TRIPLE POSITIVE GROUP
Comments
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Ingerp - I traveled a lot for work throughout my HP treatments and didnt have any issues other than fatigue. I rested the day after infusions but was good to go by the next day. I felt the best at the half way point in between infusions so a week or so after your H treatment sounds perfect. Good for you that you are planning a weekend get away 😊0
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Laughing/Homemade/deni--thanks so much for the responses. I am getting a little antsy to get through the T phase--just so I can lock in future treatment dates. I still have a weird fear of being told I can't get tx on a particular day after the bloodwork comes back, although I get that that is rare (-ish). One weekend I'm looking at would be two weeks after H, which I gotta think should be absolutely groovy.
If anybody wants to weigh in--I'm also curious how long after T you felt like it was out of your system? I should be done first week in August. I feel like a couple of weeks after that, life <pretty much> gets back to normal.
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And shit! I literally keep forgetting I have rads coming up. I check in with my MO this Friday for the first time since starting tx and my questions will all be about timing of everything I've got left.
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I have searched online for an answer to this but can't find one so I'm coming to where I know someone might have some insight on this!
Tuesday, two weeks ago, I had a mammogram just to check on things after chemo was over and before rads start (tomorrow!). The very next day, I had my radiation simulation for Accuboost, which was a major squish for about 5 minutes (makes the mammogram seem like a walk in the park). I am still so sore under and around that breast. Can this be normal after 2 weeks? I called my breast surgeon's office and spoke with the nurse and she "thought" it was normal but I'm not sure... I've never been sore for long after previous mammos but, of course, now I've had a lumpectomy on that breast 5 months before and additionally had the accuboost simulation, which was quite painful. I know that I am being paranoid and thinking that there is something wrong, and the mammo did come back clear, thank goodness. But I've just never heard of being sore this long after a mammogram. What do you ladies think?0 -
Herceptin drip? I have a CONSTANTLY running nose. I thought it was lingering effects of the Taxotere, plus chemo in general, plus spring allergies, plus my nostrils' hair not being quite back yet. So this is a side effect of Herceptin? I had no idea. Will this runny nose will last for the year I will be on herceptin? Wow.
Ingerp I had taxotere so I cant comment on the taxol. For the taxotere I was okay after a week (definitely good for traveling), but the accumulated fatigue took a bit more to go away. A month after the chemo I was much better in terms of strength to work out for example.
tld I have a mastectomy so I cannot comment but hopefully someone else will. Everything new feels like a cancer symptom to me although I know it isn't.
LaughingGull
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"Herceptin drip? I have a CONSTANTLY running nose. I thought it was lingering effects of the Taxotere, plus chemo in general, plus spring allergies, plus my nostrils' hair not being quite back yet. So this is a side effect of Herceptin? I had no idea. Will this runny nose will last for the year I will be on herceptin? Wow."
I did a search and came up with a few threads here and elsewhere:
- https://community.breastcancer.org/forum/80/topics...
- http://www.butdoctorihatepink.com/2010/01/hercepti...
Happens to me when I ride my bike.
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tld--all I know is you have a hard tumor bed where the surgery was that will continue to be a little funky for a year or more. We're all supposed to be massaging that area following the lumpectomy to try to soften it up, but I don't think many women keep up with it. I wouldn't be surprised if your hooter is extra sensitive for several/many months.
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I had a mammo after my lumpectomy before I started rads...RO wanted to make sure we got it all...and it hurt like a mother and I was sore for weeks. It was brutal...hugs!
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Thanks Homemadesalsa for the links. Yep it is like the lady in the blog describes. At least for me.
Re mammograms and lumpectomy....ouch! Sorry ladies.
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hello Ladies,
I'm back again.
Past few days were crazy busy with work, this past weekend I had a 14 hour long wedding on Friday, then a 13 hour long one on Saturday. I was exhausted on Sunday. I slept till 1pm, ate my lunch, lay down on the couch and slept another 2 hours, LOL. Good news is that my bloodwork is perfect, my tumor markers are very low, and the during the simple physical exam my MO did not feel anything. So I'm good to go for another 3 months. (Then I'll have chest x-ray, abdominal UH, blood tests)
And tomorrow my DH, my mum-in-law and my sister-in-law are going on a mini-holiday, to one of my favorite places on Earth! (Julien Alps, Triglav National Park) We will be whitewater rafting, which I love, but my MO actually laughed out loud when I told her today. She told me that I am "the good kinda crazy", and she will definitely need to know how it goes for my lumpectomy-sentinel node side. We'll see!
