TRIPLE POSITIVE GROUP
Comments
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I was on a prescription vitamin B for years before cancer and chemo. I think that was why my neuropathy was minimal.
I take: https://www.webmd.com/drugs/2/drug-77966/folbee-or...
Vicky
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I had TCHP chemo and my onc reduced the taxotere after #3 because of tne neuropathy. I’m 7 months past chemo and I still have no feeling in 3/4 of my feet. My hands feel slightly better and my hearing which was also affected seems to be getting better. My new oncologist ( fired tne first one when he prescribed oxicontin and cymbalta for the nueropathy) said that he would have stopped my chemo at 4 rounds. I tried some pill but stopped when it upset my stomach. I read somewhere t reduce sugar intake tne day of chemo because the neuropathy had something to do with excess glucose. I had gestational diabetes’s 2x so maybe that’s why I got it so bad and I also found it odd then tnat my onco Office served grape juice - very high sugar content- during infusions. I never saw a single person icing at my chemo place and there were always 10 or more people at all times. My infusions took 5-6 hours each time.
I don’t have any pain, just numbness.
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hapb, it was so fun. That group that i have there is incredible. More than half of them cried with me when i was diagnosed. They are older then me and sorta took over as my moms and dads. Both mine are gone. So to have them be there every step of the way is great. It gets a little tense when I need a ride though. They get Feisty when it comes to deciding who is going to take me.
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Question for people who did TCHP: did all your hair fall out, or just the top? I was cold capping but it didn't work very well so I shaved my head over the weekend. I have a huge bald spot on top of my head, and just want to know if I should expect the rest of it to go since I won't be cold capping for the last 4 rounds.
Also, did you lose eyebrows and lashes?
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tld2017 - I stopped Taxol after 8 infusions with the support of my MO. She said that if I had had node involvement she would have encouraged me to continue in spite of the very painful neuropathy. Herceptin alone wasn't a problem for me (and I did the 30 minute infusions every 3 weeks after I finished the taxol) although I appreciate that it is for many. I knew there was a heart risk. Obviously the reason we get quarterly echos is to monitor for heart damage.
Once I finished the herceptin, I made an exercise commitment. Fired up the fitbit and have continued playing golf and going to stretch and flex more consistently. We have an Aug. vacation planned (52nd wedding anniversary) which will involve a lot of walking and I am determined to be ready.
Juli - Especially if you are going to be a "snow bird", consider Arizona. I have been extremely pleased with my oncology team and chemo was only 2 miles from my house. We've been in the Phoenix area for 20 years. We followed my parents who had moved here in 1980. We have many midwesterners who winter here.
Retirement is an adjustment. One of the things I told clients who were looking at retirement areas was not to get housing that is too small. Most of us need space alone. In retirement, not only will you be spending more time together but we do lots more entertaining than we ever did pre-retirement. And if you are somewhere warm, you will have winter visitors. I love living in a senior retirement community. Always lots going on and someone to do it with. Welcome to the next chapter of your life.
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Hapa, I lost all my hair on TCHP. It was rough at first adjusting but in a way freeing not to worry about hairstyle especially in winter. One of the best pieces of advice I was given was to take pictures of my eyebrows!! I know that sounds strange. Where it came in really handy was knowing where my natural brow line used to be when I wanted to draw it on. Eyelashes were not as noticeable for me but no brows made me look really sick.
LTWJ, I have neuropathy....not from chemo but from MS. What’s interesting is that neurologists recommend limiting sugar for MS also so it stands to reason it is helpful for all neuro symptoms. Another thing that is extremely helpful alleviating neuropathy in the feet is movement. It is a habit for me now. No matter what I am doing, especially if I sit & watch tv, I keep my feet moving usually in a circular motion kinda like fidgeting! It really helps. I know MOs tend to stop chemo early as a rule so that the neuropathy isn’t permanent. You might ask if you could try a low dose of Gabapentin first to see if that helps.
Taco, so many people have recommended Arizona to us & ive heard nothing but good things about the healthcare there. Will need to check that out!
Have a good night all
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I did TCH but not the P.
