Taxotere, Carboplatin and Herceptin
Comments
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Yaya, thank you. I am disappointed too. I so wanted to finish on time! Good luck on Monday.
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Hi Ton Lee thanks for the info, I take L Carnitine and did so throughout chemo which would explain why my EF was better after chemo than before. I was always baffled by that. I thought they acetyl and regular were the same! I still have some muscle but no tone.
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I knew they were different that's why I was and still taking Acetyl-L-Carnitine for neuropathy. Too bad they aren't the same because the L Carnitine is cheaper.
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Hello to the group....Hey Grimbol...I'm in Palmdale...just wanted to say hello....I'm having my fifth chemo next Friday and wanted to ask if anyone else is going through the cranky phase. I don't want to talk to anyone but family and I want to just be left alone. My fiance and I had a blow out because I cancelled our wedding because I knew I wouldn't be well enough three weeks after surgery to get married, plus I just didn't want to deal with planning. I have all sorts of SE's and just want to go to work and go home. Please tell me I'm normal and not losing my mind....
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imara - I felt the same way. I really only liked to email, didn't even like talking on the phone during chemo. (((hugs)))0
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imara56 by my 5th chemo I really started to lose my patience with all the SE. Last thing I would have wanted to do was plan a wedding… and ask the folks here if they remember me back then. I was a pretty good sport through most of it. 2 weeks after my 6th/last tx I turned 50. We went out to dinner but I didn't enjoy it. I still felt like crap.
But It does get better. You eventually become yourself again granted my fingernails still haven't got their sh*t all together yet but it could be worse.
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Hi Imara56 TOTALLY NORMAL. It must be tough for you I totally get not wanting to co mingle chemo/cancer with such a happy and important day . Lago is right over time you resume your normal self. For me it was 4 weeks PFC before I saw myself and 8 weeks before I felt like myself, still working on the out of survival mode but almost there. Good luck & hugs to you
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Omaz,
Thanks for the link, very informative.
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Amelie,
I had a transfusion after # 4. It was not terribly bad, just sitting in a chair for 4 hours, but we are kind of used to that with infusions. I felt better after a couple of days, but my levels have not come back. I am still severely anemic, but they are going to let me wait it out now, since I finished with tax and carbo. I am hoping to be okay by Thanksgiving. My surgery is the week after and I am hoping to be stronger.
I dont' think I mentioned that I have decided on just having a lumpectomy. After talking to several doctors, I decided my body has been beaten up and a more invasive unneccesary surgery might not be good at this point. There is a chance they will find microscopic cells when they do a biopsy on the tissue they remove, but I am aware of it and would go back for a bilateral within days of the lumpectomy. I am praying that won't be the case. I will have a sentinel biopsy and the surgeon is planning on removing at least one node, although there is no evidence of involvement.
Thanks to all for the support.
Amelie, hang in there. You will be okay!
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Omaz, Thanks for the link..though I think it downplays the benefits...though does say ..
Fatigue resulting from chemotherapy, radiation treatment, and poor nutritional status is common in cancer patients [23]. They may also be deficient in carnitine [23]. In one study, treatment with carnitine supplements (4 grams/day for one week) ameliorated fatigue in most chemotherapy-treated subjects and restored normal blood levels of carnitine [24]. In another trial, terminal cancer patients supplemented with carnitine (doses ranged from 250 milligrams to 3 grams/day) experienced less fatigue and improved mood and quality of sleep [23]. In both studies, most subjects were carnitine deficient before taking the supplements.
My Onc never even suggested testing my carn. level. Probably woulda saved me some problems.
I pay about $40 for a bottle of liquid L-Carn. (I can usually get a buy one get one half off, or use a 50% coupon.)
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I tried acetly-cartnitine and it made me really nauseous. The onc suggested B6 and B12 and that seems to have resolved the beginnings of nueropathy on my feet. The soles of my feet are very tender, but the tingling is gone since I started with vitamin B.
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TonLee - I think since it's an NIH site (gov) they have to be conservative! I was happy to see that they had such a site though - forward thinking!0
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Hi imara, where do you go for tx, somewhere up in Palmdale? I get my 5th the following week. I so uderstand how you feel, I need to be left alone for at least the first week after tx, no phone calls nothing. You'll nejoy everything more once this is past too.
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Good Morning Grimbol, I drive out to the Sunset Kaiser in Hollywood. Lancaster is so not the place for cancer treatment. They are wonderful at Sunset. I'm so glad I'm not going crazy. I feel so guilty but I just don't have the energy to deal with anyone right now. I sure hope I will be back to my self after my last chemo right before Thanksgiving. Thank you everyone for your comments.
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I am fortunate, I go to the Providence Holy Cross Center inside the new Facey/Holy Cross building here in Santa Clarita, About 10 mins from where I live, so it's nice and easy for the nasty Neulasta shot and hydration etc. too.
So, imara, if you are with Kaiser are you getting 6 tx or only 4? I have a friend who went thru this a couple of years ago and only had 4 tx before radiation. Difference of opinion in oncs I guess.
