TRIPLE POSITIVE GROUP
Comments
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Well I didn't win. True to form, I didn't even pick a SINGLE number...buwhahaha. So that bad luck held out.
On the other hand, the good luck is, I'm still on the green side of the grass!
LeeA,
I didn't think they'd start Herceptin without chemo? Is that what your saying?
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Good morning -
Yep, TonLee - that's what he said.
I guess he really wants to get the Herceptin going. I'm at 3 weeks and 1 day since surgery.
If the breast surgeon and/or plastic surgeon think it's too soon past surgery to start chemo then he wants to start Herceptin and then add in the taxotere and carboplatin at the next three week appointment - or that's how I took it.
I still have about 45 cc daily per drain so I'm guessing my drains won't be coming out tomorrow.
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lago, do you recall if most people here had the taxotere versus the taxol?
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Lee, most women get taxotere with carboplatin and herceptin. That's what I had last time, and it looks like it is a standard treatment. The taxol with herceptin looks like it is a newer treatment with fewer side effects for most, but I hear the neuropathy can be bad. My doctor might put me on that tomorrow since the taxotere/carboplatin made me so sick. But it looks like most people can tolerate. I must be a wussy metabolizer.
TonLee, I'm shocked you didn't win. With the way yesterday went for you, I thought for sure you'd be sitting on piles of gold right now
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LeeA, my BS removed my drains exactly a week after surgery and they were still draining more than 45cc per day. I guess they also look if the fluid becomes straw-colored and less bloody. I had some swelling after the removal, tho. But this subsided in a few weeks. That was more ok with me than having the drains the entire time.
Pbrain, you can also ask your onc to lower the dose on taxotere. When mine was lowered from 100 to 80 mg, it improved the se's by 50%. This he did after i told him i was thinking of quitting tax. Really a nasty drug my onc says he doesnt like giving it bec of what it does to patients, but they say it does its job, so.. Eat what you can, when you can, sleep when you feel like it, walk when you get the motivation, be sloppy around the house when you're beat, whatever works, make it work. Focus on finishing this any which way it can be done. Im a big water drinker but gatorade tasted better while on tax.0 -
Morning ladies!
I had Taxol in my TCH x 6 cocktail. I think I came through chemo better than expected . I did have some neuropathy but it has largely resolved post treatment.0 -
Just as a reminder...I had one of my last herceptin only infusions done in 30 minutes @ the suggestion of one the infusion nurses. She said....you've obviously handled it well so we can do it faster. Well it was a mistake. I was exhausted And depressed physically and psychologically for some time after. I should never have driven my self home that day but didn't even realize how tired I was!
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I had taxol and handled it just fine for me. The only problem I had was numbing in two fingers on both hands they are slowly going away now and I'm 7 mo out of taxol. Lost one finger nail other than that went through it just fine.
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Ashla,
I got Herceptin, from first drip to last, in 25 minutes. And every single time, later in the afternoon, I'd be so sleepy I'd occasionally take a nap.
I almost never nap. In fact, when I do feel the urge, I know something is really wrong with me.
It was during these fast Herceptin only infusions when I believe the majority of my heart damage occured.
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kayb - that paints a pretty funny mental picture!
It seems with chemo cocktails that Taxol is used with smaller masses sometimes, used with AC-TH, or switched when someone has a lot of trouble with Taxotere. I also had issues with a fast Herceptin only infusion, the first one after having it with chemo. They infused in 30 minutes - I had really bad bone/joint pain - so bad I couldn't sleep because I had to chage position every 15 minutes. I did not have much in the way of bone pain from either Taxotere or Neulasta, so it was quite a surprise. Omaz suggested I ask to receive it more slowly, over the usual 90 minutes - that did the trick. Omaz is the bomb! Further credit is due also because I passed on the Omaz Method of skin treatment during rads to a friend here locally, and her RO said her skin was stellar so they have now adopted it as their routine in his center. I smell a payday for Omaz - you need to find a way to market it as a package!