Hugs to all of you!
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I am another one who had no SE from H only. However, it did take several weeks before the effects of taxol left me. I had very painful neuropathy. I was 6 months post taxol when we did a almost 3 week car trip - literally left the day after infusion and came back the day before. It was a great trip! I did try to make certain that I walked every day though. My rads were before chemo so I can't comment on how that effects your planning.
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tld2017 ... For peace of mind, I'd physically see and talk to my breast surgeon. As others have shared, this is probably normal. Someone told me that once you have cancer "a cold is never a cold." That why I find peace of mind necessary.
Vicky
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Hi - New to the Triple + group.
Is anyone else doing T+H chemo and using a cold cap? I started 6/1 and was hoping to connect with someone else doing the same thing. Also for the T&H group, are you icing your hands/feet during the Taxol infusion? So uncomfortable, I find the ziplock bags of ice way worse than the cold cap. Hopefully its worth it.
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Has anyone here had an alternative treatment if your heart has been unable to tolerate Herceptin? I have had 4 TCH treatments and have been delayed for platelets and suspended from Herceptin. I know of the studies that say six months are effective, but nothing about just three. I nervously await my oncologist appointment on Monday
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NYMinute, I finished chemo on June 5th but I had to do 12 weekly infusions of THP. I used Penguin cold caps and the frozen mitts and socks. I'd be more than happy to answer any questions that you have. Hoping I can be of some help!
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jstarling - there have been 9 week Herceptin trials - SOLD and FINHER - the purpose of which was to determine whether 9 weeks of Herceptin provided adequate. The standard of care, 12 months, was upheld, but the 9 week protocol showed good results and good news for anyone who has had to discontinue Herceptin early
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<just popping in to say, again, SpecialK you are treasure>
And NYMinute--I did a lot of research about cold capping and icing hands/feet and read too many stories about women who cold capped but lost their hair after tx anyway. I haven't done any of it but have tolerated T/H really well--I'll have #7/12 tomorrow and no neuropathy yet. My hair is gone but I'm getting into my bandanas. ;-)
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Hi NYminute,
I was scheduled for 12 weeks of Taxol, 1 year of Herceptin. They switched me to Abraxane last week because of a reaction to Taxol.
I am six weeks in, using Penguin cold caps (Treatment #6 was this morning). Virtually no hair less to report at this point. I have fine, thin hair to begin with, and I have no doubt that is paying off! I'm not icing my hands and feet, but I'm happy to exchange info about cold capping - so far, I could not be happier with the experience!
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NYMinute - I'm not on taxol, but I cold capped on TCHP and was one of those who lost her hair anyway. I look worse than bald - I've got this friar tuck look going with little tufts sticking out of the (rather large) bald spot here and there. I'm still cold capping, as I'm told the hair will grow back quicker, though I don't think there's any studies to back that up. I used dignicap and I have to say the first 20-30 minutes when the cap is cooling down are excruciatingly uncomfortable, just as my MO promised it would be. After that it's ok but if you have to unhook and go to the bathroom, you have to tolerate the cooling again (though it will be faster as you're not starting from room temp). You freeze your fanny off the whole time you're infusing though, for me that's the toughest part of it. However, I'm the sort who can tolerate quite a bit so long as I know it's temporary. Dignicap is free for breast cancer patients at my cancer center so I see no reason not to do it. If you're paying for it and hoping for a return on investment, you may not get one. I definitely would not drop hundreds or thousands of dollars for what I got, which was basically male pattern baldness.
One more thing I wanted to mention about cold-capping: you're not supposed to brush or wash your hair very often. They recommended twice a week to me for washing at most, and to comb it with a wide tooth comb once or twice a day, and to avoid tight ponytails, styling products, etc. This was ultimately incompatible with my lifestyle. I work out almost every day, and I work in a cleanroom where I have to have my hair pulled back and under a hood and hair cap. I did my best but my head was an itchy gross mess all the time and I'm sure donning and doffing the hood and hair cap several times a day didn't help with the hair loss. I was almost relieved to shave it off by the time I gave up.
Which brings me to my last point: I probably would have kept more hair if I had just buzzed it short from the get go. I thought about doing this many times, but in my mind it just defeated the purpose of cold capping. So I didn't. But then I didn't realize how awful it would look once it fell out, so now I wish I had. I think I would have kept more of the hairs and would look less bald, and I honestly don't think I look that horrible with a buzz cut - or at least I wouldn't if I had a full head of hair. In any event, I would at least cut my hair short enough to not need to comb it at the start because every time I combed it a huge wad of hair would come out.
