ATEMPT Clinical Trial - Roll Call
Comments
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Ozoner, my heart is pounding after reading your post. OMG!!!!!! This is INEXCUSABLE. You must write a letter and/or speak to the manager of the office!!!! First the rage, then the black humor....
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Hey Jessica! Yes, I'm still waiting for the humor part to kick in fully. . . But even now there's an amused smile developing. I think I definitely should write the office manager if it can prevent this from happening to even one other person.
And, it's a quiet lesson that although I choose to put worry aside when possible, there are no guarantees. . . And that we should live fully now, every moment, because this is what we have.
So today, I'm snowed in and playing with my dogs. It's a good, good day.
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ditto what Isabel said!!! Hooray for you for handling the emotions so well but that should never happen!
Serenitysis, I am so very sorry to hear about your sister! My friend and I are slowly getting to the humor piece, she is an amazing person and taking this in stride as she has the rest of life's challenges. I don'wish this sucky club on anyone, but once we're here, what an amazing support we can be for each other
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TTFan - that's awful! They should definitely change the system! What a lot of undue stress to put on patients. OY!
On Thursday I had infusion #9 - halfway through! I can't believe it (and I can't believe I still have 8 more to go....) My symptom list keeps growing, but nothing too horrible. Same malaise for a few days after treatment, a little nausea, bloody nose. This last time my face broke out into yucky blemishes (good thing for concealer!) and I started to be a little constipated. TMI anyone?
I do have a question: has anyone had toenail problems? I looked down at my toenails a couple of days ago and one of them is mostly black & blue. I don't remember stubbing it or anything. I am destined to lose them?
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My nails got very thin and ripped easily. I got biotin gummies and take omega 3 (prescription Lovasa). Started taking calcium and vitamin D for osteoarthritis and a multivitamin. I'm pretty bad about vitamins but want my skin, nails, and hair to be healthy.
Laura, for me the constipation was actually the worst side effect, so don't let it get out of hand. We have so many hurdles to leap, and with our treatment, it seems like nausea meds and other prescription have their good and bad points.
Congratulations on hitting your halfway mark!!!
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Laura - I had a toenail "lift" about 1/2 way thru treatment. I put a band aid on it for protection. The new nail growth is weak. I am watching for re-growth that is more like my other nails. My fingernails are growing stronger now ( ~ 7 weeks from last infusion), noticed by the manicurist. Maggie
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Laura61-- Congrats on passing the halfway point! I know it doesn't feel like it, but soon the whole thing will be in the rearview mirror! I didn't have toenail issues, but my thumbnails developed width-wise ridges and lengthwise cracks. Oddly, i finished treatment 1 1/2 yrs ago but those nails have continued to grow in with the ridges. It's my TDM1 souvenir! (Nothing to complain about in the least, but there they are.)
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Congrats Laura! My nails aren't as strong as they used to be, bend easily and I have the thumbnail ridges too. Toenails are ok. I started taking Tamoxifen last week so I'm looking out for those side effects.
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I meet with my MO before every treatment and I am his only patient receiving T-DM1 - Thursday will be #9. He wanted me to ask if anyone else does not experience the metallic taste after their treatments? I haven't since my 5th.
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TD... No metallic taste in my case. Congrats in being a bit past 1/2 way!!!!
2 1/2 months since last infusion. Getting comments from others noticing my energy level returning and my skin tone looking healthy once again...
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TinyDancer, I did have the metallic taste but it was not terrible and it didn't happen consistently after every treatment. I think it went away after I had a dose reduction, but this is another one of those details that I'm starting to forget.
Maggie, good news!
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Thanks Maggie and Isabel, I will let him know tomorrow. Congrats Maggie
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Hey Tiny Dancer. I only had seven TDM-1 infusions, and while I didn't have a metallic taste exactly, I developed an aversion to food. Cucumber slices, bread, and even Dr. Pepper had a strange powdery taste. I would spit out any kind of bagel, cake, or muffin-- I couldn't swallow bites of baked goods. When I could eat, I would gulp down the food because I was so hungry. Baked salmon, tomatoes, and watermelon were appealing. I lost about 40 pounds but gained back ten when I switched to Herceptin only.
You are doing fantastic as you keep participating in the trial! Besides treating my BC, the chemo has allowed me to quit wearing plus size clothes--a definite silver lining that is greatly appreciated as I work through this challenging year. Your MO seems to be taking your treatment seriously and giving you the verybest of care.
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Thanks Ozoner. Yes I am very happy with my MO and Monday is my 6 week follow up with my RO. I'm doing well, except for sore throat now. I have a little nausea at times now that I'm on Tamoxifen. Sometimes I wish I had an aversion to food, baked goods and anything chocolate are my weakness. Congratulations on your weight loss. Did the Biotin help your nails? I am so happy you are doing so well. This is an amazing support group we have here
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Yes, the biotin and vitamins improved my nails, and for the first time in recent years, they are manicured! When I started taking Aromasin, my hair started shedding a little, so I'm overjoyed that the supplementation is working. We just gotta keep on dancing!
