TRIPLE POSITIVE GROUP
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Gosh, me too, carberry!! Docs wanted to hospitalize me too but I begged for another couple of days to work on it and that's when I went to my GI doc. Bananas, applesauce, saltines and Gatorade have saved me, but that's all I've eaten in three weeks (plus jello and popsicles). It's been really, really hard and that's why I dread my next TCH so much. I can manage all of the other SE's with no problems, but this awful diarrhea has almost gotten me down.
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I didn't have c-diff but I can totally relate to peggy and carberry. Round 2 was HORRIBLE with the diarrhea. Whenever I ate, within 30 minutes I had to make a mad dash for the toilet. I had no idea anyone could actually "go" that much, I was quite shocked with myself!
Anyway, I never said anything to my onc till I went in for my 3rd round, explained how I had been living on Imodium ad and the constant diarrhea etc. She had the onc nurse giving me 2 Imodium ad's during that chemo and ta da!! Problem solved. Now whenever I go in for my infusions they give me 2 Imodium's during chemo. Yes, I still get diarrhea but nothing like during the 2nd round. It's still confusing to me how taking it during chemo can make a difference for the whole 3 week duration but I'm not complaining!
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The nurse at chemo training said I would get diarrhea.…very few people get constipated. I told her I would get constipated. Yup I was right. Started 2 days after my 1st tx. I should have listened to myself. I have a box of Imodium I never used.
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I don't know how you are supposed to deal with these side effects when they are so unpredictable. TCH#1 I had no problems (as far as constipation/diarrhea-had plenty of other issues) until day 4 then terrible diarrhea and cramping x 4 days.
TCH #2 I'm on day 2 and have been hit with terrible constipation. I'm using Miralax but it might take a while to catch up now...other suggestions? This is crazy!
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I'm with you Dragon, each treatment my SE are different and hit at different times! I thought the few days of nueropathy were saved for the last week before next treatment. This time, day 2 BAM there they were.
#1 Everything moved fine.
#2 Constipated, took Ex Lax, nothing...took it again...nothing...gave myself enema...OMG...almost had to go to the ER with the pain and spiked a fever.
#3 Took Milk of Mag the night of chemo and the next, everything worked perfect
#4 Took Milk of Mag night of and next, diarrhea
#5 Took MOM night of...everything ok for 7 days and then BAM, diarrhea.
I give up. But I know one thing for sure. I'd rather have diarrhea than be constipated....even if it makes me weak.
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The most important thing for constipation I found was use some kind of stool softener in conjunction with what ever else your doing. I used a probiotic powder in my yogurt for a stool softener. I always did anyway since I have IBS. I also found that MOM didn't work for me. I had to use Metamucil. I also ate dried apricots every day.
The 1st tx was hell with the constipation. After that I started the Metamucil day before I got it (ended up being the night after treatment). It kept things moving, slowly, but moving. Stopped as soon as things moved like normal again. About 2.5 days or so.
Be sure to eat foods with high fiber when you have constipation. I swear I ate my home made chili (lots dark red kidney beans and peppers) the night after my chemo every time.
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Lago I'm using the stool softener now and I'm already eating the apricots and also eating oatmeal for breakfast every day so I think I'm on the right track now. Can you share your chili recipe so that I can make it next time? I love chili! I actually ate a canned organic chili for lunch today but it was rather disappointing...0
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Dragonfly you got mail (PM)
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Anniemomofthree - yes, I had a smaller cluster in the SNB, which was called clear in the OR and later found on post-op path. Day of sx everyone was happy, happy and then post-op check everyone was sad. BS and onc both pushed complete node dissection and only found the one additional, but it was a larger area. Not the norm, but nothing has been so far! That is why I am walking around with only one TE!
