ATEMPT Clinical Trial - Roll Call
Comments
-
Ozoner, I could not be happier to hear this. I don't know how you got through the scan without imploding from anxiety. Tangoing and all the other exercise you like will be good for the deterioration, yes? Also, will you be taking Tamoxifen (or maybe you already are?). It has the benefit of reducing osteoporosis risk.
0 -
Ozoner.... Yeah!!!!!! Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!
0 -
Ozoner, wonderful news! I'm so happy for you.
0 -
Congratulations, Ozoner!! What a relief!
0 -
Had my 3 month post chemo check-up yesterday. Waiting for the MRI results.... Blood levels looking good/improved over the 12/15 test. Liver enzymes dropping as hoped... still in the upper normal range but lower. Talked with my MO about the research I posted last week. With a twinkling in her eyes, she smiled and said that yes there was this thought that T-DM1 had an immune aspect... just not proven as yet....
0 -
great news Ozoner! So happy it was all nothing but some tango soreness 😉, and congrats on your good checkup Maggie! I'm doing well too. Just finished a 2 month break from the Arimidex that was beating me up emotionally and physically. Just started Aromasin, so we'll see whether that is more tolerable. If not I'll go with Tamoxifen.
Glad to see everyone moving along with life, whether finished or still in treatment. Spring is almost here
0 -
Started on Tamoxifen yesterday!! Anyone post-menopausal taking it who can share any SE's?
0 -
Great news Ozoner!!
0 -
Serenity--I started Tamox about a year and a half ago. I was heading into menopause before dx/treatment and then went into it for good during treatment. Had wicked hot flashes, but I'd already been having them before starting Tamox. Now they've now pretty much subsided. It's possible that the hot flashes were just what my body would have gone through anyway during menopause. (I'm 54 now, btw.) The other thing that happened is that I gained about 12-15 pounds. I blamed the Tamox but my onc swore up and down that it's not the drug, it's menopause. It's extremely depressing to me because I have an excellent diet, exercise, and KNOW what foods to avoid. (I had lost those 12 pounds before dx on a low-carb eating regimen.) So now I have those middle-aged rolls of fat around the middle that I was sure I would never have. Can't lose an ounce. Other than those things, which are prob not Tamox-related anyway, Tamox has been smooth sailing for me--no problems at all. Hope it's the same for you.
0 -
Isabel, I was just talking to two BC survivors who I know through the Dana-Farber SoulMates BC mentoring program, and they both said exactly what you said - that treatment put them into menopause and after they finished treatment they gained 12-15 lbs. and hadn't been able to lose it. They are also both on Tamoxifen and about 3 years post-diagnosis. Their docs ALSO told them the weight gain was due to menopause. The stories are uncannily similar!
0 -
Wow, thank you all for the support! You are wonderful cheerleaders.
Every success is a celebration, and we are here for each other during difficult times. Yes, I did implode a little while waiting for results, like we all do each checkup. MaggieCat, hope you get good news on your MRI.
I'm taking Aromasin and will let you know if my MO changes me to something else. I got a Prolia shot in December. Isn't it weird that almost every med has achy joints and sore muscles as SEs! But so much better than the alternative.
Saw Deadpool today. Warning: in addition to being an incredibly incredibly raunchy, movie, its protagonist gets terminal cancer. That he is mutated into a superhero whose immune system heals him is fantastic, but I squirmed a little when the villain used toxic infusions on his victim.
Next milestone: hopefully finishing w herceptin next month. What a roller coaster year, and glad to have found this discussion board
0 -
Serenity--yeah, my DF nurse practitioner told me that she hears this repeatedly (about Tamox and weight gain). My onc told me it was fine to go off Tamox for 2 wks to see what would happen--she wanted to prove to me that Tamox is not the culprit. So I did. If I'd managed to lose 1 little pound in those 2 wks, I would have felt that I was right, but I didn't lose an ounce despite strict diet.
Ozoner, no danger of my seeing Deadpool, though Hubby would love to. ;-) The last action movie I agreed to see with him was right after my dx. It was supposed to escapist entertainment. I can't even remember which one it was, but in the first scene the future hero's mother dies of cancer. My poor husband was beside himself that he had brought me to see this. I also hate cancer metaphors in the media--like, "ISIS is a cancer that must be stopped before it metastasizes." Please, think of some other way to put it!
0 -
Amen!
What bothered me most was the cancer doctor last year that fraudulently put his patients on chemo to make money. Literally nauseated me.
So chemo references are sort of like when you have a stomach virus and you see 15 commercials for fast foods, with people cramming giant hamburgers into their mouths. You never realize what's in the background until you have a frame of reference. Must be hard for tweens to see all the makeup ads and swim suit issues. They don't realize they are lovely just as they are. They don't need Scandal lipstick (which I have) to be attractive.
