ER-, PR-, Her2+ Roll call
Comments
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cmaxhaney, I also just finished AC #4. Starting Taxol and Herceptin NEXT Thursday. We're in this together! I'm hoping to feel better than I do now.0
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It DOES get better, just takes time and patience (which I have never had a lot of!). I am still on herceptin until January.
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RochelleAnderson - Sorry to hear about the new diagnosis. It sounds like you will probably be starting chemotherapy. You might want to compare notes with GraceAnn. Her post is just below yours and her diagnosis was similar to yours at the start.
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Welcome all the new women here - so sorry you have joined our club, but this site is full of information and wonderful support. Grace - what an inspirational story you have! Wishing you many, many years of clear scans.
I did TCH 3 years ago and am doing great. I am continually amazed by all of the new trials and drugs for Her2+ that I see here.
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My friend and I before a parade and we were riding a pink jd tractor she has done up for bc awareness in honor of me.
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Dear gals
Did you hear about Affitoxin? I Googled it and there was alot of inspiring facts about that. I hope it'll come to market so fast so all of you including my mom can use it.
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Hi everyone, I am back from the oncology doctor. I will have my port fitted on Friday, in my arm, as the wait was too long for a chest port. He wants to start chemo on Wednesday. Taxol/Carboplatin/Herceptin, every 3 weeks.
So any advice at this point woulod be appreciated. Thanks.
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I just finished 4 AC treatments and am starting Taxol/Herceptin next week. What should I expect. I'm still tired, weak, and have horrible heartburn from last Thursday's AC. Not looking forward to anymore torture!
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Southamptonmom - Glad to hear you finished you A/C. Taxol/Hercepin isn't nearly as bad as A/C. You might want to make sure you have a good sleeping pill on hand. The premed Decadron that they give you to reduce the risk of an allergic reaction can give you quite the energy boost and make it difficult to sleep for the first couple of days after an infusion. The other thing I've heard, but didn't try was to bring baggies of ice for your hands and feet to reduces any possible neuropathy and nail loss. Thankfully I was lucky in that I didn't have anything but mild neuropathy symptoms and my nails did lift a bit but didn't completely loose them. Good luck and best wishes!
ETA: I almost forgot, make sure to take calcium supplements also. The Decadron will cause you to loose calcium while you are on it. I didn't find this out until after and it caused some mild to moderate bone degeneration in my joints. So now I'm trying to reverse the damage with Vit D and Calcium.
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HollyinMi, Thank you. I am day 8 post AC#4 and still nauseaous. I am hoping no more nausea on the T/H. I've slept so much these past 8 weeks that my muscles and joints are screaming at me. Did you go for a DEXA scan? I asked my SO how often should I go for a PET/Bone scan, and she said only when I have symptoms, but I should have a DEXA but never got a script. I take calcium with D, and am going to double it. Did you take extra B vitamins and L-Glutamine?
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I'm only 34 so I guess my MO didn't think a Dexa was necessary. I wish he had. I didn't find out about the bone degeneration until I had a bone scan a few weeks ago because of lower back pain I've been having. No mets, but I no longer have the joints of a 34 year old either, lol. I did take extra B vitamins during my Taxol/Herceptin but not L-Glutamine. Hope you can get over the nausea soon! Thankfully, you shouldn't have any nausea with the T/H if anything your appetite should pick up.
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HollyinMich - I did not know about the Decadron and bone degeneration! I'm having a horrible time with my joints aching. Never even occurred to me....I'm going to start on multi-vitamins, L-Glute, Vit D and Calcium right away and see if it makes a difference. My MO and RO told me not vitamins or supplements at all through chemo and rads and to be honest, I haven't thought to get them started up yet.
Thank you!
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Marjie - I hadn't realised it either and my MO wasn't too keen on me taking supplements either during chemo. I read an article that mentioned that Decadron causes your bones to break down during tx and talked to my primary doc about it and he confirmed that it does. I had been going round and round with my MO about the joint pain and it being from chemo and he kept telling me no not from the chemo. So I did a bit of digging on it and technically it's not from the chemo but the premed, so he was kinda right. I don't see my MO again until the 19th and I plan on clueing him in on this little discovery, lol.