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I had a metallic taste with the earlier treatments, but that's subsided. Food also doesn't taste great to me overall and after I eat sweets I usually have to brush my teeth because it gives me a bad taste. Doesn't seem to stop me from eating them though!
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I had treatment #5 last week. I have not had the metallic taste, but I do have a bad taste of some kind in my mouth after I eat so always want to brush my teeth immediately. I think it's just the taste of food lingering that bothers me.
After the last two treatments, I have had fairly severe fatigue. After #4 it started on Day 3 (Thursday after my Tuesday treatment) where I was overcome by extreme sleepiness around mid-day, and an overall feeling of heaviness and having no energy. It lasted for 3 days, during which I napped a lot, and then lifted. At my appointment last week my MO thought it sounded like some kind of bug, but I didn't think so because I had no other symptoms and had really never felt that way before. This time I've had it again, starting at almost the same time but a little less in duration. So it seems to me that it's treatment related.
I also have developed low sodium. They are trying to determine if that's treatment-related, so the "prescription" is to add a little salt to my diet and to eat potato chips!! So that's a treat! Fortunately that is something I feel like eating!
I had no nausea this time for the first time, so that was a relief! Onward!
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Serenity Sis, were you taking Compazine for the nausea? That drug made me a zombie--couldn't stay awake. If not, then I agree with you, the fatigue must be treatment related.
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Multi-day fatigue after treatments - Yes. Husband got really good at recognizing the on-set during the last 4 or 5 infusion cycles.Tended to start 5 - 7 days after the infusion. My nurse manager connected it to the "nadir"....
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MaggieCat and IsabelArcher, thank you for your replies. Yes I have been taking Compazine, one pill each morning for about a week after treatment to control nausea. That could be it, although I'm still taking it by the time the severe daytime fatigue passes, so I don't know. Also treatment #4 was the first time it happened, and I was taking it before then too. I'm not happy that you also experienced this type of fatigue, Maggie, but I'm glad to hear another patient had a similar experience. I'll discuss both of these with my MO next time. It's very hard to tease out the causes of all these side effects
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Serenitysis... A couple of suggestions/considerations... See about switching to Zofran, less SEs especially when you are dealing with fatigue. Option for B-12 shots? I found B-12 shots helped me with energy and wasn't an issue for my MO.
It was hard for me to just let go and take the 3 - 4 days slower when the fatigue hit. It was a surprise when it ended, each and every time, almost like a light being turned back on, I felt like "me" again.
My last infusion was 11/20/15. I hit the low energy days about Thanksgiving. Since then I've been on an upward trend, getting better and better. My goal, as I sat getting that last infusion, was to be back at the gym including Power Pilates prior to my 3 month checkup. Well, I'm back and added regular Pilates to the mix as two weeks ago. The checkup is a week from today. So new goal will be Power Pilates by the 6 month checkup!
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Yay, MaggieCat! I haven't attempted Pilates and am so impressed by your uplifting spirit.
I took Compazine, and it definitely has a sedating effect. Of course, for me, the constipation was nearly as bad as the nausea. I'd never hadit before and let it get too bad
SerenitySis, treatment-related fatigue was a real SE for me. Since I don't have kids to take care of and am retired, I gave myself over to it and napped several days when it hit. I have never slept during the day, so this fatigued feeling was totally a new experience, and sometimes I played favorite music as I rested in the sunroom.
I had more energy in the mornings, so I took advantage of those hours. You are doing amazing . . . Don't let your MO tell you that what you've been feeling doesn't have to do with your treatment!
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Hi there. My MO (and the whole team) has often discounted my side effects as a "bug" or something else too. I wonder if it's a DF thing!? I also am super tired after each infusion and have to get a total of 12-13 hours of sleep in a 24 hour period for the first 2 days (2-3 hour nap, plus 10 hours sleep at night). I'm also not a napper at all, so this is strange for me! I also sometimes get a second wave too 3 or 4 days in when I feel horrible for a day or two. I have learned that I really need to take it extra easy the first few days or I just feel horrible.
#10 tomorrow...
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Maggie, I started the first treatment with Zofran, and I had a terrible headache within 15 min. of taking it. Also had bad constipation, they said both of those were a SE of the Zofran. So I've not taken Zofran since the beginning. The treatments also tend to cause constipation, which is why I continue to take senna (a natural laxitive) and/or colace, a stool softener, pretty much daily, as my MO suggested. Controls it quite well.