0 -
Hi there. Just had #11 on Thursday. This is the second time my infusion has lead to a full blown horrible, terrible cold that has knocked me out for days. I had a slight cold on Thursday morning (very slight, hardly noticeable!) but after the infusion I have been bed-ridden. I feel like kadcyla puts a minor cold on steroids. It happened back in October and I was in bed for 5 days! Has this happened to anyone else?
0 -
Yep Laura.. only once (not twice thank goodness), but was, well... not a fun few days... does pass....
0 -
Yes I was sick for 3 weeks. Did not connect it to kadcyla tho
0 -
Well, I guess it's good to know that I'm not alone. Not sure how to avoid germs entirely with two germ factories running around my house. I guess I need to up the handwashing, though no one else has been sick in my house. This too shall pass...
0 -
Read another clinical trial review discussing the immuno aspect of herceptin... findings very much like the Basel T-DM1 findings I posted a week or so back.... Feeling very positive!!!!
For me, the MRI results are in for the 3 month post chemo/baseline scan...
ASSESSMENT: BI-RADS CATEGORY 2: BENIGN.-- Expected postsurgical and radiation treatment changes, left breast.
Glad it worked out this way!
0 -
Fantastic, Maggie! And thanks for sharing updates on the ongoing research into HER2+ drugs.
0 -
Excellent Maggie! Heading back to Fl after #10, 7 to go!!!
0 -
Hi everyone, it's been quiet on this site for awhile!! I recall posts about fingernails growing in with ridges, but has anyone had their fingernails break easily and split? My nails have always been super strong and fast-growing, but in the last week about half of them have broken offor split. I think it must be a side effect. I have treatment #8 next week (almost to the halfway point)!
0 -
Hi Serenitysis. My nails got so I could barely dig into my purse without breaking or tearing them. I now take a multivitamin, biotin chewies, and omega 3. I also keep my nails short and have started wearing gel nail polish.
Good for you being at round 8! I got to 7 or 8 but then went to herceptin only after losing 30 pounds and getting increasing neuropathy in my feet. So my SEs caused me to switch but the trial will keep up with my health for at least five years, which they do for all the study subjects.
I hope your nails get stronger. Oh, and my Synthroid has been increased this month which really helped my nails and hair. I will get retested next week to get the levels confirmed.
0 -
Nails ... I took biotin supplement (plus other supplements) from Jan to Sept when I backed off supplements due to acid reflux and quesy stomach. Also kept nails short and used gel nail polish. So I'm now a bit past 4 months since last T-DM1 infusion. My fingernails have pretty much gone through a full growth cycle and are back to normal strength with minimal ridging, finally letting them grow out. I have stayed with the gel polish through this period of growing out the weak nails.
Reminded that a year ago this time I was going through rads, living each week 165 miles away from home. Seemed like it was forever, and now, well it was just a blip!
0 -
Thanks Ozoner & Maggie Cat!! Ozoner, what is Synthroid?
So, I will cut my nails, try the gel nail polish, and maybe biotin. It helps to know it's a normal side effect, or at least one that others have experienced!
I have mild neuropathy in my fingers but none in my feet. Doesn't bother me too much.
0 -
I just finished my 14th round of Kadcyla/ Pergeta treatment today. Only side effects I have is dry mouth, neuropathy of the right hand ( may be due to the surgery or radiation nerve damage, but feels like it's gettin worse), bloody noses, runny nose. My platelets are going down after each cycle, now at 105 prior to chemo today. My clinical trial nurse says the won't infuse if I get below 75 on my platelets. Oh I only have 4 more to go and am so much looking forward to being done in June. My hair grew back really curly ( which I had straight hair) so this is very new to me, but at least it's hair.
Good luck to everyone working hard beating this disease. Prayers sent
0 -
Swissm-- You're almost there! Your hair looks beautiful. I've read that hair grows back curly at first but then returns to your original hair later on. So glad you are able to benefit from the Kadcycla/Perjeta regimen without too many SEs. I'm cheering for you as you reach the end of treatment--as we all cheer for each other.
0 -
Hi Serenitysys! Synthroid is thyroid medication, and I've been on the generic version of it for a number of years. My annual blood tests showed that I needed a higher dose, and that happened when I coincidentally started the biotin, Omega 3, and vitamins, so I'm not sure which of these things helped my hair and nails. The biotin chews are tasty. Like MaggieCat, i resorted to the shorter nails and gel polish. Still not perfect, but a lot better.
And MaggieCat, I always felt so fortunate that I live close to my doctors after hearing of your week-long trips for radiation. A definite blessing to be home every day instead of in a motel.
Yes Isabel/Archer: Swissm, people will probably be asking where you got such curly hair. It looks great! Your regimen sounds like a harsh one, but you are so close now.
I don't know what I would have done this past year without the support of the women on this discussion board...sisters who can relate totally and find the silver lining in every cloud. They help me to live in the now and model the kind of person I want to be.
0 -
11 down and 6 to go!
Day after this treatment felt like s---😖
Today feel great
0 -
Wabals, you're on the downward side!! Congratulations on another one down. Sorry you had a tough day!
0 -
Wabels... Congrats!
0
