ATEMPT Clinical Trial - Roll Call
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Hi everyone! Been busy catching up with all the things left undone during my SEs. Happy they are cyclic and fairly predictable. Have meds onboard to take prophylactically for now so I'm hoping for smooth sailing with Tuesday's infusion. If tachycardia continues after adjusting new cardiac meds my MO will consider reducing the T-DM1 dosage, TTfan. They blame my SEs on the Herceptin part of the drug but sometimes I wonder if I'm having more SEs because I have a higher load of HER2+ cells being targeted for the emtansine to do its work. MO doesn't think that's the case but I'm grateful to be in the trial. Sons are home from college and we are on a 10 hr road trip taking youngest back to do computational chemistry research for a month or so. Happy mom ☺️ and nice to focus on something beside medical stuff.
Wanted to add that I too was treated for Lyme. DH had the tick bite with bullseye rash which tested + for Lyme and his doc suggested I also have testing although I didn't find any rash. Mine came back + as well and the infectious disease doc said it is not unusual for sexual partners to infect one another. We were both treated with long term antibiotics. Interesting that some of us have Lyme in common.
Hope you all have a beautiful Memorial Day & a long weekend to go with it!
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Mom2Three, I had two dose reductions during my 7 months on TDM1 because of my platelet count drop. MO assured me I was still getting plenty of drug in my system. I can't imagine that your SEs are because you have more HER2 cells--the stuff is coursing through your body so of course it affects you, and affects each of us in different ways. We may have had NO cancer cells outside our breasts--which is why we could have elected to skip treatment altogether. I think we all need to be careful about drawing conclusions or connecting dots that can't be connected.
Also true of the tick bites. We're all going to have health issues that are unrelated to cancer. When I got Lyme disease, I never saw the tick bite and never had a rash. In the case of my platelet count drop, the hematologist I saw speculated that the Lyme did depress my platelet count coincidentally with the TDM1 SE. But that's a coincidence, not cause and effect.
Best to all as the holiday weekend winds down. I've got my two boys home--whole family together for the first time in 11 months.
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My MO brought this up as an option yesterday. I'm not sure what to do, as my IDC is REALLY small (1.5mm in the biopsy, and less than 1MM microinvasiion in the lumpectomy) but my HER2 is really high (IHC3+ and FISH ratio of 4.8). Should I do nothing, should I do everything? I don't even know how to make this decision.
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Tresjoli2 - Did you take a look at the editorial link I posted for you on the lump-ex thread?
Earlier in this thread TTfan addressed her reasoning through what to do (for something very small though a bit bigger than what you are dealing with)... Her situation is about as close to yours as I can think of.... consider reading through the comments in this section and maybe send Johara (TTfan) a private message...
Maggie
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Yes Maggie I did thank you sooo much. I am meeting with my MO again tomorrow
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tresjoli, I responded on the triple pos thread - I'm happy to chat if you PM me.
Hope all you wonderful folks are doing as well as possible! I'm feeling great again and just relishing every moment! I'll be back to work June 16 so making the most of my "bonus " time off while feeling good! I've gone in to San Francisco four times this past week, wonderful visits to parks, aquariums and museums and will head down to Monterey next week to commune with the sea otters.
Be well!
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thanks guys. I decided to do taxol and herceptin, but not as part of the trial. I don't think I have ever agonized over something so much. But I'm happy now that I've decided
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Glad you have a decision you feel comfortable with. Since cure rates are so good for us early stagers, it probably matters more that you are emotionally at peace with your decision than which one you choose. You will find lots of helpful info on the taxol herceptin only thread in the triple pos forum. It isn't terribly active right now but worth a read. You are also welcome to stay on this thread if you wish - we have at least one other person who opted out of the study and is doing T/H as well as myself doing T/H within the study.
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Just thought I'd check in while on the upswing of treatment. Had my third infusion on Tuesday, and don't know if effects increase over time, but I was quiet for 3 days and taking it easy for a couple more. That said, the 30 minute infusion time is great, and the actual day of chemo I was hungry and happy.
Only had a few nausea pills, and I was achy a couple of days, but Tylenol and heating pad did the trick. Are any of you sensitive to tastes and smells now? I crave Mexican food but took the chicken out of the taco. Fresh vegetables are appealing and I'm not craving sweets.