Laura, I know what you mean about discounting SE's!! That's why I told you I wasn't very happy with my research nurse, because I feel like she does that (is she biased toward the study???). For example I have a bloody nose - not so much actively bleeding, but when I blow my nose there is usually blood. She claimed that was due to the cold weather. I said I'd never had that before this! I'm pretty sure my MO will accept this fatigue as a SE when I report almost the exact same thing for a second time. It even came on at almost the exact same time!
As far as the fatigue, I call it the "sleepy" fatigue. I don't have any choice but to take it easy and nap - sometimes I just can't keep my eyes open! I go to bed early most nights now. Once the daytime sleepy fatigue lifts (yes it is almost like a light switch, Maggie!), I'm still exhausted by about 6 PM each day. Fortunately I'm self-employed and work out of my house, so my schedule is flexible!
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Hey everyone-- On the subject of the docs acknowledging that our symptoms are/were in fact SEs of treatment: I think from a medical viewpoint, docs at the outset of the trial were convinced TDM1 wouldn't produce SEs. My oncologist predicted that I would have no SEs at all. I see this as a combination of two things: the logic of how the drug works, in that the "chemo piece" of the drug is delivered directly only to the cancer cells and not to your whole system, as with regular chemo, and her essential optimism. Since the optimism is one reason I went with my onc, I don't have a problem with this. She was surprised by my SEs but not dismissive of them at all, in fact quite responsive.
Also, as I have said before, I suspect those of us who come here to "talk" are the ones who have had SEs--we need each other's support and info. I know that's what drew me here. There are very likely hundreds of women on the trial who don't have SEs and therefore don't seek out a forum like this one. Just a theory of mine. So overall, I imagine what the docs participating in the trial are seeing is mostly smooth sailing.
And one more thing: I tried to keep in mind during my treatment that many chemo cocktails are SO MUCH WORSE. My friends who had two of them--ACT, and TC--had far, far worse SEs on top of losing their hair. They also have lingering issues like short-term memory impairment and neuropathy. I don't mean to minimize anyone's discomfort or pain--all of our SEs are real. But this is the way my post-BC brain works: I'm always trying to accentuate the positive and thinking about how it could be worse! I don't mean to annoy anyone. ;-)
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Isabel - Seconding your thoughts on the very positive aspects of T-DM1. The real proof will be in the data. Maybe you can find out when DF thinks preliminary info will begin to come out (at your next check-up). Maggie
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I was one who had few side effects early on. Then after 7 and 8 they hit hard. Nausea, fatigue etc. Plus I came down with a respiratory infection which lasted 5 weeks and I still have a cough. Not related to chemo but adding to the fun. And here is one for the psychiatrists... Just touching or looking at my port makes me nauseous. Oh well as Isabel says it could be so much worse!
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Maggie, I think data won't be coming in for a long time, because the trial is actually still open for enrollment. I did ask how things were going at my appt. a couple of months ago, and my onc said the trial is going great and there is strong interest among women hoping to get on it.
Wabals-- I totally get that about the port and the nausea. I traveled 3 hrs to Boston for my treatment, and just getting in the car to make the trip would begin the association with the queasiness I knew was coming. There are certain restaurants in Boston that I will NEVER go to again, because I ate at them with my sister after treatment and before driving home. The nausea would hit that night, so I will always have that association. I'm queasy just thinking about those places!
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I don't see why docs would think that TDM1 would not have SE's - women have been taking it for MBC for some time now & the side effects are well-documented. Here's from the Kadcyla website. I'm sure you all have looked at this at some point, and also of course they're listed on the consent form. I have to say I am VERY grateful to not lose my hair. Makes me feel less like a cancer patient! I've had 3 of the SE's so far from the first group, (there's that fatigue!) and 5 from the second, including mild neuropathy in my fingers. I agree this is much easier than other chemotherapies, but it has itschallenges.
The following side effects are common (occurring in greater than 30%) for patients taking Kadcyla™ :
- Increased liver enzymes (AST, ALT)
- Decreased platelet count
- Decreased red blood cells
- Nausea
- Decreased white blood cells
- Fatigue
- Musculoskeletal pain (joint and muscle pain)
- Decreased potassium
These are less common (occurring in 10-29%) side effects for patients receiving Kadcyla™:
- Headache
- Constipation
- Diarrhea
- Nose bleeds
- Peripheral neuropathy (numbness or tingling in hands or feet)
- Vomiting
- Fever
- Abdominal pain
- Cough
- Weakness
- Increased bilirubin
- Dry mouth
- Mouth sores
- Insomnia (trouble sleeping)
- Shortness of breath
- Rash
- Dizziness
Not all side effects are listed above. Side effects that are very rare -- occurring in less than about 10 percent of patients -- are not all listed here. But you should always inform your health care provider if you experience any unusual symptoms.
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One more piece of info: The goal of the trial is to enroll 500 women nationwide. When I started in November there were about 300 total, 25% of whom are in the Taxol-Herceptin arm. So that means only 225 were in the trial arm after two years of enrollment. We're kind of a rare group!
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