TRIPLE POSITIVE GROUP
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Tonlee, glad to be of assistance!
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Here , here or is it hear, hear ...to this one.....cancer patients are poorly served on the info front regarding nutrition during and after treatment.......
http://www.medpagetoday.com/Columns/TheGuptaGuide/38124?isalert=1&uun=g626901d52R5748108u&utm_source=breaking-news&utm_medium=email&utm_campaign=breaking-news0 -
Just joined this group. Lumpectomy and SNB tomorrow. Knew Id be in for radiation and hormone Rx for 5 years. Met with oncologist this PM for first time and he's confident I am HER2+ also. There went my plan to do rad covertly and be through all this in 6 weeks. Sorry to be joining the group but thank God for all of you. My mind is spinning. Tumor is 8 mm. MRI doesnt show node involvement but SNB will confirm. Even though its a small tumor, looks like I will be getting the works. A lot to digest. Best to everyone.
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Navymom - sorry you have to be here, but welcome. One step at a time. Remember, you are gathering pieces to your puzzle and soon you will have comfort knowing what your treatment path will be. Please let us know what questions you have and how we can help!
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For those of you on the TCH regimen, did any of you have to have a reduced dosage at some point in the course of treatment?
I was so excited about my WBC being 5.4 last Wednesday but today (the day of treatment) it had dropped back down to 2.3 and the oncologist almost had me wait a week for treatment but then decided to decrease my dosage.
The oncology/infusion nurse said that was the best option (as opposed to having an interruption/delay in treatment). She also said I might end up with fewer side effects.
I was really hoping that it was the acupuncture that had helped with the WBC last week but as the oncologist said then (and today) it was the Neulasta at its peak.
The Herceptin dosage stayed the same - just a reduction in Taxotere and Carboplatin.
ETA: Today was the fifth of six treatments.
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vballmom, I love your photo! Great picture!
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Thanks, LeeA. I didn't do TCH, but I have had some bumps along the road of treatment, including skipping four Herceptin treatments. I've learned that finding the right mix is a balancing act - trying to find the most aggressive treatment while doing the least amount of damage. If reducing the dosage will do that for you, then that's what has to happen. During chemo, I also got switched from Neulasta to Neupogen, since the Neulasta wasn't doing it for me.
I spent Saturday night in the ER with a gall bladder attack. After six hours of pain, I agreed to let my hubby take me in. I guess I have a huge gallstone and need to have the gall bladder out. Sigh.
On a positive note, I had my first haircut! I was hesitant to part with even 1/16th of an inch, but my photographer hubby and oncologist did not do a great job styling, if you know what I mean.
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Lee, I had my TC reduced 25% for the last tx. I think mostly due to the ringing in the ears and the fact that I had a reaction during tx 5. I wish I could say that the SE's were less with the reduced dose, but that was not the case.
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vballmom, sorry to hear about your gallbladder issues! I hope the pain has subsided by now. Do you know when you'll have surgery?
And I sure do understand about not wanting to have even a fraction of an inch cut of your hair cut. It looks like you have really good coverage! A woman sitting across from me was about two months out from chemotherapy (not sure what kind but I think she said it was in pill-form and she had lost all her hair). Anyway, her hair looked so thick and healthy and she had excellent coverage.
bren58, I have ear ringing as well but I've never mentioned it to the oncologist because my ears frequently ring. That said, I don't know if they're ringing any more than they typically do. Strangely enough, I don't notice it as much when I go to the Midwest to visit my family.
Ugh, I don't like hearing that about side effects with the reduced dosage. I guess that goes hand in hand with chemotherapy being cumulative. I hope you're starting to feel better as the weeks go by. Have you had your first dose of Herceptin by itself yet?
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LeeA they base chemo on skin surface calculated by using both your height and your weight… but they don't always get it right. Even my onc told me when I reported some neuropathy that if it got bad she would reduce my dose. It's not uncommon. My dose was never reduced, but I do have permanent neuropathy in my left heel/foot. You don't want to get more than your body can handle. Not that my neuropathy is that bad. Most of the time I don't even notice it.
navymominohio You are still in the most scary part. You will feel better once that tumor is out of you. I was pretty concerned about the HER2+ when I was told but they have great shit (Herceptin) for that. Remember right now is your chance to cure. If the cancer spreads outside the breast and nodes to other organs then they just treat to control. HER2+ is something you want to fight now, not later. Good luck tomorrow. It's really not as bad as you think although I didn't get a lump so I don't know exactly what that's like. ♥
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Hi navymominohio....I just scheduled my lump and SN removal...having it April 4th. BS gave me all options mx, bmx or lump. I had the BRCA testing as I am 43.....came back negative...some good news during this process. I have not met with an oncologist...BS said I will after testing of the tumor but she thinks chemo will be recommended.....scares me but one step at a time...so I keep telling myself. Good luck on the up and coming surgery. So excited to get the cancer.
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Thanks to all for sharing. I have been
reading for a few weeks while weighing my options.0 -
Hi, Navymim, Elka.
Sorry you have to be here.
LeeA, I had my tx reduced 25% after my 2 nd tx when I had renal failure. It was a bit better, but the cumulative issues really are there.0 -
LeeA - just to add a different perspective. I didn't have TCH, had FEC x 3 then TH x 3 - at one point during treatment my neutrophils were too low (I was on Neulasta) so they postponed my treatment for a week. The dose wasn't reduced but having that extra week in between treatments seemed to really help me. I know it's early as I am just finished rads and still having Herceptin through to September 13 but, so far, waiting another week didn't seem to hurt my treatment.
