TRIPLE POSITIVE GROUP
Comments
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linda - I hear you on the ark thing! What is up with all of this rain - I am over it! Tampa is hard hit today - bunch of road closures - not sure if DH can get home easily tonight. I am ready for some football! I am not ready for the pre-season hot and sticky games though! I am sure I will go with my friend that you met, and am hopeful that the Bucs improve over recent history - we shall see, right? Keep us posted on what the scan shows, I am sure this is precautionary but better not to be left wondering.
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just scheduled a brain mri for myself next Thursday all I had to do was ask for one and my mo simply said ok then I will be getting a pet scan aug 26 after I finish chemo not fun month at least I look forward to being done with chemo and my mini celebrating vacay to traverse city!!
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I asked my chemo doc and cardiologist today about slower infusion of my herceptin / perjeta today at Sloan Kettering. They said research showed no benefit. I the infusion went well. I have 4 more to go as long as my heart function doesn't decrease too much more. Love, Jean
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Linda, Its good to see you around again. Headaches do seem to be a common se of Arimidex, so hoping that's all it is.
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I have had a mild headache off on these past few days. Did not know arimadex could cause this, I will be noting if this is a more regular thing. My MO said there was no benefit of having a longer infusion of herceptin. Will they ever admit certain side effects with these toxic drugs?
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Jerseygirl,
I was advised by a doctor herself a bc patientwho's been there that 90 minutes would be easier for me so that's what I asked for. They told me when you come in, it's your chair for as long as you want it you want 90 minutes you got 90 minutes
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I wanted to avoid problems and asked my MO for 90 minute Herceptin infusions. He said it was his job to see that treatment disrupted my life as little as possible, so he had me do the 30 minutes. In the end, I didn't have any problem with it.
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My doctor and nurses at the cancer center both advised me that I could do 30, 60 or 90 minute infusions and also said the some had issues with shorter infusions so they advised me to do 90 at first and try a faster one to see. I ended up at 60 and stayed there. I wouldn't ask on this issue. They are charging the insurance company the same amount no matter how long they run it over and if you are having issues then they should try a longer infusion to help with those issues. If they still say no - then I would threaten to move my business elsewhere. They make big money on these infusions.
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The dosing instructions advise that Herceptin should be infused over 90 minutes for the loading dose, and from 30-90 minutes for a 21 day dose thereafter. I am willing to bet there have been no studies to assess whether the faster infusion time has side effects, other than cardiac, and that is why the docs say there is no study info to support that slower infusion times lessens other SEs. I had all my infusions that accompanied chemo at 90 minutes, and my first Herceptin only done at 30 mins. Horrible bone/joint pain where I had none previously. Slowed back to 90 minutes with no push back from anyone - all I had to do was ask, I elected to go in later in the afternoon so it was less crowded so I would be assured of an empty seat for that longer period. Infused over 90 minutes and had zero pain. Anecdotal, yes - but I have seen it too many times on this site to think I am the only one, and tonlee's post above re the irreversible cardiac damage with a fast infusion time should be a cautionary tale.
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I had my herceptin over 90 minutes, but there were a few times that they timed it wrong and it was shorter by 15-20 minutes and on those days I always ended up with headaches and aches all over. I can't even imagine how awful I would have felt at 30 minutes
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My MO and cardiologist have both said there isn't anything that shows shorter infusion times affect heart function. But we are all different. It certainly doesn't hurt to ask for a longer infusion time. Maybe it will help. If not, all you did was spend an extra hour with your friendly nurses. My Herceptin only infusion has always been 30 minutes. I've never had any side effects from it. Well, as far as my MO and cardiologist is concerned. I did have a decrease in heart function that delayed my treatment by two weeks but it went back up. And the heart function only dropped to 52 which isn't critical. Thankfully it's back up to 60. Only two more Herceptin treatments to go!!!
Edited to add about Tonlee's post. I didn't realize her infusions were as quick as 20 mins. That seems really quick. Mine are usually about 32-35 minutes
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Has anyone here had to stop Taxol early, prior to completing the 12 doses, due to adverse affects? I developed a terrible rash as well as neuropathy in my legs- not just numbness and tingling, but weakness and a clumsy gait. After the 8th Taxol, they held it for 2 weeks. The rash subsided and the neuropathy lessened. I received the 9th dose and after 5 days the neuropathy returned more significantly. They held my Taxol again last week and my MO said they will likely stop but will make a final decision this week. I am worried about only receiving 9, but also fearful of worsening or permanent neuropathy.