Cold caps worked for me but I wish I had known better how to use them (freeze as in dry ice freeze not the freezer and dampen the head hair). I lost about 40% of my hair.
My eyelashes feel out and came back three times. The third time I got an Rx for Lattise. They are very long now but not as thick as before. As for my eyebrows, they thinned and came back with a nice natural shape. I won't have to wax ever!
Lost all underarm hair and what came back (like three hairs) can be plucked. I shave my legs but not very often. These are GREAT things!
OK...here is what no one talks about. I lost my pubic hair ... every single one. I just did not realize that would happen. I know that seems dumb b/c I clearly read in my center's reference book, "You may lose all your hair." I just didn't think that included pubic hair. Yes, it came back but like the other hair on my body it is different.
As Juli24 wrote, make pictures or you will forget. As for freeing ... YES!! I will always keep this semi-buzzed haircut. Shampoo, gel, and go. I also did not realize how much time I once spent in the shower shaving.
As I look back on the last 20 months, I think I have figured out it wasn't about losing my hair ... It was about not knowing how I would be on the other side of treatment. It was the unknown.
Now that I know (and hapa you will too), I like the way I look. It just took time.
Best wishes all. I am off for a family vacation with DH, son & DIL, and good friends. I may not be posting as often for the next week.
Vicky
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Have a great time Vicky!
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vicky, i was surprised to lose my pubic hair also, it has grown back but not much there. I guess i never thought about that area. As the same as you, my under arm hair came back on the right side, not on the radiated side. Leg hair get thin, shave about 1x a month. I had THP& AC.
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I'm still a couple of weeks away from tx but had a good friend with OC so knew that "losing your hair" means losing *all* of your hair. :-(
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When I cut my hair short I lost all the hair on the top of my head first as well from putting my hat on and off. The hairs were basically all sitting loose in the follicle waiting for something to pull them out. It was so annoying to look like I had male pattern balding. I'm 4 weeks PFC and have maybe half or a little less of my eyebrows left so they can be filled in super easy and look fine. Eyelashes haven't noticeably thinned but I am missing a small chunk. I expect both of these might still go from what I've read of other women's experiences.
I'm actually starting to think about that now that i'm done chemo- did anyone have issues with the crown of their head growing slower? Now that mine should start growing back I'm wondering if I should be more careful about constantly putting hats on and off all day-- sort of going with how jeans can rub leg hair off etc.
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Nose hairs! Nobody told me that chemo could "fry" your nose hairs. For me, the consequence of having no nose hair was sneezing - lots and lots of sneezing. Every day was springtime allergy day. A few months ago, I noticed that the sneezing had stopped. Sure enough - I now had itsy, bitsy nose hairs. I love my itsy, bitsy nose hairs!
JVP - I don't know if hats are causing the problem - but your jean analogy makes sense to me. I still have thin hair on my sides and top of the head. I don't know if it is from the chemo or the letrozole. Fortunately, I have grown my own "hair topper" and it covers those issues. The picture I use is recent, and I don't think the thinning hair is obvious.
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hap - I have been aware of the Finnish trials regarding shorter course Herceptin, they have been looking at this for a while. What the SOLD trial data show is that 9 weeks does not equal the full year in results, as there were more short course patients that recurred, but that 9 weeks of Herceptin is better than nothing if co-morbidities and cost are concerns. Important to note that this trial was not for Herceptin only - it was combined with Taxotere and FEC, so extrapolating the data for someone who did not do the full number of chemo doses would not be accurate. Also in the 9 week arm, there were only 1% fewer cardiac issues - 3% in the long arm, 2% in the short arm. Also important to note is that those who had higher doses of chemo had better DFS, even in the short course arm - reinforcing the synergistic action between taxane and Herceptin. I believe the purpose of the trial was to show that shorter course Herceptin would be equivalent because the original time frame for Herceptin administration - 1 year - was arbitrarily chosen in the original Herceptin trials. The purpose of a non-inferiority trial is to show that a new drug or method is not unacceptably less beneficial, i.e. can less work as well as more - or whatever is being evaluated, with the original trial result being used as the control arm. In the case of this trial the answer was that 9 weeks was not comparable to a full year, but some Herceptin is better than none.