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oops not sure what happened to my post! anyway hope everyone is well
had a fill yesterday, i feel like these things are just going to burst out of my chest but the good news is the PS feels bad for me so he will only wait 6wks from last fill to exchange yipee!!!!
leeA - that is one tiny bit of cancer...good news
kayb and tonLee LOL - i have so many leftover drugs i swear i could start my own pharmacy. And the "good stuff" like perc's and valium. I have a drawer full of crap from treatment. Before BC I used to have a bottle of tylenol MAYBE and even that was always expired
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LeeA I think most have taxotere but that's because taxol has an even higher risk of worse nueropathy and we usually get 6 rounds instead of 4. I don't know if that is the reason why but it would surprise me. If taxol is given weekly then that risk goes down but most centers don't have that time. I still had nueropathy, still have some in my heel.
Didn't win lottery but at a recruiters this morning. I'm hopeful
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To all you ladies who have been having the vague right side/rib pain - I just got back my CT scan results of the abdomen/pelvis and it was completely clear!!! I think it's just our poor bodies revolting against all the surgery, chemo, rads, meds, stress.... I'm dancing a happy dance right now!!
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Special K said: "I passed on the Omaz Method of skin treatment during rads to a friend here locally, and her RO said her skin was stellar so they have now adopted it as their routine in his center. I smell a payday for Omaz - you need to find a way to market it as a package!"
^^^^^^^^^^^^^^^^^^^^^^^
This is so great! I have screenshots of so many suggestions from all of you but I kind of stalled out on the archives (still on page 145) around Thanksgiving.
I have the Omaz Protocol in my RADS file because I may need to have rads if I don't do the ALND. I already have one tank top but amazed by how hard that particular one is to find at Target™. It's easy to find the gray but I'm going to have to order the black and white online.
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dechi, that's great news!!! I'm wiggling a happy dance for you from my beloved chair.
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lago, good luck at the recruiter's office!
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rozem, you almost used the same words (word for word) that the MO used last night. He put his fingers together and said "that's a teeny bit of cancer." Also, not sure if I mentioned it and don't want to lose this post to go back to the page where I posted but this latest path report showed no sign of LVI.
On another note, how are your tissue expanders doing?? What I noticed about mine (and it's probably normal and I should get off my mental butt and go look at a tissue expander thread to find out) is that my pectoral muscle area is really bulging and has been since surgery. I haven't had any fills yet. Maybe I'll get a fill tomorrow but if I still have these drains I doubt it... Did you have to take pain pills following the fills?
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In the past 24 hours someone brought up medical marijuana to me. I had really never considered it but the person who brought it up used to have a condition that caused a great deal of nausea. I think she still has it but it's lessened over the years. She brought up medical marijuana because I live in a state where I guess it's legal. I don't know - I can't really keep track. The last time we went to Venice Beach there was a dispensary on every block but then I thought there was a big shutdown of some sort. The only problem with medical marijuana (for me) is the Bill Clinton Syndrome™. I can't inhale. Or never learned how to inhale. I guess that's why cigarettes never did anything for me.
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I don't smoke, but was thinking of making brownies!
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lago, PBrain, ashla - thanks for the further clarification on the taxol/taxotere.
bcbarbie, my fluid is kind of a light orange color (not to be TMI-ish). I definitely wouldn't describe it as being straw colored, although that's how the labs always describe my urine color! I've been swingin' these drains since November 7... Maybe I can hang some miniature holiday lights from them.
kayb, thanks for passing that along about your protocol! And I sure am happy the micromet is smaller but it's baffling (to me) how the size could be so different...
TonLee and everyone else who commented on Herceptin infusion times - I recall reading this in older posts and I'm going to ask for them to give it to me sloooooow. I don't know if it could aggravate the MVP but I have more time than anything else so I don't mind sitting there and playing FreeCell or snoozing or whatever...
ang - did you fingernail eventually grow back? Last night I tried on different nail polish colors. The one that goes on the thickest is the Essie brand (that one is deep navy blue). I immediately removed all the colors because wearing nail polish is so foreign to me.
ashla - just switching tabs and rereading - what was the normal time for your herceptin infusion? I know the last one was 30 minutes but was it typically an hour and a half or longer?