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Lee, my worst was #5, my #6 wasn't as bad, meaning not that #5 will be bad for you but that it's not necessarily going to be worse than #4.
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Welcome newbies u'v come to a good place for all u'r concerns, as u can see everyone is knowledgeable and caring so u'r safe here.
Now If course I read all the posts and totally forgot anthing I was going to ask or ad--well adding is unusual for me--I'm always asking. Well I did get a call at 7ayem that I have another bladder infection this time my pee will be brown, I have had so many colors that I have a rainbow coming out of that area. I might have told u already, but that's not why I came here. Oh well--Thanks for all the comments ladies and Lago the answer to the trial stuff.
I hope everyone has a good night sleep. I know it's hard sometimes.
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lago, thanks for that description about the height/weight thing. Some people have been surprised to hear my weight over the years, i.e. when I disclose my weight. My wrists are as big as my husband's (my father, the PE teacher, always said I was a mesomorph and I also have a very thick collarbone). When I lost 25 pounds in the year and a half prior to diagnosis I think I lost a lot of muscle because I wasn't doing any cardio or weight training during dieting. For the first time in my life my legs actually looked skinny versus muscular. Now, I'm walking 30 minutes or more almost every day and my legs are starting to look muscular again. All this started on January 1 - a day before starting chemo. I don't know if muscle mass fits into the chemotherapy scheme of things or not and I don't know the percentage of reduction in the Taxotere/Carboplatin. I wish I had thought to ask!
websister, thanks for giving your perspective on delaying the week. I really thought that was how it was going to turn out.
One of my problems is that I went and scheduled a vacation at the beginning of treatment for not too long after the end of treatment. The doctor didn't use this in his final decision but I've been so schedule-oriented through this that today was just a real surprise. I really walked in there today thinking my WBC was going to be higher - not the lowest it's been on any of the infusion days (other than the first one).
moonflwr, were all of your treatments after number two reduced by 25%? I'm assuming you had six but given the size of your tumor perhaps you were scheduled for just four.
cypher, it's always so good to see you posting! I'm hoping my number four was like your number five but as always, the other shoe is in the wings - waiting to drop gently or not-so-gently.
camillegal, wishing you a good night's sleep as well!
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Lee thank u for the wishes of good sleep, I really thought I'd have it cuz I was out so much of the day and so so tired, but it didn't work as well as I thought. LOL I guess I've learned I can't count on anything in this crazy road trip, but my cat cuddled with me so that was nice,
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LeeA, my TCH dosage was reduced by 15% as well due to severe side effects.
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camillegal "peeing rainbow". Is this in support of same sex marriage that they are discussing in the Supreme court
Reduced chemo dosage: They reduce it because the severe side effects is a signal that you are getting too much, toxic level. They don't want to kill you, just the cancer. Your onc wouldn't not reduce the dose if they thought it would be in-effective. Next time you see your onc write down your questions and ask… and I mean write down. I came in with a list of all my SE and questions every time. If I didn't I would forget to ask.
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So I thought I'd share with my tp sisters that today is my last dose of the big H! Hooray!
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herstrong--- Congratulations---- Happy Dance
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So happy for you, Herstrong!
Hit my halfway point yesterday...darn, I am achy. But of course, we know that Herceptin has no side effects, right?
My legs feel so heavy - like I have lead weights on them.
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Lago: Thanks for the link. I'll order it for him.
Welcome newbies. You'll find such great support and information here and as you can see well beyond the BC.
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Speedy, I did the third option. I started out with TCH and ended up in the hospital. So my MO decided to do weekly taxol with herceptin. He knows his stuff and reassured me that there is 5 year data on this treatment and the survival rates are the same as TCH.
Lago is right though. I ended up with neuropathy so my last three treatments were dose-reduced. They just don't know who will be permanently affected. It is resolving for me (I'm 5 weeks out from the final treatment), but I suspect I might have some permanent damage to the nerves supplying my left hand. I'll wait and see, but currently typing is not easy :-(
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Question for everyone. My MO told me during our first appointment that he could give me a 100% chance of remission and a 96% chance of cure.
How do they know if it is cured vs. just in remission?
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Remission is it might come back, might not. Cure… will never come back. That's my interpretation.
How do they know if remission… If it comes back years later then it would remission for all that time.
How do they know if you're cured. You're NED for about 25 years.
SO basically they don't know
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Herstrong Wonderful news.
Lago that is my whole theory.--NED means right this minute and remission means right this minute.or it can mean forever--same principle
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hi Navymominohio
Sorry you've joined us but welcome. there's a lot of info on this board. Good luck
When I receive my TCH I soak my fingers in ice chips or frozenpeas and cover my toes with an ice pac during the Taxotere . I read that it can help with neuropathy.
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shasha - icing is less for neuropathy and more to ward off the loss and damage to nails. I used systemic treatment to prevent neuropathy - Vit. B-6, L-Glutamine and Acetyl L-Carnitine - and local treatment - icing - for nails.
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Herstrong! WOO HOO!!!!
Welcome Navy mom, I'm in Ohio as well
Elka, glad to see you found us!
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