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Grimbol, you are so fortunate to be close to home. I have to do five days of Neupogen two days after my chemo and I go to the Lancaster facility after work. I will have six tx of chemo and one year of Herceptin. I just had my second MRI and MUGA scan last week so hopefully the chemo is working. We seem to be on the same tx schedule. I am praying for all of us.
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Hey ladies I went to the Vitamin shop today looking for more L Carnitine and COq10 and I found a combo of both in liquid form! A large bottle was 25.00 but you only need 2 teaspoon per dosage.
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Eyelashes, eyebrows and hair.
I know others have said they lost their eyelashes after treatment. How long does it take for them to come back? I had my last treatment this week and my eyelashes are gone. Half of one of my eyebrows is gone also.
I have gray hair coming in sparsely on my head. It is only in spots. Has anyone else had that? Wierd!
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Anafoefana I think it varies depending on your individual growth cycle but for me: my eyelashes fell out very rapidly and completely around 5 weeks PFC and then seemed to start growing back in steadily and have made a nice recovery. I never completely lost my eyebrows-they had thinned throughout chemo and then I lost sections of them around the same time the eyelashes went. Even now my eyebrows seem to be stuck at that point-I'm not losing anymore but they aren't growing either and I'm almost 5 months PFC-I still have to fill them in a little bit (but I don't have to pluck them much at all:)
I had really weird gray hairs on my head initially too but they were very coarse and weren't very "rooted" if that makes sense-I think they were strange leftovers from chemo. I was afraid I was turning gray at 42! I ended up shaving all that weird stuff off 2 weeks PFC to start with new growth and the new hair came in evenly without those gray ones:)
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Anafoefana Top of my head came in slowly especially on crown but it does come back. Eyebrows I think started to come in a few weeks later after they fell out but I was never without eyebrows. Lashes were much slower. I will say this, since my last Hercepin was Sept 6th I have now noticed my hair is growing a lot faster. My lashes and brows have thinned but seem to be coming back in again. My onc says this is typical. It can take a while for things to get back to normal.0
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Hi Everyone,
back from MD Anderson. Has anyone heard of the Bolero 3 clinical trial?0 -
Dragonfly,
You have described my white hairs, very coarse and as you said, no real roots. I have plucked a few of them and they come right out. They are very wierd and I think I will shave them before too long.
The eyelash thing is wierd also, they are only gone in the middle of my eye, the sides are still there and only one eyebrow seems affected.
Lago, when my hair fell out the top fell first and then the sides. It makes sense that might be the way it grows back.
Tiger_blood, I hope all went well for you at MD Anderson. I have not heard of that clinical trial. Are you going to participate? Sending you best wishes!
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NMoss, that's awesome! We have a vitamin Shoppe here...is that the same thing?
I don't usually go there because the people are snoooooooooty and I don't reward that with my money. lol But if you found both liquids for $25,.,,,I'm so in!
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Keep your eye open at the Vitamin Shoppe. I just purchased a bunch of stuff on special. Their brand buy one get the other 1/2 off. In April it's buy one get one free. I stock up if the expiration dates work.
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Nmoss Is this the right thing? I found it on the Vitamin Shoppe website for $25.99. Orange flavor? Yummm:)
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They seem to have it on amazon too for about $18 for 16oz.
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Hi ladies that is the stuff! Good going dragonfly, it doesn't taste to bad either. Just curious any of you experience heavy fatigue out of nowhere? I was fine until about 10 days ago, I had Herceptin and recon surgery in the same week about 2.5 weeks ago but It also was a SE of mine for BC, I am a little worried, because I felt the exact same way prior to diagnosis and my onc is just saying I need to take it easy. This isn't sleepy exhaustion is flat out no energy, BTW I went to a LE specialist who said I didn't have LE but gave me a LE massage anyway and the stiff fingers and shoulder pain were on right non cancerous side has now started on my left side. Anyone hear of this? Can massage make it worse? Thanks, I am scarring the crap out of myself, but I can never take it for granted that nothing is nothing anymore. Thanks
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Thanks Lago...that's good to know.
Dragon!
I'm loving that liquid! Ordering some tonight!! The stuff I have now is lemon and I take it first thing in the morning with my thyroid meds. It's not the best taste first thing in the morning! lol
NMoss...
I felt that way when my heart started to poop out. When is your next heart check-up? Exhaustion and weakness was my first clue.
I also have shoulder pain. I FINALLY figured it out. It's on the port side and a lead from the port goes over the clavicle and into my neck. Whenever I wear a real bra (not a sports) the strap rubs that lead on the clavicle and I feel "Zaps" down my arm and up into my neck. The next day I have so much pain I can't lift my arm!
Just as an experiment, last night I ran my finger along the clavicle at that lead and "zapped" my arm off and on for 20 minutes just like a switch. Today my arm shoulder and neck are sore per usual.
Looks like it is a nerve issue and will continue until the stupid port is taken out. I'm glad I got the port but I am so ready to get it out!!
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Thank goodness, I thought it was the port. But since recon it has gotten worse. My next Muga is in 2 weeks, my last EF was in mid 70's 2 months ago. I agree , I cannot wait to get the port out.
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