The article is here for anyone interested.
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Grimbol - I am just finishing round 2 of TCH. You and I will be pretty close. I think of next week (start of round 3) as 1/2 way throught the chemo and on my way to mastectomy. I am planning for a double in early November - God willing and no hiccups along the way.
This is the advice I received from the dietician and the naturopath who work with our oncology office (a rare set up)
Supplements - 1500mg calcium per day, Vitamin D3 2000 IU daily (keep your bones strong). L- Glutamine (a tasteless white powder available at most health food/supplement stores) 10grams daily mixed in juice, water, or milk to keep away the neuropathy. Magnesium 250mg daily to help the bones also.
Good multivitamin daily. A good omega 3 supplement twice daily
B complex daily (in addition to the multivitamin to help your nerves)
Food - limit carbohydrates, eat lots of "good fats" - 3 tablespoons of Extra Virgin olive oil a day, nuts, avocado, etc.
Get approximately 80 grams of protein per day. (I eat Omega 3 eggs, mozarella and feta cheeses, a vegetable based protein drink, and lots of walnuts, almonds, and pecans)
See the book "The Pink Ribbon Diet" or information on the Mediterranean diet for more info.
I recommend the website lotsahelpinghands.com to set up a calendar if people want to do things for you, or bring you food.
I also take two generic zyrtec the morning of my chemo to keep down the histamine reaction to chemo.
I asked to start a beta blocker (metoprolol) in hopes that it would reduce my risk of heart problems from the herceptin. My oncologist agreed. I take 50mg long acting. There is a trial on this right now.
Get some "Nuun" or similar low sugar rehydration tablets and drink one of these a day - get a total of 2 Liters of water minimum per day.
I hope that helps! Stay in touch.
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Thank you so much, I was just sitting here thinking I must find a list of what I should be doing, and hey you've done it for me,
I do have gluten intolerance - Celiac disease, so I don't eat too many carbs, apart from sugar, anyway. The next few days are full of appointments, port, echo, PET scan, mammo on the left side as no-one bothered to check that yet!! At least I wont have time to think about it all. Oh yes and wig shopping, my kids want me to get a wig! How soon does your hair start to fall out? I plan to have it cut short first.0 -
Deep2deep - Awesome information...hope you don't mind I cut & paste your post onto my desktop for future reference!!
Grimbol - It's such a busy time isn't it. Depending on your chemo, your hair will likely start coming out around day 14 or so but remember everyone is different. Same as you, I cut my hair short first (before surgery). Once I had cut it, I went out wig shopping with my daughter and bought a wig that I only ever wore once. My son hated it and would ask me to take it off any time I thought about wearing it, LOL. If I remember correctly it was around day 17 that I had my DH buzz my head - your scalp does get kind of uncomfortable - and my hair was actually shedding into my morning coffee. It was time and it felt good to have it gone.
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Thanks for the info. I am just back from having my port inserted. Can't believe how bummed I am today!! I suppose it just makes it more real. I have a grandbaby 9 weeks old and another one due imminently, day or two at most. I won't be able to hold either of them for the next week, bummed about that too, then I feel bad for whining when I'm really not that bad. Actually my arm is really achy and uncomfortable, the doc said it should be fine!! huh. ok enuff pity party, my lovely hubby is making me lunch. Don't want it but I told him to make me eat.
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Grimbol - do you have a port or a picc line? It's only natural to feel a bit sorry for yourself through this but don't let it get the best of you! We are all here for you to whine at, no worries 0
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Hi Marjie, it's called a BARD Power Port. Thanks for listening, I feel a lot better today. My arm isn't so sore and achy today either and I guess I'll get used to it.
Sorry for whining I'm not really a whiner, so tell me to knock it off if I get too bad!!0 -
I had a few whiney days when I got my port in...it's in my chest and I felt like I had been kicked by a horse for a few days LOL. But what do we do....we get back up, we suck it up, get our sh!t together and just keep going!!
