First chemo regimen has now failed
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Topic: First chemo regimen has now failed
Posted By: zenrookie
Subject: First chemo regimen has now failed
Date Posted: Oct 04 2008 at 2:18pm
The doctor told Susie and I that due to the last CT Scan which showed
the cancer in the lymph nodes was showing a re-growing, entering some
of the places that just months before the Avastin/Carboplatin/Gemzar
had beaten back. The doctor said this indicated the cancer was
now resistant to the chemo regimen and now it was time to move Susie to
another one.The doctor is overseeing a clinical trial which involves RAD001 (phase I trial) just searching for a therapeutic dose. THey combine the Rad with Cisplatin/Taxol. We were told Susie could expect potential permanent nerve damage (neuropathy), hair loss, and a few other side effects that could badly affect the kidneys, and her hearing. The doctor was sort of eager to sign Susie up to her study. But we still had to wait for the last chemo to clear before any medicine could be given, so we had at least a week. Then the doctor basically said the choice is up to us. This really bothered me. First, Susie right now feels good! No complaint of pain or discomfort anywhere! THe holidays also have most of our birthdays and my wife just lives for this time of year. Also our youngest daughter, Abbey, is severely Autistic. It just seemed we at least needed the week to be given the chance to think of all these things. If the meds cause Susie to feel miserable during the holidays this year, when the doctors seem to indicate Triple Negative doesn't have a drug regimen that has ever healed anyone. I also expressed the fear and lack of knowledge involving alternatives. The doctor really did not get into other alternatives other than her study. Once we rose all the reasons we were afraid of the Taxol/cisplatin, she mentioned Navelbine. But she is originally from South America so there is this very small inability to connect with us as just people. Where we left that office and cried on and off the whole way home. Thoughts of going to MD Anderson in Houston; but which with our child and situation is going to be very difficult. But we will do it. Please any of you who can help me. Help me! Suggestions. It the cisplatin/taxol that savage in that permanent neuropathy could happen to SUsie in a time right before an extremely big part of the year due to our daughter and everything else. It just seems why risk her nerves damage at this particular point. Or are we fools? Should we jump in there and take this, even though we seem to still get the feeling that there is no regimen right now that can take on Triple Negative. We are in a world of confusion. I don't want to talk Susie into the WRONG decision and then she ultimately suffers or gets worse because of me. Any help any of you could be, I just would treasure any information, experience, etc. Thank you, Paul |
Replies:
Posted By: cg---
Date Posted: Oct 04 2008 at 2:39pm
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Paul,
I have to see if I can find it - but I remember reading the really positive results they have had combining the radiation and the platinums/Taxol at the same time. I think it was in a radiology journal. I will look for it.
The side-effects can be managed, the first step is to stop the cancer growth.
http://bcwatchdigest.evidencewatch.com/ - http://bcwatchdigest.evidencewatch.com/
Give it a look Paul....
Read the part about the platinums. The researcher listed at the top of the article can be contacted by e-mail and is most generous with sharing the latest information and the best studies, and researchers.
To make informed decisions - you need information. We will help you.
Gone to find the article.
Connie
|
Posted By: CarynRose
Date Posted: Oct 04 2008 at 4:35pm
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Paul,
I had taxol and carboplatin at the same time (with Avastin and Erbitux too) and I started to have neuropathy in my hands and feet, but I was given Lyrica AS A PREVENTATIVE. It really worked as the numbness subsided and no additional nerve damage was detected.
As to where you want to continue treatment, it is extremely important that you and your doctor have a very good rapport and understanding. If you don't have that with your doctor, you should change, and if going to MD Anderson will help you do that, by all means, head that way.
I will also put in a plug for Cancer Treatment Centers of America -- the closest to you would be Tulsa. They are extremely aggressive, while also very committed good quality of life. So far, what they have done with me has workded, thank G-d and I pray that that continues.
