ATEMPT Clinical Trial - Roll Call
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I have 2 more treatments left --- next one is this week. Just noticed yesterday that my left big toe is numb and felt some tingling. I assume this is the start of neuropathy. I assume it will get worse with the next 2 treatments.
Any suggestions for me? B6? Glutamine? What has worked for you? Will discuss with oncologist this week.
Thanks in advance,
Reikion
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Reikion - Mixed data on glutamine. TTfan and I stopped using it based on a study showing breast cancer cells used glutamine much like glucose. I supplemented with B6 and B12 and had minimal issues with neuropathy. I think the B12 shots helped - one between infusions, typically week 2. Congrats on coming to the end of this part of your treatment... Maggie
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Thanks Maggie! Will try the B6 and ask about getting a B12 shot.
Reikion
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Hello,
I was happy to see your post (by ccyoung in Feb 2017 about acne/rash symptoms). I have had acne and rash symptoms on my face, neck, and back since my first treatment. (I am in cycle 11 of 17). I have had lots of side effects, but my doctor keeps implying I'm oversensitive and that most of my symptoms aren't related to my treatment. It's really hard for me to assert myself, but I'm confident that this treatment is affecting me way more than what it's "supposed to."
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Sara, I had the same experience with my study nurse - I really got annoyed with her. I think I posted something about it a while back. My MO usually agreed with me that most, although not all, my SE's were either TDM1 or Tamoxifen. Hang in there!
Just had my 6-month follow-up today, and "half" mammogram (had a mastectomy), ALL CLEAR!! Yay! I'm feeling much better these days, fatigue subsiding, neuropathy gone in fingers, numbness lessening in toes, have my appetite back and gaining weight - for all still in treatment, it takes awhile but it does get better!
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Thanks Sara506 for posting!!! The proof will be "in the pudding" so to speak... I'm hopeful the data will show we made an "excellent choice" enrolling in this clinical trial and the SEs are nothing compared to the long term benefits.... Maggie
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Hey MaggieCat! I agree 100 percent. We have had SEs, but they areworth it to help the study of TDM1 vs. traditional treatment. I am comforted that TDM1 is a heavy duty drug for Stage IV and may soon be available for all women.
Thank you for starting this forum--the women here have offered so much love and support during this journey! The forum has been a literal life-saver.
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Sara506--sorry to hear about your SEs! I have long suspected that those of us who looked for this discussion group and posted on it did so because we did have SEs that were unexpected--we were looking for support. I would LOVE to know if there are dozens of women out there who, as the researchers expected, had few to no SEs and never sought out a forum like this one.
As MaggieCat says, we'll find out eventually when the study is completed and the results are published. I agree with Ozoner that we've got to keep our eyes on the prize--the confidence that this is a highly effective drug. Also, comparing what two friends of mine with other kinds of BC went through on other regimens--Taxotere and AC--to Taxol or TDM1, I think we are still in a fortunate place. Nevertheless, having SEs of any kind is no picnic.
Sara, good luck as you continue--as SerenitySis says, better days are coming!
SerenitySis--woohoo about your mammo! One "benefit" of our having "half" mammograms is that it takes a lot less time. ;-)
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Half the pain/discomfort too!!
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Wishing everyone a Happy Easter!🐰
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I saw my MO this past week. Between that and my recent mammogram everything is looking pretty good. My bilirubin is up again, but he said that it is not uncommon for it to go up and down. I have an echocardiogram coming up and that will be my last unless I show cardiac symptoms. My last infusion will be sometime in August, but I don't know the exact date yet. For those who have finished their year of treatment, did your MO run any special tests other than a echo or blood work?
I still worry that 7 doses of TDM1 might be insufficient, but I suppose that is normal and in the back of our minds we all have worries related to our treatment efficacy. I don't miss the lethargy that I had while on TDM1. I feel so much better since coming off. Lethargy, eleveated bilirubin, and bleeding gums were my biggest side effects while on it. Unfortunately, I have some issues related to radiation treatment. I have mild breast lymphedema, the developement of fibrous tissue, and my pectoral muscle is tight as a drum and painful to stretch. I am seeing a great Occupational Therapist and things are starting to improve a little. And if that isn't enough, the week before we went on spring break I developed a mild case of shingles inspite of having had the vaccination a few years ago. This year has certainly shown me how strong of a woman I am. But enough of character building.