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rozem - you felt good enough to have a fill? Excellent news!
LeeA - smoking anything is not good for your lungs. Brownies or cookies would be better...
Jenn0 -
rozem - you felt good enough to have a fill? Excellent news!
LeeA - smoking anything is not good for your lungs. Brownies or cookies would be better... One of my Twitter friends is Xeni Jardin from Boing Boing. She used mm during her chemo earlier this year. She is @xeni on Twitter if you want to chat to her.
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LeeA - the infusion time for Herceptin given during chemo is usually 90 minutes, but sometimes centers like to try to speed it up once it is not being given with chemo. I asked the nurses to slow it down for me after that one fast one produced bone pain, and they had no problem doing so. I think the feeling is that since it is being done without any other agents infusing quickly is OK - but it seems to be an individual thing. Infusing faster than 90 minutes is still fitting protocal according to the dispensing instructions, it is just that some of us have problems with it.
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LeeA...
My first herceptin was 1 and1/2 hour. Most of my herceptin infusions were 1 hour and 15 mins or one hour and I was fine. The half hour one knocked me for a loop.
Back to taxol.....I had taxol every 3 weeks and had some neuropathy that has now virtually resolved. Chemo was not my worst phase of treatment by a long shot.0 -
SpecialK,
When I mentioned slowing Herceptin to the nurses, they poo-pooed it. Said there was no clinical evidence (is there btw? I never checked because it didn't seem like a fighting issue at the time..IF I ONLY KNEW!)....and they didn't have time....NEXT!!!
lol
Really it was a very busy place. Line waiting to get in, and line waiting for my spot when I came out every single time.
Crazy.
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SpecialK, Bren- I'm here and doing better. This last one hit me with nausea pretty bad. Controlled with Ativan and Phenerghan and slept 2-3days away. Coming out the other side of tx #3. Just tired. Slowly getting my energy back. And dealing with chemopause hot/cold. :-/
Shoot! Forgot who asked about the buffs, but yes, I do like them a lot. They don't have seems. The ones I got are lightweight, so I will layer them, one on top of another to mix it up. Or put one over a fleece hat from Target if I'm chilly. Go through Buffwear/Kitshack. Kitshack and Buffwear are the same company, but one is cheaper. I can't remember why, but when I called the lady at US locale, she said why. Meh! I went thru Kitshack.0 -
tonlee - that sucks when you consider that their unwillingness to accomodate your request may have cost you some heart function! My center was crowded, and I always asked if they could spare a chair for 90 minutes, but they always did it for me, even if they thought it made no difference. I tended to go later in the day when it was less busy, but I know you have younger kids which would make that problematic. I can't seem to find any current documented studies regarding infusion speed and side effects either, we seem to be dealing with anecdotal information. I hope that as more early stage ladies are treated with Herceptin and statistics are gathered on SEs they may decide to launch some studies.
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Lee,
I get taxotere also. It hasn't been that bad for me. No nausea, bone pain or fatigue (knock wood, and anything else that works) and only feel badly for a few days after my big treatment. I have the annoying SEs but the TCH regimen is doable. I'm scheduled for treatment # 5 next week, and I hope my luck holds out.
Definately tell the infusion center to administer the herceptin slowly. Mine is done over an hour, and whereas I find myself yawning while I'm there, it isn't too bad. I usually take a nap when I get home, and then I'm ok. But, having said that, I will ask them to do an hour and 15 min next time. Maybe I won't feel tired at all.
I know the drains are annoying (I had 8, and the last ones took a while to come out) but don't be in such a rush to get them out. If they come out, and your body is still producing lots of fluid, (45 cc seems like alot) you might have to be aspirated. Also, once they come out, that area of your body tends to swell until all the fluid is absorbed. It can feel like you are going to explode! So, I agree that they are a pain, but they do serve a purpose.
Good luck!
Btw, you never pm'ed me your email address. I'm going to try and email out the guided imagery mp3s either tonight or over the weekend.