Best of luck with your cold capping (or not, if that's what you choose).
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NYMinute
I cold capped and was extremely happy with the results. The shorter the hair, the better the results usually. Dampen your hair and change the part often.
Here is a forum for the topic:
All Topics → Forum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Cap Users Past and Present, to Save Hair
Topic: Cold Cap Users Past and Present, to Save Hair
Forum: Managing Side Effects of Breast Cancer and Its Treatment — This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.Vicky
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Thanks, SpecialK, I’m sure it will be part of the Monday consultation
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I didn’t cold cap as my oncology clinic said they had never had anyone do it and I’ve been to 2 large clinics and have never seen anyone do it. My hair is slow to grow but I will say that the Aromasin has ruined it. I have very thin hair now and definite make pattern baldness and they all say it’s due to the aromasin. Noticibly thin on top and the back
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Like Taco I was a good candidate for brachytherapy at age 49.
Ingerp, no problem traveling while on H only. I'm a bit tired the afternoon of and sometimes the day after. Even the nasal drip and dry bloody nose has decreased.
NYMinute, I did not cold cap but I did ice my fingernails and toe nails and am glad I did.
4 months past final Taxol and my hair is probably 3/4". Eyebrows are thining again and that bummed me out however I'm starting to see some growth again.
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Phoenix—thanks for this. I didn’t realize until I talked to my MO yesterday that the every-three-weeks H dose is triple what I have been getting. That + not getting any pre-meds at that point (which I understand is what will happen) has me just the eensiest bit concerned about how I’ll react. Good news on your hair—sorry about the brows, but I’m sure it’ll all normalize soon. You should be looking great for the holidays!!
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I restarted herceptin three weeks ago with the loading dose (higher than the usual dose) since I had time off between chemo for surgery and the side effects have been minor. Compared to chemo, it's nothing at all (granted, I was TCHP). I think if I went straight from chemo to this I probably wouldn't have noticed much but I had 2 months off between. I was nauseous the following day & had to take meds for it, felt a little bit run down over the next week or so and had a tiny bit of stomach/ diarrhea issues. I also started having issues sleeping through the night for about a week and a half. None of this was really enough to interfere with my life very much but I lazed around a bit more. I'd say the side effects were inconvenient but more comparable to like having a stuffy nose and a slightly sore throat or something like that.
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I have 2 Herceptins left and I had the stuffy nose, sore throat at the beginning of the Hercept. Only but that has all gone away and no problems from it all since. I'm not getting tne Perjeta, I had that with my TCHP and had crazy diarrhea from it. I had it with my 6 chemos but not with this part. Almost done
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Yes, H every three weeks is a triple dose. I was able to continue to get it in 30 minutes after the first time which I think was 60 minutes. If problems, MO will slow down the infusion. Most of us do fine. It's just the hassle of showing up! I started AI's 6 weeks after taxol.
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Thanks for all the info/feedback. In my head five more Taxols seems like a lot—not sure why I feel like four will feel a lot closer to the end. And I have a feeling July will d-r-a-g. By the end I’ll only have one T left. :-D
Now I’m looking forward to calling my RO’s office next week and locking down those appointments. I really think I can start rads 8/20, which should have me finishing mid-September. Still looking at last weekend of September for a weekend away
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THANK YOU all for the feedback re: cold capping and icing.
I am giving cold capping a go and so far having great results. My breast center uses Paxman Cold Caps. Definitely thinning out a bit after #4 and my scalp is not very happy, lots of dandruff. But I'll take it. No noticeable hair loss, except by me. I do find that taking Acetaminophen 30min prior to capping is very helpful with the brain freeze. And lots of warm blankets!
I am icing my hands and feet to aid the nails and neuropathy. For those that are doing it, are you using special hand/feet cooling ice packs? I use ziplocks of ice and put on spa gloves/thin socks to protect my skin. If there is something better out there, would love to know. Was thinking of bringing in my own gel packs.
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For anyone who went from weekly Taxol to H&P every 3 weeks--were you ever allowed to change the day that you got the treatment? I am currently on a Friday schedule, but may want to move that to Thursdays in the future.
Also--my CT was clear and my liver enzymes were down. It was the taxol. Thank goodness! 4 more left!!
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