. The mouth lining is another, so chemo causes mouth sores. Saving blood cells for use later makes a lot sense. Any time the white cells count is "down" (too low), you can catch a bug disease easily. Should be an interesting trial. I hope it and the whole treatment work very well for you. Here's to being one who only has light & easy chemo side-effects.  -Carol ------------- 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 |
Posted By: KCinFL
Date Posted: Jun 15 2008 at 8:12am
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Pam, Moffitt is a terrific facility. I haven't heard of the treatment that you are doing, but please keep us posted on how it goes. Let us know what chemo you will be doing as well. I'm in Brandon, about 30 minutes outside of Tampa.
------------- Inherited BRCA1 mutation 5385INSC from my mom. Sister Linda dx with TNBC 5/23/08. Mom is a 22 year breast cancer survivor. |
Posted By: billie
Date Posted: Jun 15 2008 at 8:25am
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Hi Paminfl,
Im'm sorry I have not hered about that dendritic.info.
What about you Miss Pammie (trip2)!!!!!!!
Boy, does this sound interesting.And most of all it sounds like the places that I have read about that do the testing on the tumors to determine what type of chemo you will receive.
What makes this sound like it would work is that they are consistienly saying that every one is different and no 2 people should receive the exact same as the other.To use something that is from your own body does sound very very promishing.
So Pam in fla. Please keep us posted on how this moves along.And I hope that you can find more information on it,as all these wonderful ladies say,be ready to ask questions.Lots of HuGGGGGGGs Billie Posting for my sister Betty
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Posted By: djinfl
Date Posted: Jun 15 2008 at 8:46am
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Hi Pam I went to Moffitt also for my Mastectomy and reconstruction. I was stage 1 grade 3 and had 4 doses of A/C. So please keep us informed on your progress. I'm up near Ocala deb |