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kerry,
my MO told me at the start that if I couldn't complete all 12 because of seriously bad neuropathy etc if I got to 9 he thought that would be enough considering my tumor was small (7mm) and no nodes. He actually said that shorter herceptin courses for smaller tumors (1 cm or less ) might be investigated in future as being just as effective but they don't have that info now. There are trials being done in europe, I think and a breast cancer oncologist friend of mine in Tokyo says the Japanese are looking into the possibility of herceptin alone for small tumors though current thinking and evidence shows hercpetin works best accompanied by some form of chemo
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Thank you, that is encouraging to hear. I know they try to get as far as they can. I am thankful that my MO is cautious about giving Taxol through neuropathy. It is so difficult to know how to measure neuropathy- it's not like looking at the numbers on the liver enzymes or the ejection fraction...there are no numbers here. I try to ask myself, is this something I can live with forever and even though it can fluctuate from day to day- the pain and weakness is pretty significant and would most definitely impair my quality of life and impair my activity.
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I think in 10 years when they can do long term studies on the duration of Herceptin and the heart, there will be enough evidence to suggest slowing infusions to 60-90 minutes well worth the time in potential prevention alone.
Until then, the earth is still flat. And all we have is "anecdotal evidence."
But just to show how much medical opinions can change in a short period of time....My second opinions were all civilians. The general consensus seemed to be at the time that cold caps were for "crazy people" and the peas I used on my fingers...well, it was pretty much a joke of rolling eyes and lifted brows.
Guess what is pretty much standard care now? hahah. (Well, not where I was treated, but in a lot of civilian hospitals in my area.)
I still wouldn't do the cold caps, even today with the option. I think it's a personal choice and support the women who do choose them, and will help in anyway I might. Even if it's just going with the cooler! I didn't like being bald, but I LOVED having short hair. Super short hair anyway.
WHOA, that's a serious diversion of topic.
Anyway, I think one of the biggest lessons I learned from the whole BC thing is...with a little time, science actually tends to catch up with the experts (us!)...buwhahahah.
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My cardiologist talked to me about all the women having cardiac issues after chemo. His preference is to put women on heart medications prior to certain chemo and Herceptin treatments. They will help to protect the heart. He said there are going to be some changes to way things are done now.
My first MOs office looked at me funny when I asked about icing my fingers and toes. They also dismissed my question about taking Claritin after neulasta and getting the shot in my belly instead of arm. I never did any icing but I did take Claritin and got my shot in the belly with no bone pain at all. It was an expert here that gave me those tips!
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TonLee, so nice to see you here, with your crazy laughter!
I was asked to see a neurologist when I complained of pain in my feet. I found it interesting that he asked me how my hearing was. When I asked him why, he said where there's a nerve, you can get neuropathy! I never thought about it like that before. Hmmmn.
Hey, SulaDog!
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Nice to see you too Tomboy.
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My herceptin infusions were an hour but I think I should have had 90 minutes. Herceptin alone did affect me, particularly where my energy was concerned. Ladies, don't ASK for a 90 minute infusion, TELL them you will have a 90 minute infusion. If they don't go for it, I would get a different oncologist. Its such a simple, small thing to change but the effects can be big.
TonLee, great to see you here.
Liz
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Tomboy - I still have constant ringing in my ears and feel like I do not her as well. Never thought that it was the nerves.
MM and Husband and all 1st round TCHP. #1 - I had a complete response and NO cancer was left in my breast when I had my double mastectomy. Check to see if you got more chemo on the first round. Can't remember which, but I got 1.5 times the amount of some if not all on the first round and it WAS the hardest on me. The rest were not a piece of cake, but after the first round, I would have stopped chemo if I didn't have 3 children in elementary school. Also, tell the MO about everything and get stuff. I had protonix and carafate when needed for acid. Lomotil for diarrhea, none of the anti nausea's truly worked, but I had a bunch. Do not let yourself get constipated, drink hot prune juice, drink Magnesium Citrate (YUCK), but get 'going' as soon after as you can. I found that being so clogged made it worse than childbirth when the diarrhea hit, and the rounds that I had the constipation under control, were the easiest. Also, people will tell you it gets harder each time, I didn't really see that until the 4th or 5th, and it wasn't the first 10 days of symptoms, it was general fatigue. The last one was hard too, but not as hard as the first. If you have made it past that, your life will be easier.
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tomboy,
Here you are!! I was looking for you over in Crazy Town!!