So now I've gone from stagnant to rampant and returned to water aerobics. I guess it's setting in that surgery was just the beginning and that these treatments are part of life now. Not forever though.
Thank you all for being here. If I'm feeling down, I can always come here.
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Ozoner, some treatments made me feel a little worse than others. But it didn't get consistently worse over time--in terms of the queasiness and general blahness--so don't worry about that. There were some foods that did not appeal to me during treatment, though I didn't have a problem with smells. I tended to crave carbs, which I think is typical with an upset stomach. Lemon ginger tea was helpful.
I know what you mean about the reality hitting you--that there's this whole year of treatment where you can't really forget about the stupid cancer. I hit a point during my year of treatment when I got a little weepy about the whole thing, and it was hard to keep up my positive attitude. Toward the end I was just plain sick of the whole thing. But keep talking yourself through this with the mantras we all develop--it could be so much worse; among women with BC we are very fortunate; the treatment year WILL end and you will no longer think about cancer 100 times a day. It just gets better and better.
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thank you, Isabel. You are a Godsend.
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Ozoner and everyone, even though we are spread out all over the US and will likely never meet, I feel strongly that we're in this together!
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yes!!!
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Feeling down today. I had my Herceptin dose held at the last minute when my MO re-looked on the morning of treatment at the echocardiogram I did almost two weeks before. I had gotten an email from her the day after the test saying it was ok. Now it turns out my LVEF (measure of the heart's ability to pump effectively) was actually too far below my baseline for it to be safe to give the Herceptin. I've been feeling like my exercise tolerance is not what it should be and yesterday even got out of breath walking at a normal pace on flat ground. I guess someone has to get the statistically unlikely side effects but I'm getting really tired of being that person! As you all know, usually the heart recovers off Herceptin but often needs meds and in some percent of women the heart damage is permanent. I'll get another echo Monday and find out whether or not they recommend trying to re-start the Herceptin.
Hmm, would I rather try my best to cure my breast cancer and risk permanent heart failure, or live with a higher recurrence risk and not do any further damage? This is not a question I could have imagined having to ask myself a year ago!!!
Meanwhile I still have really annoying nausea that no one knows what is causing. First they said leftover chemo effect, but its been three months now. Then they said 'scatter to the stomach' from the left sided radiation. But thats been over for 6 weeks now and no improvement. My own guess is that it is either rebound acid reflux from stopping the stomach acid reducing pills or a side effect of the Effexor for hot flashes. More fun questions - would I rather be comfortable but on a pill known to be bad for you long term (omeprazole)? Would I rather have horrible hot flashes that come with palpitations and anxiety in addition to the heat or take pills that make me nauseated and my mouth feel like cotton?
I'm sick of all this, thought I would feel (and be) more normal after finishing surgery, chemo and radiation! Really thinking about stopping all meds except the AI and just let my body heal and take my chances on recurrence. Though they don't know, it seems like 6 months of Herceptin ought to have given me most of the benefit a year would have.
I had planned to return to work Monday, and now I will instead be at the hospital getting more tests. This is both scary and pissing me off! And drinking a glass of wine worsens the stomach issue - not fair!
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TTfan - I'm mirroring you at the moment, though my heart function tested ok. I haven't bounced back from the concurrent chemo/rads and dig a deeper hole with each infusion. Talked with the better half about stopping treatment but ended up getting strong encouragement to stay the course. So guess I'll suck it up, put the big girl panties on and commit to (as in not cancel) treatment #10... An abstract for you, I'll find it again... think it was in the ASCO annual meeting list last week ... 6 months vs 12 months Herceptin treatment, retrospective. Looked briefly and no luck. In sum there was an OS difference 6 vs 12 in retrospect look... enough to stay with the 12 months as protocol but ( to my eye) not an overwhelming difference statistically. Given the time frame I don't think your initial diagnosis would have been represented in the data...ill keep looking but think it may have been a link within an abstract and I read 50+ abstracts... so we'll see...
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TTFan, your situation is incredibly frustrating. My MO at Dana Farber said that the standard course of a year of Herceptin is still really just a guess. There was a small-scale study in Finland several years ago that suggested that NINE WEEKS would be as effective as a year. (And btw, TDM1 is being given for a year only because Herceptin is given for a year--so, likewise, a guess; when I had to go off it because of my low platelets, the doc said 7 months of it was plenty, considering I, like all of us, may not have needed any treatment at all for tiny tumors that hadn't spread.) Like you, I would feel torn and confused about what to do, but I think it's fair to say that going off the Herceptin at this point is probably not an invitation to cancer to return. Also your tumor was grade 2, not grade 3. That said, what are the stats for heart damage from Herceptin that doesn't resolve over time? Is the risk incredibly low?
