ATEMPT Clinical Trial - Roll Call
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Maggie, when I asked my MO if the trial is now "closed," her reply was "yes, we've reached accrual." I think this is another way of saying they have the number of subjects they need so now it's closed? When I looked on clinicaltrials.gov, though, it said "open" as of a few days ago.
Ozoner and TTFan-- do you have your ER+ number--the percentage? If I remember right, my tumor was only 10-20%, so weakly positive. My test result did show that I'm totally post-menopausal, so I'll be trying an AI soon. Ozoner, has your doc mentioned the possibility of ditching the AIs and taking Tamoxifen?
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Hi Isabel/Archer and TTFan!
I don't know my ER number. I think they wanted to find an AI for me, but yes, Tamoxifen is on the board if needed. After I strained my knee, I didn't think so much about my feet. Now I'm weaning myself off the Naproxin, but my gait is off some from favoring my left knee.
My MO did tell me they have a test to see how many years I should be on a hormone blocker. I can't believe it's been two years since diagnosis!
So my goal is to adjust to the Cymbalta and Femara,walk more, and then hopefully get back to Zumba and dancing. It's hard, though, not to get mopey about these challenges that are, after all, a part of life.
(I hope ATEMPT makes Kadcyla available to all women. It seems so much more humane)!
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Very enlightening reading the recent posts... I have reached out for an official confirmation of closure. And just now I am reading several of you have suffered depression and been prescribed "stuff". I have struggled with either depression or "chemo-brain" for close to a year. Tried to control through diet and exercise... Then tried two different drugs. The last, generic prozac, was a bust...took my liver enzyme levels back to the highest I had during T-DM1 treatment.. Not going back there...
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Hi everyone,
A friend of mine was recently diagnosed with Stage 1b, HER2+ cancer. It sounds like there is some lymph node involvement so her Onc told her she was not eligible for this trial. Anyone on here have lymph node involvement??
By the way, hi everyone! Sorry I've been dormant, but I finished up treatment in July and have felt great since then. For those going through treatment, hang in there! I really hardly think about it these days. Hugs to everyone.
Laura
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Hi Laura61-- None of us would have been eligible for the trial if we had lymph node involvement, but in any case the trial has reached its target enrollment number. So it seems to be closed, but Maggie is trying to ascertain this for sure. I would imagine your friend's onc will recommend Taxol and Herceptin? I'm confused that she could be stage 1b with lymph node involvement, as I thought that meant stage 2, but I could easily be wrong. I wish her the best. And I'm so glad to hear that you're feeling great!
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Thanks Isabel. It's so interesting how different patients receive news about and understand their diagnoses and treatment options! Different medical centers = different messages. Different patients = different ears! I know it will be a while, but anxious to hear the results of this study.
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Just looked around this website and read that Stage 1B can include presence of cancer in the lymph nodes <2mm. Learn something every day.
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A big sigh of relief here. I had my hysteroscopy and D&C today and I had three polyps removed. At least one was 1 cm in size. My doctor had said preoperatively that a polyp could fill space making it appear that there was endometrial hyperplasia. Of course we need to wait for the pathology report though one was nicked during the biopsy and came back benign. The plan is to monitor to see if there are continued problems with polyps and bleeding. If so, being postmenopausal, a hysterectomy might need to be considered.
So, a big thank you to everyone's words of support. This is a great group to be in.
Isabel/TTFan - It does worry me a bit that I only received 7 doses of Kadcyla before being taken off the drug. My MO felt that with the entire treatment plan that it probably wouldn't have a significant impact on the percentage of risk for recurrence. Still the uneasiness about not getting a full course exists. However ambivilant I am about the change, I see it as for the best. I basically lost a third of my time due to lethargy and I think that there was a greater impact on one of my children than I had thought and now a working to make things better. While the Herceptin did give me some nausea, I feel so much better and energetic off of the Kadcyla.
Maggie - My last office visit, they offered to put me on something for depression because all I could do was cry. There was so much on my plate - coming off Kadcyla, looking at the gyn surgery. I did talk with a social worker briefly, but I was much better using relaxation techniques and prayer and reading a lot of books on teens. The University of Michigan had hoped to enroll 20 participants into the trial, but only had two by the time it closed. I had to leave the trial and was told that the other participant was having similar liver issues like I did.
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MIPat, so glad the procedures are done. Let us know how things work out. You've had a lot to cope with and deserve a break!
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Received confirmation on the trial. It is officially closed. Worth noting, it closed prior to the study plan projection (mid- 2017).
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Hi I am new to this discussion. I have been receiving T-DM1 since 4/15/16 and only have two treatments left. (YAY). I developed a acne form rash after my 12th cycle, over my back, hips, chest, and abdominal area. It cleared with triamcinolone cream. I was wondering if any one else experienced this SE?