Momma,
I only iced my head not hands or feet , I didn't get neuropathy , I was also taking 3 tsp of L Glutamine twice a day, starting before I started chemo, all 12 weeks of chemo and then for a month or so after I finished.
Tonlee,
The cold caps were a totally new thing for me. My MO at UCSF suggested them and I was very skeptical about how well they'd work if they were safe etc...25 yrs ago when I had chemo the last time there were no cold caps and like you I absolutely LOVED my super short hair after. I liked it do much I keep it short until last year when Indecided to grow it out again. The only other time I did that was right before I was diagnosed the first time back in 1990.... Wouldn't ya know it as soon as my hair was long...cancer again so this time I decided I was going to keep what I'd been growing!
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Good morning. Wondering if anyone has had issues with minor nose bleeds? Twice yesterday I was just sitting and a trickle of blood came out of my nose. Nothing else I wiped it away and it was over.
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greta - nosebleeds are common and happen for a couple of reasons - chemo causes soft tissue irritation and causes your platelet count(clotting factor in your blood) to drop - those two combined equal nosebleeds. Be careful if or when you blow your nose, or if you can't get the bleeding to stop. Keep the inside of your nose moisturized - I used Aquaphor on a q-tip, put it up your nostril and then pinch your nose to spread the Aquaphor around.
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I have tinnitus too. It all started in December with one of the drugs I'm taking. I feel it was probably caused by Taxotere but wasn't that noticeable. This new drug made it worse. My left ear is worse and I feel I might have some hearing loss because of it. I also find that certain foods (like cheese) can make it worse
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thanks SpecialK. Will give it a try. My sinuses have been very dry. Will pay attention to my lab results!
Lago the chemo my daughter was on caused her some temporary hearing loss but not tinnitus. I don't know the name of hers. Didn't cause hair loss though. She had adenocarcinoma vaginal wall.
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Suladog, it sounds like it is dangerous for you to have long hair!
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Tomboy,
oh yeah, no kidding. I was really tempted to cut it off.. I'm such a superstitious Italian
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Kerryd423 - I only had 9/12 Taxol. My dx is in my signature. Neuropathy was the reason. I had to do stairs on my butt to be safe. I did treatment 1-6 skipped 7&8, did 9, skipped 10, did 11&12. My MO felt 9 was good enough.
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Tamoxifen and I are on a 2 week break.
WARNING LONG RANT...
I just got home from an appt with my MO. I have been taking Tamoxifen since May of 2014. I have gained 45 lbs since being on it. My bones and joints are killing me, I have non-alcoholic fatty liver, borderline diabetes. I take pain meds night and day. I also am having short term memory loss, no ability to focus/concentrate and recently began having panic attacks, and tinnitus.My RO says all is from the monster pill. As of today, I am on a 2 week vacation to see if symptoms improve. I have been trying to go off Effexor, ended up in the ER with vertigo like symptoms, I have been able to decrease the dose by half. If I miss a dose, however, within a couple hours the vertigo symptoms appear. Edited to add insomnia and other sleep issues are also occurring with tamoxifen.
Edited again to add I was Stage 3, grade 3, Triple positive. So will need to figure something out because MO is not comfortable with my wanting to stop. He mostly refers to the 9 lymph nodes that were involved and the fact that they were extranodal. Not to mention the lymph vascular invasion. SUCKS.
Edited to add: foggy brain is causing all these stinking edits. Depending on the vacay results, I may be removing my ovaries. I told my MO that I really feel like my body is fighting to stay out of menopause. I cycled all through my chemo. He said that is very possible. with removal of ovaries an AI would be next. All the new studies suggest that is better for lobular anyway
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Robin, we are in the exact same boat, and it does suck. I think we are a couple of the people that our bodies REALLY don't like what lago has called the ESRs', (estrogen-sucking-drugs), and really, I am with you, I have hated them for a long time now. It has only been in the last 6 months that I feel somewhat better. Like, I had been given a fitbit for Christmas last year. I was shocked to find out that I could only do about 2000 steps, and that was it- my energy was done. But I liked to see if I could do more than the previous day, and am happy to tell you that I get my 10,000 steps in early in the day now, altho I don't check anymore to see by how much. I'm too busy! I just think there are some of us, that tamox and A.I.'s hit harder. It does get better, but I still hate them... and you can see, I can't stop either. Many women that are stage 4 had less nodes involved than me. my bs had said to me that my cancel "had legs". sux.
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