My offer still stands to send those who want mp3s of relaxation techniques and guided imagery for breast surgery, chemo and positive thinking. Just pm me your email address. Its been a crazy week for me, so I haven't had a chance to send them yet.
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My Herceptin was only 30 minutes except the first time even with chemo… which they kept speeding up because I had no issues.
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Well, I was supposed to have my first chemo today. So after 2 hours of sleep last night (thank you steroids!) we schlepped in the cooler full of ice packs and frozen peas, a big bag with blanket, pillow, socks and gloves to wear when while doing the frozen pea thing. Plus my folio with all the Dr folders, i-pad, etc. DH looks around and says "why are we the only ones with all this stuff???" We told the nurses we were moving in!
After doing all the preliminaries (height, weight, BP, etc) we met with the nurse and told her I was still waiting for the results from yesterday's chest x-ray to check on the punctured lung from last weeks port surgery. Immediate red flags! She gets the chest x-ray and the surgical report from the surgeon sent to the MO. By this time we have already been there about an hour and a half and had nothing done. MO finally gets the reports and comes in to see us, explains everything and says he wants to consult with another specialist because the lung is not getting better it has further collapsed - 15% by now. They decide it is not worth the risk of doing a procedure to relieve the pressure between the lung and the chest wall at this time. Still hoping it will resolve on it's own. The MO spent about an hour with us listening to all our concerns and calming us down. So no chemo today, but we were able to go thru all the chemoteach stuff as well as have the baseline echo done. And since I had extra time I was able to stop in the wig shop, pick up my wig and have it shaped a little to take out some of the fullness. 7 exhausting and stressful hours later we were home.
So I get to take the steroids again tonight and go back tomorrow for another chest x-ray. After another consult, Dr's will decide if I will start chemo tomorrow or if they want me to wait 2 weeks to make sure the lung is going to heal. MO just doesn't want me to have chemo, have my white cells go down and have an issue with the lung. I am so glad they seem to want to take a conservative approach and I am fine with waiting another 2 weeks. I would rather go into it healthy.
Have I mentioned that I hate cancer and everything to do with it?
Oh I did find out that the whole tx will be about 4+ hours each time to run all the drugs and premeds thru. Herceptin will take 90 minutes. They like to run the drugs thru slower to try to avoid reactions. They did give me a script for the EMLA cream which I did not have before. I guess they were going to access the port without the cream the first time?
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Bren,
Glad to hear your MO seems to be on top of your situation. Hope it resolves quickly.
Use the emla creme on the port an hour or more before they access it. Be generous with the creme. Then put saram wrap over the area so the creme doesn't stain your blouse. The infusion nurses will wipe it and sterilize the area before they access it. You can also ask for freeze spray, which the nurses spray before they use the port
Between the creme and the spray, accessing the port has never bothered me. One less painful thing in this arduous journey is a good thing.
Good luck!
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Hi ladies. I'm not triple positive, but I think the treatment is the same even for us PR- folks. I have one more taxol + Herceptin , then start Herceptin alone the next week (assuming the echocardiogram is OK). I have been getting Herceptin weekly, at 1/3 the dose I will be getting on the every three weeks schedule. I currently get that lower dose over 1 hour and I can't imagine getting the triple dose over a half hour! But I think that's what they told me. I think I will insist on an hour.
I meet with the radiation oncologist next Monday but won't start rads until January because I will be out of town over the holidays. I have no idea what to expect.
Can someone point me to the " Omaz protocols" for both Herceptin and rads?0 -
pat - as far as Herceptin, Omaz just advised to slow it down to 90 minutes. I had received it over 90 minutes when it was done with chemo, had my first Herceptin only infusin in 30 minutes and had issues. As far as the skin regimen, send her a PM and she will tell you what she did - it is a combination of soap/cream/tank tops - with a schedule, to minimize skim damage.
bren - goop that emla on and stick your Saran Wrap over it at least an hour prior to port accessing, then have them spray the freezy spray like there's no tomorrow - works like a champ.
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