As for your lingering nausea, it seems like a good idea to go off the hot flash medications to see if that's the culprit?
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Hi, I'm new to this forum. I will be starting a clinical trial on 7/1/15 using Kadcyla and Perjeta. I was randomly selected for this trial. I have an aggressive cancer called micropapillary carcinoma which 75-100% of the time involves the lymph nodes, I have 5/27 lymph nodes positive. With this type of cancer it is recommended to get on any clinical trial if possible. I was lucky I qualified. I have read everyone's post and feel lucky to get this information from others on the SE of TDM1. I only hope my heart and liver agree with this trial. As I start the trial, I'll post how it's going. I plan on checking back to see how you all are doing with this journey. Thanks for sharing your experiences, it helps me understand what might be ahead for me.0
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Swissrn, Just want to wish you the very best as you begin the trial and to say that I have read amazing things about Perjeta's effectiveness. As far as the HER2+ aspect of the disease is concerned, we are lucky that Herceptin, Kadcycla, and Perjeta have been developed. Are you done with AC or still in the midst of it? How are you doing? Sending you strength for the fight!
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I finished my last AC last week Wednesday. My only main SE is some nausea. I think I handled the AC infusions well, so anticipating the Kadcyla and Perjeta treatments will go well too.
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Swissm .... The combo of T-DM1 and Perjeta is showing amazing results with a one two punch on the ligand receptors her2 and her3... Please keep this group updated as you move forward.
Just finished listening to a Cancer Research Institute webinar, Cancer Revealed: How Our Immune System Destroys Tumors. Reminded once again how far treatments have come. Maggie
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Swiss, it sounds like you tolerated the AC incredibly well. I have friends who had a very hard time. Glad to hear this, and it does bode well for TDM1/Perjeta.
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Hey MaggieCat,
In four weeks they'll set me up for concurrent rads. Any advice? I know you've had a hard time of it, beside the fact that you had to drive so far. That will be week 12, or the fifth infusion. Fortunately the radiation is just ten miles from our house.
You guys do so much to keep us afloat, and I like that you have researched so much. The more I meet others, the more I realize how lucky we are, but I'll probably still have a pity party now and then. I'm off to Maryland to see family this weekend and am not planning any activities during chemo/rads.
TV is really intrusive, with so many ads for every drug and medical condition. I'm trying to spend more time "out," but my husband watches a lot of TV. I'm learning this process has a lot of ups and downs, and we're all right there for each other--that makes all the difference.
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About rads... TTfan please share your thoughts as well!!!
Ozoner...
I'll start with the issue that TTfan and I both began experiencing in that timeframe --> acid reflux and nausea. Might be related to rads, can't really say... but.... if at any point you experience any stomach acidity, mild stomach "issues", address it asap with MO/RO and have your roll of tums at hand while you work through what they want to do!
There are several things you'll be able to control that living away from home were difficult for me. Stay with your exercise routine and if needed go easier on yourself as your sessions build, but keep that routine and just move. Same thing for other normal activities (eating, etc), stay with them as much as you can.
In retrospect I think if I had stayed with my normal routine, esp. exercise, and been able to address the reflux quickly, I'd have had a few weeks of being tired but would have bounced back much as others have (comments from the Spring Rads thread).
Hope this helps!!!! Maggie
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Oh, this definitely helped! I've started writing down SEs. Most aren't bad (slightly tingling toes, disinterest in some foods) and I'll be sure not to let the stomach issues get too bad. I'm slowing down w exercise, but still participating. I've been doing gentle joints water aerobics in an outdoor park, and that is such a spirit lifter.
Hoping you can dig deep now that your rads are over and enjoy yourself. Thanks for all your help. It means so much!
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Hi all - update time. I'm very happy to report that my abnormal ejection fraction on cardiac echo was just a calculation error and was only a tad bit lower than my baseline, and more importantly, well above heart failure range. I got back on track with my Herceptin with only a 10 day gap while this got sorted out. Needless to say I'm very annoyed at being put through this stress, but delighted the ticker is actually functioning fine and I should be able to safely complete my year of treatment!