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ccyoung... thanks for sharing that you are part of this journey! I follow a stage 4 tdm-1 thread and have read acne is a known se. My experience - I developed a "rash" on my shoulders during treatment and lasting for a number of months post treatment. Congrats ... just a few weeks to go. PLEASE post when you finish!!! Maggie
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ccyoung - Welcome to the group and congratulations on almost being finished.
Isabel - biopsy came back negative, so that is a big load off my mind. Hopefully the future remains uneventful.
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Thanks for the information Maggie. When my research team reached out to the study coordinators they said they hadn't seen this SE. I am a nurse and surmised this was a SE. I wish the coordinators were more informed of the SE. My acne has not been as wide spread as the 12-13th cycle but I still get some acne about a week after my treatment
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I have Rosacea and after my TDM-1 treatments I would have a significant breakout of red bumps on my face. I reported it, but they had not think that it was a side effect related to the drug.I attributed it to the stress of my treatment triggering a Rosacea breakout. My skin is better since being taken off TDM-1.
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MIPat--hooray! I'm so glad. All we want is for our lives to be boring and normal, right?
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ccyoung - I was told by the study team that a few other patients were experiencing a rash all over their upper body.
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Today I had my first mammogram since my diagnosis last year. I started to panic when they had to take two additional views of the non-surgical breast, but everything was clear and I am good for another year.
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MIPat--I have been through that--it's really awful. I never feel sorry for myself except when I'm in in the mammo waiting area and mammo room!
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MIPat - Wonderful news!
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Hi friends,
Have any of you experienced CIPN? (Chemo induced peripheral neuropathy?). I related mine to the AIs, but I've been off four weeks and still have pain and numbness from the knees down. Also, had an X-ray for an injured knee, which indicated small amount of arthritis and some fluid on the knee.
I see my MO next week to determine the next step since I've had so much trouble w the Exemestane and Letrozol. Anyone else gimping and tired like me
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Hi Ozoner,
I have neuropathy in my toes, numbness but no pain. It started after my treatment ended in October. My oncologist attributes it to the TDM1. She says it usually (but not always) goes away eventually but so far this has remained constant. During treatment I had it in my fingers (tingling), but that has gone away.
Even tho I'm post-menopausal, I'm on tamoxifen because I have osteopenia and AIs can contribute tobone loss. I've talked to a lot of women with difficult SE's on AIs. I've had only minor ones with tamoxifen.
I hope you find relief!
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Ozoner, I'm sorry to hear you're still having trouble with pain from the knees down. But it seems good that you went off the AI for a while--would you consider this proof that it wasn't the problem? I hope you can get to the bottom of this and get some relief.
I have switched from Tamoxifen to Anastrozole (one of the AIs)--this is about my third week. I am apparently very fortunate because I don't notice any difference--no SEs other than a couple of hot flashes the week that i switched, but that has gone away. One of the things my onc and I discussed was that Tamoxifen, which I took for 3 yrs, has the extra risk of uterine cancer, and the AIs have the extra risk of bone loss. I don't have bone density problems so at least for now it seems safe to take the AI.
SerenitySis (and anyone else this applies to)--on a very different subject, I see that you had a mastectomy with reconstruction on one side. Same as me. Until recently I had no problem with wearing my normal bras. But since I gained my post-treatment weight (15 pounds), I think Organic Boob is now a bit bigger than Frankenboob, so my 34D bra slips down on the organic side while staying put on the Franken side. I am unhappy about the unevenness but have been reluctant all along to get Organic Boob surgically lifted. I must have tried on 50 bras at Macy's the other day. If you have any thoughts on this let me know!
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Hi IsabelArcher, I have the opposite problem. I also lost 15-20 lbs during treatment and have only gained back 5 so far (it's only been 5 months). My reconstructed breast is bigger now than my real one. My plastic surgeon said he could put in a smaller implant, but I don't want another surgery plus I hope to gain another 10 lbs. now that I'm eating normally - nutritionist has me on a high protein/high calorie diet. How long did it take you to gain back the weight??
So I don't know if a larger implant is possible; seems more difficult maybe than a smaller one. I recommend a bra specialty store rather than a department store, preferably one that deals with women who've had breast cancer. In my area, Boston, there's a chain called Lady Grace. There is always someone there with special training, both for women who've had reconstruction and those who have not.
Good luck! I'm just happy my implant finally feels more comfortable. I'm not aware of it constantly like I was before.