Take the week to decide what you want to do, but I wouldn't wait too long after that if you want to impact the cancer that is growing again.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: CalGal
Date Posted: Oct 04 2008 at 9:00pm
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Paul - Where to start? - Definitely take the week you need to think NOT ONLY about your onc's clinical trial, but other options and whether you want to get a 2nd opinion. - 2nd opinions have worked very well for me. They got my former HMO to do a liver biopsy they reneged on (both outside major cancer centers said it was mandatory). My HMO onc recommended 4 AC, then 4 Taxol and then a scan. As a trip neg, I did not feel this was in my best interest - and this was back in Jan 2006! Based on my research, I did 4 dose dense AC and then pushed for a scan. Then I did two more dose dense AC. Instead of 4 Taxol, I did 5 Taxotere & Carboplatin. In between those chemo combos, my HMO dismissed my request for RFA of my liver met – and I got an outside consultation that deemed me a candidate and my HMO relented! (That got me 20 months free of liver mets!) I tell my story, since if you’re inclined, I think you have to be your own advocate and researcher! IMO, MDA is one of the top cancer centers … and if you can, a 2nd opinion from them would be very informative! (Even with MDA, I’d check their onc’s and see if one specializes in trip neg or otherwise looks better for Susie’s situation, rather than just taking the “luck of the assignment”). I’ve heard that you need to tell them that you’re looking for another cancer center rather than a 2nd opinion since they’re not so keen on that. - Did you get a copy of the CT scan AND the report that goes with it? (If you get both, you'll be ready for a 2nd opinion if you decide to; I also like them for my records). At this point, I get the report (e-mailed to me) before I meet with my onc, so that I can go over it ahead of time (have a cry fest w/my DH if needed) and get my questions together for my onc so that I make the best use of my appt. - I gotta say, I'm a bit leery of your onc, since it sounds like she's pushing for Susie to go into her trial. Who is that in the best interest of?! At the time I chose my onc, it was due to him being the lead on a clinicsl trial that looked promising for trip neg (open to er/pr + too). I was NED! Upon mets returning, I new about a different clinical trial ... and he said he'd love for me to be on his trial, but he thought the other one (BRCA pos only) was in my best interest! I liked and respected him before that, but his honesty and recommending what was in my best interest rather than his really made me a huge fan! - I'm shocked at the SE possibilities ... but this must be for the RAD with the Cisplatin and Taxol. I had a similar regiment (Taxotere & Carbo), and am currently on Abraxane, Avastin, Gemzar & Zometa ... I've been telling others of the frozen caps, gloves and booties. Yes, they take a lot of work (well, for my DH, and they aren't fun for me), but I still have my hair (although thinning) despite being on the above 4 drugs, 2 of which cause hair loss & 1 causes hair thinning. The gloves and booties have prevented neuropothy and nail lifting! (I used those back in Aug - Nov 2006 and again since May 2008!) The website is www.elastogel.com The last time I checked, it was pretty lame, but the products have worked for me. Best to you & Susie, CalGal ------------- BRCA1 9/04 Bi-lat lump, clear SNB 38x Rad'tn 12/05 Recurr bc & mets to liver 06 the year of chemo NED for 13 mos until 7/07 Lung met. PARP trial until ... 2/08 Liver mets again |
Posted By: zenrookie
Date Posted: Oct 04 2008 at 11:36pm
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Connie, Just wanted to add, that since this is in the whole lymphatic system, radiation is not an option. I didn't know if this would affect the overall success/failure of the combo with the drugs. We are willing to take on anything. Just with our disabled daughter as well as our older daughter, we are about to enter a season that Susie just absolutely derives so much of her internal spirit and happiness from. THanksgiving, birthdays, Christmas. I just hate to see her unable to get out of bed; having neuropathy pain in addition to everything else. I mean, we are even willing to take the more severe chemo after this special little season. We also felt 'pressure' to get into this dr.'s study. You could sense the disappointment in the doctor. made me just wonder... are you calling the next therapy because of your needs (she only has six women in her study to date and needs more) ; or are you able to look from my wife's eyes and all that we need. If this cancer god forbid worsens, this Christmas could be just so much more special. Susie's spirits will nosedive as well as when she is in terrible pain, possible ototoxicity (family hx of deafness..hardening of eardrum early), I just want her to enjoy some of these moments of life and then when the season is over, we agree to take on the meanest of chemotherapies. Do all cancer doctors just leave it up to the patient to pick the chemo regimen? It seems wrong. Of course, since we started they have said in sweetened words that Trip Neg with mets cannot be cured, only held at bay. I read a journal where regardless of chemos and which one went first, that overall survival seemed to stay the same. WIth all this on our plate, I think SUsie's enjoyment of life, at least during this special time until after the new year may be just as important. Of course, we're scared, and you can keep filling in the blanks. I am grateful to you for helping me. I hope you know. Sincerely, Paul |
Posted By: zenrookie
Date Posted: Oct 04 2008 at 11:46pm