I have also learned that all meds have a downside and that I seem to be exceptionally good at finding them
! My chronic nausea turned out to be from the Effexor I was prescribed for hot flashes. I was so eager for relief that I did not do my homework before agreeing to take it. Had I researched more then, I would have known that this med is much easier to start than to stop! I'm currently a week into what is a nasty withdrawal syndrome, complete with diarrhea, headache, and worst of all what others describe as brain zaps - like an electric current running through my head randomly and any time I move either my head or eyes to the side quickly. It comes with so much dizziness/vertigo I can't drive or even stay upright without something to grab onto when it hits. It's just starting to decrease a little bit in frequency and intensity after a week but I still don't dare drive as I can't look quickly to the side or behind me without the world swimming. So my planned return to work is again delayed. My MO knew nothing about this but a little online research made it very clear what was going on. Unfortunately it can persist for months, but I'm hoping and praying it goes away much sooner than that for me since I was only on it a month or so. Despite these uncomfortable feelings, I'm so relieved that the nausea is now gone!!!I would also think twice or more before starting Omeprazole or the other PPI type acid reducing drugs. They can also be tough to stop and have recently been convincingly linked to an increase in heart attacks etc., even with as little as two weeks of use. My MO and her NP handed them out like candy and millions of Americans are on them. As it turns out, reflux symptoms (heartburn) may more often be caused by decreased stomach acid than increased. Not intuitive, but what I read and have found to be true is that the acid is what tells the sphincter between stomach and esophagus to stay closed when you are not swallowing. Without enough acid, it stays open and the stomach acid that is there backs up the esophagus and voila - heartburn. I am now taking hydrochloric acid pills with my meals - cheap and available in any healthfood store. The reflux is gone!
So I've replaced nausea and heartburn with episodes of dizziness - but all in all, I'm happy I sorted it out and am on the road to recovery. Also happy to say that the med I was more worried about, the AI Arimidex, has caused no problems for me after 7 or 8 weeks of taking it. Sure am hoping it stays that way, since that's the one we ER+ folks have to take for at least 5 years. It is now, happily, the only Rx I am on (other than Herceptin of course ).
Thanks for all the support after my pity party, hoping you are all staying as SE free as possible!
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Oh, I am so happy for you! We are so inspired by your journey TTfan, and you who are ahead in the trials are trailblazers for us.
I will try to use Tums more for heartburn, and I'm slowly weaning myself off the nausea medicine. It's weird, isn't it, to have a new symptom and not know if it's real or if we're just imagining it.
Fantastic news about your heart!
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So... maybe I WON"T pick-up that prilosec refill at Walgreen's today..... Off to Sunday stretch yoga class and then some reading up on prilosec... Happy Father's Day to all!!!
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ttfan, thank you for the detailed report--and thank goodness your heart is fine and that you have banished the nausea. May your withdrawal symptoms pass quickly. You've been through the wringer.
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Thanks Isabel and hi every one! I am feeling SO much better! I'm off the Priilosec and the Effexor. The strange withdrawal effects are finally 98% gone. Yayyy! I'm taking a little extra HCl (stomach acid ) in a capsule with my meals when I remember. I'm sure I can phase that out soon too. I went to work yesterday for the first time in 5 months! It was great to see people and exercise parts of my brain that have been lying dormant for awhile! Next week I'll start back 3 days a week at the hospital and another day from home catching up on email/online trainings etc. I'm excited to be figuring out what my (cliched but true) new normal will look like!
Hope all of you are well. Maggie, are you sorting out the GI issues?
Love to all!
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Good morning ladies! Infusion #10 done. 7 remaining w/ 6 - July through October - scheduled!
Isabel - Your encouraging words stay with me. Here's my version of what you wrote..."... if I've made it this far, I can go the distance".
Interesting TTfan about the digestion aids. I took daily probiotics along with Metagest (betaine HCl) and Vital-Zymes (digestive enzymes) with every meal (per my nutritional FNP) until the stomach upset in late March/early April. Stopped most of the supplements at that point and am now adding supplements back. Hope I'll be able to switch off from the prilosec too! Think I'll send my FNP a query and she what she thinks.
No one said this was going to be easy, but little by little we are getting it done!
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