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MIPat-- Shingles are awful. I had them in my 20s! You really are resilient, but I agree with you--enough already! I don't believe you will need any other special tests. I had extra testing because of my low platelet count (which even after going off the TDM1 after 7 months did not climb back up by the end of the Herceptin treatment year), but that was just me. And yes, ideally I wish I could have finished out the full year of TDM1, but my MO was very convincing that I'd had plenty of the drug, especially given that she felt treatment of such small tumor was optional to begin with.
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Thank you Isabel. I do wonder what percentage of the trial sailed through with no side effects to speak of. I do know that they were seeing similar issues with the other participant at my facility.
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Chiming in... I also wonder about SEs for the trial. My "insight" into participants at my location from 2014 to early 2016 - multiple drop-outs due to neuropathy or liver function issues. I think I was the first or second to complete all 17 treatments at that location. There are many ways to parse "us, meaning our data". Concurrent chemo and rads, something atypical in the treatment of breast conservation patients...I've noticed lots of drop-outs for issues that began around treatment #4, which would be the overlap period...
MIPat - I have breast lymphedema also. Went to therapist a couple of times.. not really bad enough for manipulation to be worth the time and expense. Tight sports bras have been my answer along with avoiding certain positions in yoga and pilates classes. For those of you with implants, wonder if you avoid putting pressure on the boobs also....
Have a wonderful day ladies...
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It's worth keeping in mind that the chemo element of TDM1 is Emtansine, a drug that was discontinued in the 1980s because patients couldn't tolerate it--too much toxicity. Yet it was considered extremely effective against cancer cells--that's why the researchers selected it to "ride" the Herceptin in TDM1. Because of the way TDM1 delivers the Emtansine (not to all rapidly dividing cells but only to cancer cells, if they exist), it was thought that there would be no SEs or minimal ones. But my third-opinion MO, a famous breast cancer guy at Sloan Kettering, indicated to me that he suspected this would not be the case (while agreeing that it was an excellent option for me). My MO at Dana Farber referred to my SEs as the drug "breaking through"--basically causing milder versions (MUCH milder) of the SEs it was known for when delivered straight.
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Thank you, MIPat for writing this on 4/22:
"I have mild breast lymphedema, the developement of fibrous tissue, and my pectoral muscle is tight as a drum and painful to stretch."
That's exactly what I'm feeling but I didn't have the words to put to it!! My radiation ended on Feb. 3rd, with seemingly no side effects (other than mouth sores - which they swear had nothing to do with radiation.) Now that it's 3 months later, I have a LOT of tightness in my armpit region, and my arm feels swollen when I'm exercising.
I saw my surgeon a couple of weeks ago, but he seemed to think this is all normal. (Because I appear young and healthy, people don't often take me seriously about my side effects.)
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Sara506-- Mouth sores were one of my SEs from the TDM1 (I didn't have radiation). Not pleasant at all, but the doc prescribed a mouthwash that took care of them. They recurred a few times.
TTFan-- I've been thinking of you, as my switch from Tamoxifen to Anastrozole brought back my hot flashes. Not violent ones, but still, I am SO DONE with that. I am now on a two-week break from the anastrozole to "reset" my body. If that doesn't resolve the problem, I'll go back to Tamoxifen. I can't face another summer with hot flashes.
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IsabelArcher - yes those hot flashes are a major pia! I was at a formal event Saturday night and wore strategic black because it doesn't show the wet spots all down my back and chest as badly as lighter colors. Always have something with me to wipe off the forehead drips. I find the hot sweaty part of the hot flashes to be more intense on Tamoxifen, but a little less frequent and without as much of the preceeding nausea and agitation that I had on anastrozole. Of course that could be the Lexapro I'm on helping some too as I started that not too long after the switch from AI to Tamoxifen. I think frequently about going off the hormone meds as we are so lucky to be in a pretty good prognosis group already - they aren't making a huge difference in recurrence rates. Then I think about how mad I'd be at myself if I traded hot flash relief for having to battle this all over again.
Hope yours settle down soon!Sara506 - if you are getting arm swelling with exercise that is likely more than just usual post-op tightness. I would insist on seeing a physical therapist or other lymphedema specialist. As for the pectoral muscle and armpit tightness - two and a half years after surgery I still have to (gently, because yes it hurts) stretch that area at least 3 or 4 times a week to keep it mostly at bay. It's actually become a good barometer for me. I feel that tightness and realize I haven't been to the gym in a few days and it's time! If I really slack off for awhile, my shoulder gets very painful too, so my body is excellent at reminding me!
Despite all these lingering annoyances, I just got back from a several hundred mile bike trip through the tulip fields of northern Holland, biking up to 40 miles a day. Not bad at 60 eh? It felt like a real symbol of recovery. And while incredibly beautiful, it was coooold!! In the forties and raining/hailing. My hot flashes were very helpful in that context!