TonLee - I had a total abdominal hyst about 10 years ago. Aside from the surgical menopause at 45 (ugh!) it was a great decision. I had it because of symptomatic fibroids (too numerous to count per path report) but had a surprise 3cm mass in the right ovary that had not been detected on US 6 months earlier. Mass was benign but a pre-malignant type, so bullet-dodging definitely. I have had numerous ovarian cysts, including a ruptured one about the size of a orange, and very fibrocystic breasts, thus the BMX. I did not have any symptoms of that ovarian mass at the time of hyst, they just took it all because of my age and then found it on routine path.
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SpecialK, my SN were weird too...the first had the least amt of cancer, the following three increased with the further they got from the tumor. (That's why I'm pretty sure if I let them take more, it is also in my axilla).
My Onc just emailed me. Seems it against policy for him to discuss any medical treatment via email due to security. I have to wait until my next appt.
~sigh~
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Nora - I had a complete hysterectomy b/c my onc wanted to keep me menopausal, which I had been since chemo. I had it 6 weeks ago - laparascopic assisted vag. hyst. - and felt great after about 3 days.
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thanks for the input saralmom. I have to have a hernia repair in a couple of months. I am thinking about talking to my onc tomorrow when I go in for chemo and ask her opinion on it to keep me in menopause. No, I really am not wanting to have it done but at this point, being triple positive I think I (we) should do everything we can to keep this beast away for good.
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I haven't had a period since last Sept and am 52. Onc said if I should start having periods again on tamoxifen there are medications that can be used stop them. They want me to stay in menopause and if I go 1 year from the end of chemo without periods I can switch from the tam to an AI, in my case femara. They didn't mention an ooph.
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I was 39 at dx and did ACTH, my period stopped after 2nd Chemo and it hasn't returned, coming up to 2 yrs since I had a period, looks like menopause is here to stay for me.
I'm not on any hormone treatment as Arimidex caused significant bone denisity loss in my first year on it, ended up with osteoporosis in my hips, it dropped 10% in spine and hips from my baseline scan before starting Arinidex and my Onc said no AI's ever for me.
Due to the fact I'm in menopause, thin and very fit I have very low estrogen blood levels and my Onc is happy for me no to take any hormone therapy. He said it's the Chemo and Herceptin that is the most improtant part of treatment for me and tamox would only reduce my recurrence risk by a further 2% - my ER was 20% and PR 10% so I'm happy not taking Tamox.
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Loulou,
I was so hoping that I could get away without Tamox....I want to see what chemo does to my natural estrogen levels as well...but my Onc won't be on board...I was >95% ER positive. But I think if my ovaries are removed I may not need estrogen suppression...I don't have a lot of fat either....hmmmmmm.
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Good morning everyone!
I hope you all have a great day today. I'm going into my last TC chemo round today. A bit more worn out than when I have been in there all the other times but so happy too! A bit nervous as well about this being the last one. (still having Herceptin though) It better have chased out any of those little bad guys that may have tried to settle elsewhere!
Have a great weekend everyone!
Hugs, Nora XX
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Good luck Nora!!
I'm 2 weeks behind you sista!
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Nora - Congrats!! The last one... I remember being ecstatic for my last one... last time for those SE, made it much easier to get through the hard days knowing that!
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Great news Nora! Enjoy the chemo cocktail...a big milestone! You are healthy and well!
Annie
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Congrats Nora. We'll be doing the happy dance later today.
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Hi all,
I'm definitely a triple positive, with Her2++++ - joining the group! I began chemo yesterday, starting with ACx4, and then moving on to a clinical study to do a year of T-DM1, which is a new targeted therapy in early trials. They have managed to "link" a chemo drug (DM1, a derivative of maytansine) to Herceptin so that it is delivered directly to Her2 receptors, and doesn't attack all cells in the body indiscriminately. So the hope is, more targeted chemo and less desirable side effects. It's had great results in the metastatic setting, and they now want to test it on earlier stage and locally advance breast cancers as well.