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Serenity, thanks for the rec to Lady Grace. I go to Boston regularly so that may be a good option. In terms of my weight gain, my situation is that, in the months before my cancer diagnosis I had been on a low-carb diet and had happily lost 10-12 pounds, which was my goal. While on TDM1 I lost another 3 or 4. Then after I finished treatment, all the weight slowly crept back on, for a total of 15 lb weight gain. But I wasn't eating more or eating differently, and I always exercise. It was like an alien took over my body. I thought it was the Tamoxifen but my onc swore it wasn't--just menopause. I've read that women often gain weight after chemo, and it's not well understood why this happens. Anyway, I share your reluctance to have more surgery, in my case to get the real boob lifted, in your case to get the implant size adjusted. I think you're right not to get a larger implant--you probably will regain the weight (and since that's what you want, I hope you do!). My implant has been completely comfortable for a long time now, and I hope you continue to not notice yours. I'm confident that no one who isn't studying my boobs (!) would be able to tell they're uneven now, but I'm always hitching up one side of my bra and it's annoying. I'm thankful to be able to wear anything I want, including deep scoop necks and bathing suits, but the suits have to have underwire.
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Hi all. I got CIPN from Taxol. It peaked around the end of treatment and has very slowly improved in the two years since then. At it's worst I couldn't feel my toes or fingertips, and had tingling in the soles of my feet. It never came up to my knees. Now I rarely notice the toes and the fingertips I've gotten used to enough that it isn't the constant bother it used to be. It hurts in the cold though so I wear gloves even in our warming california spring. I'm so sorry you are dealing with this - everyone hoped TDM-1 wouldn't have those effects. I'm not aware of AIs causing neuropathy - joint pain for sure, but not numbness and tingling.
On the hormone therapy front - I failed AIs miserably. Horrible joint pain and severe depression. So after struggling with it for over a year I switched to Tamoxifen. The joint pain went away entirely, but after a a brief relief while off all meds the depression crept back in with the Tamoxifen as well. My brain apparently does not like estrogen deprivation. So now I'm on Lexapro for the depression and it has, at least so far, continued to work very well for me so I am still able to take the Tamoxifen. The hot flashes are no fun, but I'm learning to live with them.
On a non medical note, I'm excited to tell you all that I finally overcame my fear and got certified to Scuba dive! I did it in Maui, and while one of the harder things I've done in a long time (due to my fears not that it's really hard) I worked through it and LOVED being weightless and joining into the peaceful underwater world. I have a dive trip planned late May to Bonaire and can hardly wait!
Wishing you all continued health and recovery!
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TTFan-- Wow, you go scuba girl! I'm impressed. And about Tamoxifen hot flashes--I hope you'll be like me and they'll just go away. I'm still on the warm side--warmer than anyone in any room and cannot wear any sweaters other than cardigans that can be ripped off, but no actual hot flashes.
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I completed my course TDM1 on 3/17/17!!! I experienced some intermittent numbness and tingling of my right hand toward the end of my treatment. It was not bothersome so I know I am lucky. My biggest side effect was joint and muscle pain in my lower extremities along with terrible back acne, which I have never had, and a full body itchy rash after cycle 12. I took a course of predisone after my last cycle and the rash is A LOT better.
I had a double mastectomy with reconstruction in March last year. Yes, I have been living with tissue expanders for over a year now and I can't wait to get them out !! I also had to have radiation so since I had to wait for my skin to recover and I was still receiving TDM1 we decided to wait until after my treatment to get my implants .My surgery is scheduled 4/28/17 and hopefully since it is both breasts I won't have the same issues with the unevenness.
On a different note I have now have to make the decision about starting Tamoxifen. My ER was only weakly positive so my oncologist suggested I start Tamoxifen and if the side effects are too bothersome then she would feel comfortable with me stopping it. I was wondering if anyone would share thier experience with being weakly ER positive. What did your oncologist sggest?
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Ccyoung-- Congrats on finishing the treatment! Hooray! I can't believe your patience in living with expanders this long. You deserve a medal! There is some adjustment to the implants but they are soft--nothing like the coconut shells of the expanders. My adjustment was quick.
You asked about Tamoxifen: yes, I am only weakly positive, and my onc recommended Tamoxifen, which I took for 3 years. I recently switched to an AI, Anastrozole (because I'm post-menopausal, 55 yrs old now). My only Tamoxifen SEs were hot flashes--intense and frequent--but it's possible I would have had them anyway because of menopause. (I had my first hot flash at age 47, 4 years before my BC diagnosis, and they came and went over about 7 years.) Once the hot flashes calmed down it was like I was taking nothing. One thing to keep in mind: I had a brief SE of all-over body tingling when I first went on the Tamoxifen; my onc took me off it for 2 weeks, and when I went back on, no more tingling, ever. She referred to it as a reset, and I know other women who have done the same (2 week break) from both Tamox and AIs to reset the body and get rid of SEs. The thing about Tamox for us weakly ER positive ladies is that the potential benefit is considered to be marginal, as in very small. Good luck with everything!
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Isabel, I had hot flashes when I first started on Tamoxifen, but only for a few weeks. Very interesting what you say about no hot flashes now but just feeling overly warm - I have that toobut never made the Tamoxifen connection. I used to be cold all the time; now I'm more often over-heated. You're probably right about the cause.
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