Love to all!
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Hi Sara506, IsabelArcher, and TTFan,
Sara, I had a scrip for a lymphedema sleeve, and I ordered later ones at lymphedemaproducts.com. I wasn't swelling but my surgeon wanted me to wear a sleeve while flying or while doing repetitive motions like raking leaves. I took my scrip and ordered sleeves w a slightly lighter compression for dancing in Zumba. Juzo has soft fabrics and crazy designs. People have asked if they were tattoos, and when I fling my arms around I no longer worry much. And I agree-- some doctors don't take the SEs seriously. I guess compared to other patients these don't seem too bad, but my SEs were important to ME.
Isabel/Archer: I genuinely felt like the AIs were killing me: frailty, instability, neuropathy, and probably bone loss, and am glad that I've started on the Tamoxifen. Luckily, I have had few hot flashes. After a year on Exemestane and a half year on Femara,I feel that I turned old all of a sudden. Now in the process of reversing that trend.
And TTFAN, so fantastic that you biked through Holland!!! An adventure of a lifetime. What an intrepid survivor!
For all of us:
"Be glad. Be good. Be brave."--Eleanor H. Portman
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TTFan and Ozoner--amazing how each individual responds differently to the drugs. Also my hot flashes are different from yours, TT: I've never sweated! I've had 5-alarm hot flashes where I think I'll go mad from internal heat, but never a drop of sweat. Ozoner, I'm so glad you got off drugs that obviously are not right for you! Kudos to you, TT, on your bike trip. You sure weren't tiptoeing through the tulips (I'm dating myself--but since you're 60 I know you'll get the reference ;-)
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Sara - We have to be our own advocates. Ask for a referral and be persistent about it. While instances of lymphedema involving the arm have decreased with the increase in lumpectomies, they are seeing more breast lymphedema which they are relating to lymphnode removal. The Radiology PA gave me the referral for lymphedema evaluation. I found the therapy very helpful. My pectoral muscle is still a bit tight. I still stretch it at least once or twice a day. I find that the best stretch is using a foam roller under my shoulder blades. I also lightly massage it when it starts to feel tight. I still have to massage my breast to promote lymphatic drainage, but not often. I have the tightness leading up to the armpit and in the scar tissue from the sentinal lumph node removal, so I massage those areas too. While I don't have any swelling in the arm, I was given a compression sleeve and glove to wear when flying. I was also given the name of a massage therapist who specializes in lymphatic drainage. My new norm.
Maggie - My therapist wants me to wear the sports bras at night too. In the beginning I wore them every night, but every once in a while I give the girls some freedom. I also was given a contoured pad that I was to wear at night, but am weaning down to once in a while. I haven't noticed any correlation between activity and swellling, but if I drink too much pop (sodas for you non-Michiganders) it has always flared up my cystic breast problems.
TTFAN - Wow! I'm impressed. Congratulations on a fantastic trip. I am just now getting into back into biking. During treatment I held back on what I was using to keep my knee arthritis under control. I hate to think that it is time for a replacement. I just want to have a stretch of time feeling good without being poked and prodded.
Isabel/Archer - definitely had the mouth sores while on TDM1. They may have felt that there wouldn't be the side effects with TDM1, but I had several that were not too serious and then the liver issues which took me off of the drug. I don't know why they wouldn't think that pumping any drug into a persons body wouldn't cause some type of SEs.
Ozoner - Hope that you are feeling better. Some of the sleeves are gorgeous. Keep flinging the arms with abandon
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MIPat-- I understand why TDM1 wasn't expected to have SEs, as it's a targeted therapy rather than chemotherapy. There is the "chemo piece" of the drug, but it targets only cancer cells (if there are any) and not other cells. Nevertheless, the chemo piece certainly does affect the rest of the body, as all of us discovered. When I got my third opinion at Sloan Kettering, the onc there (a big name in BC) told me he thought either Taxol/Herceptin or the trial were excellent options, but he did predict that TDM1 would cause more SEs than my onc at Dana Farber had predicted. So there was some variation in the thinking on this. I know every woman has her own feelings about hair loss, but I think the fact that TDM1 doesn't cause hair loss is more than just an aesthetic or frivolous issue--you do what you gotta do (if we have to have regular chemo some day and lose our hair, we'll deal with it), but I was happy not to have that particular SE. It will be fascinating to learn the results of the trial in a few years--I'm eager to know how many women had to go off the drug early as you and I and others did.