All went fine at Dana-Farber yesterday: I was in at 7:15 and out at 2:00. I went home and fell asleep, only to wake up before five feeling nauseous, headachey and miserable.I popped all the magical drugs they gave me to combat the nausea, and they did shit. So after vomiting up three attempts to eat (crackers, popsicles), and lying on the bed moaning with my eyes closed for several hours praciticing Ujiyi breathing (scared the dog), we gave up and called my poor pregnant oncologist fellow at 10 p.m.
Her plan of medical kitchen sink attack worked, and I'm less nauseous this morning. Nursing oatmeal and staring askance at my blessed morning latte, which doesn't taste good any more. On to the next line of symptoms!
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welcome cello mom to the +++ group. libraylil
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Karen - so sorry to hear you are feeling so sick after your AC. One thing I learned the hard way was to take the anti-nausea meds pretty much on a schedule, whether I thought I needed them or not. Starting shortly after getting home from treatment. I found it to be sort of like taking pain meds - I needed to stay "in front of" the nausea b/c it was difficult to get on top of it otherwise.
I hope you feel better today.
(I couldn't drink any form of coffee or espresso at all during chemo b/c it tasted gross to me - so I drank tea for months - and am now happily back into my coffee routine. Lots of things just don't taste right during chemo.)
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Karen - I completely agree with Saralmom - take the drugs on a planned schedule. Stay ahead of the nausea!
Hang in there...before you know it that coffee taste will be back!
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So for those of you who are doing reconstruction and still on herceptin I have a question. Are you seeing your BS while you are on herceptin or your onc and PS only?
Not sure when I'll see my BS again. He said 3 months from last chemo but since I'm on herceptin and the onc is checking me every 3 months the NP said there is no need to see my BS till after herceptin is done. I called my BS's nurse to check and see if that's correct yesterday. She's getting back to me next week. She didn't know either but wanted to know. She said they don't get a lot of HER2+ patients.
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Lago..I haven't seen my BS since a week follow up after surgery. I will see him 6 months from MX..so this summer sometime for follow-up. That's it. I won't see him again. (Hopefully.)
Cello
Welcome to our corner!
I agree with the other ladies here...you have to pop some anti-nausea as soon as you get home...I have every time except last time, and I thought I could wait until bed....ugh, it took two days for the sick feeling to pass.
The study sounds interesting....do they hope this will help with women who become resistant to Herceptin? I thought Herceptin was a very focused drug...meaning it intereferes with the Her2 receptor....if they can make it more so...wow, that'd be really awesome.
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Welcome Cello.
Lago - like TonLee, I haven't seen my BS since after Mast with TE (in October)... I'm scheduled to see her in April after my mammo. As far as I know my MO and RO planned on alternating every 6 months so I see one of them every 3 months. But, my MO sees me every other herceptin which is every 6 weeks....
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I didn't have reconstruction, so I don't have a PS, but I feel like it's just really confusing knowing who to see when at this point. I think I rotate between my MO and my RO and my BS, but I'm not sure how. I guess I think I see my MO every 3 months, then fit in the others something like yearly. And also get mammograms and MRI alternating 6 months. I'm just winging it for now, and I consider my MO the primary caretaker, so I'll let her figure it out for me...
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I was initially told I would see onc every 6 months and BS every six months alternating. But my NP said that women who are on herceptin see the onc every 3 months so no need to see the BS every 6 as well. I'll find out more hopefully on Monday. Seems odd that I would wait 1 year and 3 months to see my BS.
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I agree about the BS - my RO wrote out this whole plan for me when I saw him for a follow up in January. He has me seeing the MO every 3 weeks until June, and then every 3 months after that. And says I should make an appt with him (RO) next January 2012, and make an appt with the BS in May 2012. So that would be about 1.5 years between BS appts?? Seems really long. Weird.
I think I'll call my BS office next week and see what they think. The RO acted like he was in charge, but I still think my MO is my main doc now...
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