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Grimbol: I had the BARD Power Port also, and it worked great all through chemo and Herceptin. The onc's staff used it to draw blood, and I always tried to schedule a scan when someone who could access the port was working. I even had an ex-chemo nurse use it during my colonoscopy. Today I just have a very thin, white scar - I know it's hard to think about making it through all of this and being finished, but it will happen! You're going to be just fine - and do NOT ever worry about whining here.
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Thanks guys,
my port is doing better, grea bruising but not so sore and achy. My gripe today,
I am having a PET w CT scan and I have just found out, no-one tells you these things, that I have to drink Barium for it!!! I HATE barium. The last time I had to do that I decided that was it, never again, they'd have to find another way to see whatever it was they were looking for, but that was before BC, so I guess today I just have to suck it up and drink!!Tomorrow is chemo, I'll try to not complain about that!
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Complain away! I agree...that Barium is gross and trying to disguise it with orange flavouring is even worse. Blech!
Glad your port is feeling better - you'll be thankful for it, believe me! I'm so happy I have mine as I was starting to develop a needle phobia by the time they finally put it in.....they always had to poke and dig for veins, ugh.
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Yay, no barium!! don't know why but I didn't question it!
Chemo today, bit scary - no ok a lot scary, but after reading from all you I'll be fine. I'll check in again later.
Hope you alll have a great day.
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Hi, I am done with 6 TCH and currently getting radiation.
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Ok, just Herceptin today, chemo tomorrow apparently, another night to stress!!
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Grimbol - Don't stress, you can't do anything about it, so enjoy your night! Tomorrow will be done with before you know it. I'll be thinking of you.
I had my herceptin today too and although it usually makes me tired and achy, this time I think they may have slipped some 'roids in too, LOL. I haven't sat down all day and am tackling some pretty big projects that I've been putting off (like cleaning the basement and shampooing old furniture!!). Watch for me posting tomorrow - I'll probably be regretting this!!
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Got the chemo today, Taxol and Carboplatin, is that now referred to as TC? For now apart from tired I am doing ok. They didn't offer me anything to bring home or suggestions of what to use for nausea, hmm, should have asked. I have to go in tomorrwo for the shot so I will ask then. I am doing ok waves of nausea flit thru but haven't hung around yet, phew!
My port is soooo much better tonight, except that ever since tx yesterday part of my arm is numb, port down to my hand! weird. What is the numbing medicine I am reading about for ports? I'm not sure of the context so it may not be relevant. Oh yes, and i'm realy not sure that I got steroids at all?
Thanks again for the help and encouragement.
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Hi Grimbol - Do you have anti-nausea drugs? Take them - stay on top of it. I also did Taxol/Carboplatin/Herceptin, and I only had one bad night - puking and diarrhea - but the rest of my family also felt crappy, so I think it was a virus that just really hit me hard. A lot of veterans here recommend taking Claritin to help with the bone pain from the Neulasta shot - ask the nurse when you get your shot tomorrow. My onc nurse used to spray my port with numbing medicine before she accessed it - after awhile, I just skipped it because it really didn't bother me, but some people liked it.
One down!!! See, you can do this!
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Hi ladies! I had Taxol and Herceptin #1 of 12 yesterday. It was a lOOOOOOOONG day. 10 hours at Fox chase Cancer Center. My eye lids are swollen, and this morning I already have eyebrow hair falling out. I'm not nauseous, but have been regurgitating into my mouth all night. Yuck. I fell right to sleep last night, but woke up at 3 am. I couldn't reach the sleeping pills, and had no energy to get them. I'll move them to the night stand today! After reading the information Marje posted earlier, I forgot to ask about a DEXA scan for bone density. I doubled my calcium. I talked to my MO about supplements. She told me a good multivitamin and calcium is great, but avoid the omega 3s as they may cause tumor growth buy protecting the cancer cells. I strarted the L-Glutamine, B-Complex, and B-12. No icing though. She said it doesn't work, and can cause nerve damage. No more Neulasta. My WBCs were 5.7 RBC 2.8, Hgb 10.3 (started at 15), So now I know why I'm so tired.
So I am awake, and not feeling so bad. What should I expect the next couple days? Can I get back to exercising or will it hit me the next day or so???
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