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From Paul, I just want to thank all of you that replied to me. Humbled and grateful are just the only words I have; we don't have much else at the moment, but also humble and grateful are two of the most sincere words a person can give another. I would trade with her just to make this easy. Then, i could suffer and not the girls as their mom goes through such times. But I know the real world and don't go into that thinking often. Any words, advice, past experience... they all help. God Bless All of You.. PAUL |
Posted By: Beth Anne
Date Posted: Oct 05 2008 at 8:21am
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Dearest Paul, Your Susie is so blessed to have you for a husband! I don't have experience with the different kinds of chemo they want to do, but I did fell as if I should encourage you to go to a larger cancer center and get another opinion before embarking on a phase one clinical trial. I feel that Susie should have more treatment options then have been given to you. I so feel you with the challenges you face with daughter, I only wish I was closer to be able to help you  Take care and God Bless, 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: zenrookie
Date Posted: Oct 05 2008 at 6:25pm
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Dear Beth Anne, Your words washed upon me as calming and soothing wisdom and sincerity. I am now thinking maybe we should hit it with the hardest chemo, despite the possible side effects; to try and beat this cancer into oblivion. Thank you so much, Paul |
Posted By: Beth Anne
Date Posted: Oct 05 2008 at 7:36pm
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Dear Paul, Make sure that Susie has all options before making such a difficult decision! Hugs to both of you, 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: zenrookie
Date Posted: Oct 05 2008 at 11:11pm
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Thanks! I am. I hate to say this when it probably is NOT true, but I felt that this doctor's study was more important than Susie's individual best plan. With that said, the doctor said that cisplatin and taxol are probably the two heaviest hitters against triple negative spread to the lymphatic system. Right now, it has penetrated no organs at this time. I would hate to make a mistake because of bad 'intuition', and the next CT show that the aggressive cancer cells have entered a major organ! Our day is Thursday and I'm runnin out of time. Have got to get to a medical library where I can use my rusty but still clinical trained research skills to find within the leading breast cancer journals what the leading treatments are and what their overall results are. That will help me a great deal I think in making a decision and then talking with susie all about it. I'm hoping I will get access to the medical library and a copy machine so I can copy the topmost articles on the subject from the most recent Breast Cancer journals that deal with metastasis. Thank you, paul |
Posted By: CarynRose
Date Posted: Oct 06 2008 at 2:44am
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Zen,
I encourage you to go to a site called "No Surrender". A researcher there named Constantine Kaniklidis can give you the information you are looking for. Just go to: http://www.nosurrenderbreastcancerhelp.com/ - http://www.nosurrenderbreastcancerhelp.com/
And, BTW, while you don't have all the time in the world, you don't have to start anything on Thursday if you don't want to. That is a deadline imposed on you by the doctor who (IMHO) does have a vested interest in having your wife participate in the trial. Before you transform your wife from patient to guinea pig you want to make sure that all other possibilities are covered. My best, Caryn------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: CalGal
Date Posted: Oct 06 2008 at 6:50am
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Zen - IMO, you don't need to go to a medical liibrary, you can find a lot of medical reports on the internet - at least the abstracts, but often the whole articles. If the abstract, you could try contacting the lead medical person. Best to you, CalGal ------------- BRCA1 9/04 Bi-lat lump, clear SNB 38x Rad'tn 12/05 Recurr bc & mets to liver 06 the year of chemo NED for 13 mos until 7/07 Lung met. PARP trial until ... 2/08 Liver mets again |
Posted By: BrendaF
Date Posted: Oct 10 2008 at 3:15pm
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Hi, Paul,
I've been away from the boards for awhile, trying to avoid the subject until scans next month. But I was reading, and thinking I would refer you to Nosurrender's site, when Caryn did that very same thing. I haven't yet checked to see if you have gone there.
Earlier in this thread you were given a link to breastcancerwatch from last year. That researcher was Constantine, who is the researcher on the NoSurrender site, whose screen name is "Edge." He is wonderful, and very free with his knowledge. So go here http://www.nosurrenderbreastcancerhelp.com/ - http://www.nosurrenderbreastcancerhelp.com/
and introduce yourself, and soon Edge will be around to answer your questions and give advice. My screen name there is Analemma and I have a thread asking for advice on alternative supplements, which constantine is very much in favor of, in addition to current mainstream treatments.
By the way, it is the policy of MD Anderson not to take new patients if they are already in treatment. Watson, who is often on breastcancer.org, had an awful time getting in there for her mets treatment, even though she lives in Houston. If you have specific questions about MD Anderson, look her up.
Brenda ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |