TRIPLE POSITIVE GROUP
Comments
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Hugs Nicky.
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Sending healing hugs your way, Nicky.
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thank you all! I did sneak off for a few hours this afternoon with a friend to do a food shop. Dont know what I'll be allowed do next week, so I wanted to stock up before I was told not to move!!
It took some time extra to walk round the shop, but at least we now have food 😊
Came home and sat down;
That's me done for the day.
Nicky
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nicky - crappity crap crap! So sorry the issues keep coming for you!
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Hello Everyone,
This is my first post although I have been in chemotherapy for 3 years. Why now? I've been able to manage all previous treatment both emotionally and physically. I'm waiting for the results of a needle biopsy which I should have late tomorrow or Tues. for my third metastisis. Big sigh...All occurrences have been on my mastectomy side. First diagnosis there were 3 in various areas, second in my clavical and now 3 continuous ones which really are one between my clavical and above implant. It might interest you to know that I was in remission for 19 years until the first recurrence.
So, now, I'm entering what I would refer to as the "big league" as far as chemo. I've been on Herceptin for 3 years, in addition to various chemos too numerous to list. Right now it's Tykerb. My question is whether anyone has had similar metastasis and if so, what chemo combos have you been on? My oncologist mentioned Taxotere. I'll have a definite treatment plan once the pathology is finalized which I'm guessing will be Friday to confirm ER+, PR+ and HER2 neu+.
I'm single and don't have much of a support system. I'm starting a part-time job next Monday praying I'll be able to endure whatever side effects may arise. The anticipation of results and what lies ahead is very nerve wracking. It's 1 am EST had better try to get some sleep.
I'd love to hear from anyone who has had a similar diagnosis. My best girlfriend of 32 years passed last year from breast CA and I'm lost without her to talk to.
Thank you for taking the time to read my tale of woe. By the way, I also had Stage I lymphoma 33 years ago which has been in total remission since treatment. Some say I have a very strong constitution. I think this round of treatment will challenge my strength more than ever and don't know how I'm going to deal.
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aw Susan426. That sucks. You are strong to handle all you already have. Sorry you have to do it again. I don't have any information you need. But hugs and welcome.
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I'm worried about c diff. I read about it in an earlier part of this thread. I have had diarrhea, gas, bloating for 3 weeks. It seemed to start with my kids, then me and my husband got it. I thought it was a regular stomach bug but then it never went away. my stool color was dark and smelled like chemicals. now it is a more normal color but I still have diarrhea pretty soon after I eat. I need thoughts/advice/help! I'm scared. I think bc I keep having things crop up even a year after chemo --- UTIs, yeast infection, shingles. I feel like my drs didn't mention that any of these could be a problem so I don't always realize they are happening. And, they chalk it up to, anyone can get UtIs, shingles etc but I KNOW that I got them as a result of treatment. Now I'm worried that I have in fact had/have c diff this whole time and no one has warned me that it is something I should be tested for.
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Susan, sorry you have to be here, but welcome!
I'm also stage IV, but was dx'd only 18 months ago, with mets from the start, so not the same as you. You might want to post on the stage IV threads, there's a lot if ladies who've been there a long time so there's lots of information to share, and support to be had.
Maybe you could update your tx's, then it would be easier to see what tx's you've already had.
I hope your new job goes well, I'm sorry you lost your friend, that's tough. The support here on all the threads is amazing, and I hope it'll help you through treatment as much as it's helping me. You say that this round of treatment will challenge you, but you'll find that once it's in place you'll find a way to deal with it - and we'll all help as much as we can.
Nicky
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Susan I am so sorry u are here, but there is so much info and help here it's surprising how much all the ladies know and find. I hope this is all very doable for u and they get full control over all this. As the day goes on so many more people will be here to help.
Sduch I don't know but 3 weeks sounds like some kind of bug that's going thru u'r household right now. I would think u'r immune system might still be low a little but call u'r Dr. for some meds to see if u can stop this, I know it's awful--when I first started chemo I got it and now I have had it for 6 1/2 yrs. never had c-diff tho but that;s treatable, have had other things and still have my D---so just call and stop it now.
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Hi SusanK, Wow NED for 19 years and now this. That stinks. From what I have read the new drug that was just approved called Kadcyla (super Herceptin) is some powerful stuff. You might ask your onc about that. S/he might be waiting to use that if the Herceptin stops working. Sounds to me if you've been with mets for 3 years and still here fighting you're doing fairly well. I don't now if camillegal is recurrence or not but hopefully she'll be chiming in soon. Even if she doesn't have answers for you she's a riot and will definately lift your spirits. (I must meet that woman some day.)
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sduch1 if you are concerned about c-diff ask your doc to test a stool sample. Most likely it is not, b/c if it was, you most likely would have run a fever and had liquid stools that increased in frequency rapidly. Mine started on a Sunday at 3 times/day then by Monday was up to 5 to 6 times a day and by Monday night it was so bad I was waking up in the middle of the the night with liquid diarrhea several times. I lost several pounds in just 36 hours. I was very sick and knew something was very wrong.
Even if you don't have c-diff, your system may just never have gotten back to it's normal bacterial flora after chemo. You may want to discuss Florastor with your onc. It is a yeast probiotic. Several research articles show how it helps in c-diff cases. I strongly believe it is what kept me from having a c-diff recurrence. I take it plus another regular probiotic containing acidophilous and bifidobacterium. But the Florastor is what fixed me up...I had been on the regular probiotic yet still got the c-diff. Florastor is different b/c it is a yeast and doesn't get killed off by antibiotics. I am now more regular than I have been in my life - better than BEFORE chemo! It is expensive, though...
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sduch, what Dancetrance said! If it was cdiff you'd know. But i have had D as a SE and before chemo as well. I am on imipramine to help. I also agree with the probiotics they help. One time before chemo I had D. It lasted over 3 weeks. I couldn't go to work at all. Doctor said better out than in and to let it run its course. Yuck. But if immodium is not helping unless you are taking the max of 8 a day, get help. There are many things they can use. The danger is dehydration. It affects your whole body and even messes up whatever meds you might be on. It's definitely worth a Dr visit. Much love.
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Thank you so much for responding so quickly! I think the one you are referring to also known as TDM1 is not an option for me yet. It's not approved unless not only Herceptin stops being effective but another such as Taxotere. I'm guessing that will be my next agent. I've been averaging 8-14 months when whichever chemo I'm on is no longer effective. Still waiting for the preliminary biopsy. It's been a long day and might not hear until tomorrow. Oh, well. Trying to stay busy, but not sleeping very well.
Thank you for the cyber hugs also. That makes me feel good.
Take care,
Susan
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Camillegal, Thank you for your words of encouragement. I haven't heard from anyone yet with the same or similar met as me. Still waiting for the preliminary path from Friday. With all I've been through, the anticipation is the worst. I can usually cope better once I have the full picture and treatment plan. Have you or anyone you know been on Taxitere? From what I've read, side effects can be nasty. I'm "wrapping my head" around accepting that is my next chemo and fully understand there is an 80% chance of losing my hair. Believe me, it's not that I have long, flowing beautiful hair. Far from it and short, but nonetheless, will be another trauma. Big sigh...
I see you live up north. I don't envy any of you and won't make you feel worse by sharing the temp. in sunny South Florida! LOL We will be dipping to the 40's tomorrow night. Brrr for us. Spoiled, I know.
Take care,
Susan
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Moonflwr,
I do have a question. I see from your history that you were on Herceptin, Taxotere and Carboplatin. I'm fully expecting Taxotere to be next (since my MC has already told me that will be next once Tykerb is no longer effective), but he has not mentioned Carbolpatin. I have been on Herceptin for 3 years. What can you tell me about the reason you were on this drug with the other 2 and how you did on it. Hopefully, you are in remission and you are happy with the results of your reconstruction.
Thank you,
Susan
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ty also for responding to me. i was really worried last night and this a.m. i think bc it has lasted so long, more than 2 weeks. i was actually just searching for "probiotics" and came across your answers to my post! i am also worried bc i am a year out from chemo although only 6 months from herceptin and haven't really had problems with the big D. it was more the big C. i dropped off a stool sample today at my PCP. i also stopped at a natural grocery store and they recommended a certain probiotic that has 10 strains of good bacteria. i just took my first one. i will have to look into the one you mention dancetrancer. i think my whole intestinal tract is all messed up. i had a lot of GI issues and things keep cropping up. did you notice any reactions to taking probiotics at first. the woman who recommended it said sometimes it takes awhile to get used to it and to start slowly.
susan--sending prayers your way...
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SusanK426 many of us have here have been on Taxotere (TCH). I think I was OK till about round 4 or 5. The trick is to keep active if you can. But of course those of us that had it as a first line of treatment might have an easier time because our bodies haven't been subjected to all the other chemos you've been through. It is one of the tougher ones but Adrymicin seems to be the worst. Granted I know a gal who only had hair loss from 6 TX of TCH. So you never know. You might be one of the lucky ones.
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Miss Susan....welcome and sorry to hear about your situation. This is my first go round with cancer, and praying my last...but we are all here for support!
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Susan,
I don't know whether you've thought about it at all, but the nurses in my chemo room have told me that the chemos that the cold caps are most successful for are the taxol/taxothere group. They've told me that the cold caps can prevent hair loss completely for these chemos.
Nicky
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Susan, TCH is a common combination for us Her2 gals who are early stage. . TaxOTear! LOL. Tears, running nose. Not much fun. But your level of T will probably be a lesser dose as they are using it to stop BC from advancing not throwing everything they have at it like they try with us early gals. Although they had to lower my Dose because I had some issues with meds and tax and carbo not playing well together so I was hospitalized and my dose of everything lowered.. As for hair there are cold caps you can do. I think Dancetrancer did those to keep her hair. My SEs were bad taste and hair loss and the big D. Which led to dehydration. I wish you a lot of luck but again they are careful with the doses so you shouldn't have too much trouble. And I am sorry I am not sure which tx caused the most problems.
Sduch, I don't think I had issues with the probiotics. They did start helping quickly. You may have to try other types till you find one that makes you better. I am 18 months PFC.
Much love to all.
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I didn't have trouble with probiotics, but I did with prebiotics. So yes, I would go slowly. Everyone is different.
And yes, I am one of the ones who did the cold caps and had success in saving my hair with TCH.
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? Can someone tell me how long after mastectomy did u wait for radiation? My doc says I need PT first as my arm dont extend well& is tight now bc I need to put it up by my head when doing radiation, is that normal that my arm is like that? plus she wants me evu. for lympedema
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gout, don't know about rads but I needed PT as well. And my arms were not back to a normal range of motion until I worked at it.
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o ok thanks Moon....Yes hoping it goes back to normal geez....Start PT Wed
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Gout - I was told I need to be 6-8 weeks out from surgery, and yes, you have to be able to put your arm over your head. If you aren't at least 6 weeks from surgery you probably still have some surgical swelling which can take ages to go down. Take care.
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Gout I needed PT too. This was even before I got LE. It took a while for the range to come back. I still don't have my full range on the left side but not bad. I didn't get radiation so I don't know how soon but remember those women who did surgery first got chemo 2nd and then they got radiation. Sounds like you have some time.
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Hi goutlaw: I just met with my RO last week and she said that she would do radiation about 4 weeks post surgery. But I tend to think that is if all is well healed etc.
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I am trying to find out what other triple + folks are being advised as far as hormonal therapy. I am 43 and pre-menopausal.
I am almost half way through chemo, and will continue Herceptin through 2014. I have been wondering what and when my MO will recommend as far as hormonal therapy goes.
I feel I have been very agressive with treatment so far, opting for the DMX and not balking at doing the recommended chemo. However, I am just not feeling so sure about the hormonal therpay, especially hearing about the side effects and hearing time frames like 5- and 10-years!!!! I am starting to do my research now so when the time comes I don't end up feeling like I don't understand my options and get pushed into doing something that causes me other problems down the road.
I am seeing my MO next week in prep for my next chemo round. I am thinking I will try to guage what he is thinking as far as hormonal treatment goes. It all just makes me very nervous!
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OneTexasDay I was more scared of hormone treatment than chemo after reading these boards. Most of us do just fine. I was a little stiff the first year but now just a bit (like 30 seconds) in the morning. An occasional warm flash at night if I ate a lot of spicy food. I now have osteoporosis (just over the border) but I was osteopenic before chemo and I know doing chemo contributed to that quite a bit too.
Thing is most of us find it very doable. You can always quit or try a different drug if the SE are too much. March 1st will make 3 years for me. 2 more to go on Anastrozole.
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OneTexasDay - what are your ER and PR percentages? According to my oncologist, the higher the percentage, the more effective the anti-estrogen drug is at preventing recurrence. For me (I'm only 26% ER+ and I'm PR-) my oncologist is sort of wishy-washy as to whether or not I should even be taking Tamoxifen. On my last visit he showed me charts of recurrence rates up to 6 years out while taking either Tamoxifen or an AI, based on ER percentages in quartiles, 0% to 25%, 25% to 50%, etc., and there was a big difference between the lowest quartile (about 15% recurrence after 6 years) and the higher quartiles (much lower recurrence, and all sort of bunched together). I don't know if these charts included any HER2+ or not - forgot to ask. But my oncologist said that for me, Herceptin was the "big gun". All that being said, I am continuing to take Tamoxifen and having no issues from it except for a bit of discharge, which is common. I don't have hot flashes - just an occasional "warm flush". But everyone is different in their side effects, and the only way to find out is to try it.
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