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A year ago today I received the phone call with my diagnosis. I has been a difficult year+ and I won't finish treatment until the end of July. I've learned a lot about myself, and have grown stronger in my faith, so some good has come out of it. I certainly am even a stronger person than I thought I was. While the cancer isn't always on my mind, I still have fears about the future. I feel like I am waiting for the other shoe to drop whether it is in five years or twenty five years. I guess that will always be there. I want to thank you all. Even though we have never met, you are an amazing group of women and have been a tremendous support. So now I have to look hard at what life changes I need to make to be the strongest and healthiest I can be. I am trying to decrease the amount of chemicals coming into my body so there goes the painted toenails and alas, I am going to let myself go gray. At least I'll be saving money.
Isabel/Archer - I too was happy to not have to deal with hair loss, though I was more freaked out about loosing eyelashes and eyebrows. The benefit is that it doesn't hijack a conversation. I can just say that I haven't felt well or had some helath issues and my hairdo doesn't make have to explain more. To tell the truth, I wasn't that concerned about the hair. I was extremly fearful of neuropathies and the drop in white counts that came with chemo. The biggest problems I had with TDM-1 were lethargy (up to 10 days after infusion) bleeding - gums, slight nose bleeds, and it wrecked havoc on my GI system. Now that I am off, things are much better.
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MIPat--I got my diagnosis 4 years ago last month. It was not until I was well past the treatment year that I stopped waking up every day (or in the middle of the night) with "Oh crap I have cancer" being the first thing to go through my mind. This definitely gets better. I am a much more positive, glass-half-full person now, and though I would much rather never have had cancer, now that I have, I try to use it toward embracing every day's opportunities, to take a badass attitude toward stupid cancer at all times. That said, I also am stuck with wondering when the other shoe (or in my case the other boob) will drop--I'm sure we all are. How could we not? My mammogram is next month--the annual total freakout is on its way!
I wish TDM1 had been the breeze that the researchers expected (in terms of SEs). Maybe it was for the hundreds of women who never got onto this website! We will find out in a few years.
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I love the way you call it "stupid cancer"!
Now people have forgotten my cancer journey. The other night, a friend was telling me about visiting a man who was a radiation specialist, who was called to help when Chernobyl happened, was a celebrated expert in his field. I was doing great until she leaned forward and said: he told me NEVER to get dental X-rays!!!!!
It was getting dark, but then she stared as I blinked. "What?"
And I answered, " it's just that you have no idea how much radiation I've had the last two years, and in fact I returned to the dentist this week after a 26-month hiatus."
And I want to file it under stupid cancer, and I don't want people to be careful around me. I'm glad they've forgotten and I guess maybe it's okay to be anonymous...
..except when I meet others going through treatment, like this discussion board,and we are able to share our strengths and support.
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Ozoner, I find that well-intentioned people say stupid things about just about everything. I once met a pregnant woman (long ago) who proudly declared she was having natural childbirth and that no way were the doctors going to "cut my baby out of me." I had just had a C-section! I agree with you that it's a good thing your friend doesn't think of you as having had cancer--you're just you. But you do wish people could be a little sensitive. Filter your thoughts please before saying them out loud!
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Check out stupidcancer.org. Directed at"young adults," but something for all of us on there!
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OMG, Serenitysis--I can't believe stupidcancer.org exists!
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Wondering if anyone on arimidex has had liver enzyme elevations? Mine were elevated slightly on Tdm1 and never really went back to where they were (very low normal) Now still mildly elevated so my gastro ordered more blood work and an abd US
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TTFan and Ozoner (and anyone else who might have this issue): I was wondering how long you were on the AI drug (Arimidex/anastrozole) and how long it took for your SEs to subside after you stopped taking it. I thought I was fine at first on anastrozole, but the hot flashes got bad, so I switched back to Tamoxifen. I was on anastrozole I think only for a month or two, but I now have joint pain all over the place. I can't tell if it's soreness from a difficult painting job I did on my house, or a leftover from the drug, or both, or neither! It's quite unusual for me to be sore for this long after hard work like scraping/painting. I have aches in places I never ever had them before, like my elbows. This soreness and stiffness is worst in the morning, but later in the day when I stand up from sitting I hobble for a little while before the stiffness goes away. I hope it is the drug causing this and will resolve on its own--it has occurred to me that I could also have arthritis. Your thoughts?
Wabals--I doubt I was on the drug long enough to affect liver enzymes, but all I know is I had a physical recently with my primary care provider and all my bloodwork was normal. I hope things clear up for you.
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