JVP - yes, my hair grew back more slowly on top, and I think that is pretty common. Unfortunately, that is what we are looking at in the mirror so it seems even slower! I have less underarm hair than before, but did not have rads so no connection there. I did have ALND surgery but have equivalent amount of underarm hair on both sides. I did have to shave my legs all through chemo, just not as often, and never lost all hair on my head or lashes or brows, and my lashes did not cycle - just lost about 3/4 of them the one time. Brows did not come back as strong - I actually just had them microbladed to give better shape, but they are also blond so they needed some help. Lashes returned as they were, but they had thinned prior to treatment due to being post-menopausal.
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hap - yes, he is making the point that some is better than none, and particularly for those with co-morbidities or risk of heart disease due to age. I wouldn't say he disagrees with the conclusion - he suggests cherry-picking patients based on their cardiac risk and using a shorter course for those patients.The risks for any type of treatment go up with age - that is one reason why rads for those over 70 is sometimes not recommended, and why Herceptin can increase pre-existing cardiac risk. However, I would again reiterate that this trial was conducted with all participants receiving the same six cycles of chemo, this was not a study of Herceptin only therapy. The 9 week participants just did not continue to receive the continued Herceptin as mono-therapy afterward.
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HapB: risks are highest for women whose LVEF was just above 55% (which is some kind of cutoff value) IIRC. I can't remember where I read that though.
I think there's some disagreement over whether chemo causes heart failure in people who would not have otherwise had it, or if it speeds the onset for people who were already headed down that road. Of course getting heart failure later in life is better than sooner, so chemo is still a net negative for a lot of people. There is also of course the risk of leukemia, or that the drop in WBC allows some previously existing but latent condition to flourish, both of which concern me greatly, but those as far as I know are risks of "hard" chemo and not Herceptin. And the risk of heart failure from Herceptin is higher when it is combined with anthracyclines.
Still, regardless of how much they reduce the risk of heart failure or how much better they've gotten at catching it before it causes irreversible damage, it still sucks for those who have had this (or any other) complication and it did not reverse after treatment was stopped. I hope I don't become one of those people, but its a risk I've decided to swallow because the other risk - the risk of recurrence and metastasis - was SO high, and the result of that SO dire that it was pretty much a no-brainer for me. And this is from someone who signed up for a clinical trial instead of doing chemo when we thought my cancer was Her2-.
BTW, since you asked, I am 41. My heart was in excellent shape at my echocardiogram (it was described as VERY ATHLETIC in all caps in the report) so if things head south for me I am definitely blaming the chemo. My LVEF was 70% and I'm VERY interested to see if it holds up at my next echo. I don't think they consider it heart failure unless your LVEF drops below a certain level but I will be concerned with any change. Though I'm definitely not running as hard since I started chemo so I don't know if I should expect no drop at all.
Thanks everyone for the info on hair loss. My pubes are holding up at about 50% after two infusions and I'm still shaving my legs. I feel kind of ripped off that so much of my head hair fell off despite the cold capping, but I still have body hair to deal with!
Juli24 - thanks for the tip on eyebrows, though I am horrible at makeup stuff so I will either have to do stick-ons or just go without. And as another Arizonan, and one who grew up in the midwest, I also recommend moving here.
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hap - too many variables to stratify, particularly in light of the fact that this was a non-inferiority study using the original study as the control.
hapa - generally, your oncologist would be looking for a drop in LVEF of 10 points or 10% in the quarter after onset of treatment before considering discontinuing. Also, a drop below a LVEF of 50. It is not uncommon, or particularly alarming, to see a gradual drop over the course of the year of treatment. That is a sign of the type of reversible drop in LVEF you often see with Herceptin, and you should not consider it a problem unless it becomes a trend over time. I think it may be unrealistic to expect no drop at all. Also, important to note that these cardiac exams have some degree of subjectivity - you are relying on a human to do the measurements, so a few percentage points either way is not uncommon even in two exams done the same day.
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Ugh, I give up on taking the L-Glutamine during chemo .... I went in to my 7th chemo treatment yesterday armed with info about the benefits of L-Glutamine for neuropathy and a nurse practitioner came over during my infusion to talk about it. She said that she and my onc had read more about it since I have been rather insistent about wanting to take it and they still do not think that I should. B6 and B Complex twice daily are the only supplements that they will approve. Her two main points were that Glutamine has not been proven in major studies to help and could hinder the chemotherapy and that there are some studies that show it could help the cancer cells grow. She went on for ten minutes about it and I wish that I could remember everything that she said but I was getting the benedryl part of my infusion and was getting that fun little woozy feeling at the time. So many more articles seem to say that it helps with neuropathy but there are a few that say it could feed the cancer. So I give up. She prescribed Gabapentin 300 mg to take at nighttime and said she could up it if that does not help. So now I have $45 of L-Glutamine that I am not supposed to take. Frustrated and want to take it anyway but my husband said I need to trust my oncologist on this and do what he says. I read on these boards time and time again that other oncologists approve of it and even suggest it so it's just annoying... Sorry for the vent!
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I've had it with reading the pejorative commentary from you, hapb, when you make judgements about the opinions of others regarding diet and lifestyle. "Vehemently insist that diet and lifestyle have no effect on health". That statement is utter nonsense. Some may choose not to follow the advice that does not mean they are idiots. If I get kicked off the board, then so be it. Look up the definition of troll. Post all you want about the dangers of Herceptin and how everyone should be a vegetarian. Stop criticizing people who don't agree with you. Your preachy commentary is not helpful.
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Amen
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tld - if your MO and NP won't let you take it now, I would just wait until chemo is over and then start the L-Glutamine you have waiting in reserve.
Alternatively you could eat foods high in amino acids and try to get it that way. Here is a link to foods high in amino acids.
https://www.livestrong.com/article/249606-foods-high-in-essential-amino-acids/
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I'm really confused. As far as I can google, glutamine is basically just protein? So while I don't understand why an onc would be against taking it as a supplement, I also don't understand why anyone would need to take a supplement for it when you can just eat protein. Or drink a protein shake, I guess, if you're really bent on getting extra glutamine. Maybe the onc is worried about the additives in these supplements, since they aren't regulated by the FDA and are manufactured without oversight. I drink protein shakes all the time and never even asked my doctor about it, I just assumed it was fine.
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Also, can I just throw in there that I have no idea why I'm stage III? That's what my onc has stage III on all my reports though if I do the math and follow the tables myself I come up with IIB. Ok, I realize it doesn't even matter what the label is, if he were to write II instead of III it does nothing to change my cancer, but it's been bugging me and now I've spat it out somewhere so hopefully I can just forget about it.
Thanks for listening ladies.
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((((((((Suburbs)))))))
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L Glutamine is an amino acid found in some proteins, and is thought to be beneficial in preventing neuropathy during chemo. It is used in supplemental form because I don't think you could eat enough protein daily to ingest enough l-glutamine to provide the recommendated amount. I used NOW Sports brand and it only contained free form l-glutamine, nothing else.
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Juli24 - Absolutely. Thank you, Suburbs!
Hap - It often seems as if you deliberately misread what is written here so that you can post your opposing opinions. You are entitled to your opinions, but not to distort what others are saying in order to make whatever point it is that you want to make.
tld1027's post above states: "I read on these boards time and time again that other oncologists approve of it and even suggest it [L-Glutamine]." She is frustrated that her particular oncologist does not recommend something that other oncologists do recommend. Many/most women on this board who are taking supplements are in fact listening to the doctors treating them.
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just reminding everyone we have a block user button! 😊 I want my happy helpful board back...please please!
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Tresjoli, I just used my block button.
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Troll
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I find this subject on supplements troubling. I took them before and continue thru chemo. Every time I saw my Oncologist (i.e. every 21 days). I handed in a list of my meds (prescription and non). Now, I wonder if I got it right or not.
Vicky
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HapB ... what if he didn't know? Not a Q to answer just what I am thinking.
Vicky
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