Starting chemo July 2014
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Elaine, I took Fosomax for 5 years without any problems. Remember to take it on an empty stomach in the morning and that you can't lie down after you've taken it, must stay upright. At least it's only once a week.
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Thanks, Puffin. That's reassuring. Yes, at least it's only once a week! For some reason, I was sleepy on the day I took Fosomax, but I'm not sure if that was due to the new med or the afternoon I spent at the pool.....
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Went to my MO on Wed. Seems there is a new drug for those of us with Stage 1 - 3, Her2+ cancer, so call your MO if you had Her2+, ASAP, as you would need to start now (some timeline in relationship to when you ended Herceptin). Seems to have some icky side effects. It is called Nerlynx... the diarrhea side effects are bad, like Perjetta's. To take it they recommend lomotil 3 times a day for the first 2 months. I don't want icky chemo side effects anymore, but I have a 10 year old and two 13 year olds. I don't want my cancer to come back, they need me, but oh God, mouth sores, nausea, diarrhea, nail issues, etc... I'm going to go to the Her2 page now and see if they are talking about it.
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kmntwins,
Yes, I've heard of Nerlynx, and there are a few threads devoted to it. I'm not sure I want to take it; the side effects might outweigh any benefits. I will ask my MO about it at my next appointment in September.
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knntwins,
Nerlynx may not effect you too bad and I hope it doesn't. I was in the last clinical trial for it, where they were trying to get the Imodium dosage figured out. I finished the trial in February of this year. I really didn't have too many side effects and when I did, I sometimes wondered if it was just something I ate too much of. I was able to completely drop the Imodium eventually.
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Dearest chemo sisters!
After 6 rounds of Xeloda, my latest PET scan shows I am now in remission! Praise God!
Hoping it lasts a long time!
Love to all
Mags
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mags - that's fantastic news!!!! I'm so happy to hear this. Way to go!!!!
Nancy.
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Mags!
Wow! All hail Xeloda. Yes, praying that you're NED for years to come.
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Mags - wow - answered prayers! Amazing!!!
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Awesome news Mags! I'm so happy for you.
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woo hoo Mags!!!
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praise the Lord Mags!!!!!! I'm so happy to hear it!!!!!!
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Hope you're doing OK, too, Pinkninja! Take care of yourself.
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Good news Mags. Rejoicing with you.
Pink ninja. So glad to hear from you too! Praying that your treatment plan and your strength
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Please say a little prayer for me (yep the tune is running through my head). Although I was NED and still appear to be, there is a new drug on the market for Her2+ folks, called Nerlynx. The side effects are horrible looking, as in, you have to take 6 imodium pills a day. I'm terrified, just like I was every day before I'd go in for chemo. I'm so thankful that something like this is available, and it may increase my chances of no recurrence by 34%, so I'm going to do it, but I'm a mess. Honestly, if it wasn't for my July Sisters who had recurrences, I might not do it, but I have to stay strong and you have brought home, that yes, this 'shit' does have a way of coming back. I love all of you and could not have made it through chemo without you. Thank you for being the sisters that I never had!!
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Oh kmntwins!
You brave woman. Yes, praying for you. Some of the women on the Triple Positive Board have talked to their MOs about Nerlynx, and they've been told that the benefits don't outweigh the side effects. I will be talking to my MO on Wednesday about Nerlynx; I wonder what she will say.
Good luck -- hope you don't really need to take 6 Imodium pills a day. (Imodium makes me constipated.)
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Good luck knmtwins. I hope the side effects aren't as bad as they say and you'll do well. Thinking of you.
Once again I had another abnormal Pap smear 😡. Today I did a transvaginal ultrasound. I already had an endometrial biopsy and cervical biopsy which came back with inflammation. Have no idea what's going on. Have to wait a day or two for results. Honestly I'm getting annoyed lol. Once again I stopped tamoxifen which I blame all of this on. My oncologist told me to continue it. Nope not until I know what's going on. Blah😡😡😡
Hope you are all doing well
Nancy
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How frustrating, Nancy! Ugh!!! Let us know what happens.
I just had a pap smear, too. Waiting to hear my results.
I talked to my MO about Nerlynx today. She didn't think there would be much benefit, now that I'm 2.5 years post-chemo. She also noted that my risk of recurrence has gone down for an HER2+ recurrence because I've made it 2.5 years without a recurrence. Of course, she also mentioned that the diarrhea side-effect is sometimes bloody diarrhea. Charming. Hope that doesn't happen to you, kmntwins.
Oh, I lost one pound since my last check-up. Progress (?).
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Nancy, how horrid... and yep thanks for the reminder, I need to schedule an annual with my OB/GYN. Interesting about 2.5 years meaning something with Her2 cancer. Wish I knew more.... I love that they are finding so many solutions for our cancer, but with they had decades ago, so there would be more substantial data. As to Nerlynx, I pulled on my big girl panties and took it Monday night. 4 hours later things tasted weird... memories of chemo...7 hours later horrible stomach pains, 8 hours later vomiting, then ok, 10 hours later stomach pains again, no vomiting. Called MO in the morning, was told to stop for a week and then start with only 2 pills. This better be worth it.
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Ugh kmntwins!
Hope two pills is more tolerable for you. Yes, I don't miss things tasting weird. I think that one reason that my MO thinks my cancer was driven by HER2+ is because it had a high level of overexpression.
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Ugh kmntwins - that sounds awful. I hope cutting back to 2 pills will help. I don't know if I could do it. I hated having food taste weird - not fun. Stomach pains and vomiting is even worse.
Elaine - yay on losing a pound. Heck I'd take that lol. We went to Kauai and I gained a couple. It will never come off. Blah.
Ok so my ultrasound was normal, but my uterine wall was slightly thickened. Ho hum. I guess postmenopausal woman should be between 4 and 5 mm. Mine was 5.8mm. So we still have no definitive answer as to why I have atypical endometrial cells so since my OB/GYN is a nurse practioner I'm going to go see the OB/GYN she's been consulting with about me. Basically I can either have a D & C or wait 6 months and do another pap and ultrasound. I'm not one to sit around and wait. I'm going for the D & C to get to the bottom of this. I have not been taking tamoxifen which makes me nervous. Of course, my oncologist is out of the office for 2 weeks so I can't discuss with her. The attending physician said that being off tamoxifen for a month won't make my reoccurrence rate go up so that made me feel better. My consult with the ob/gyn is Monday the 16th. Hubby said I can't go in the room with you for the D & C last time I fainted (yeah he did - I had one years ago). I said oh hell no you won't be in the room with me. You sit outside ha ha ha
Hugs ladies
Nancy
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Just to let everyone know, mags husband died and the funeral will be this next week. They were together over 30 years.
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Thanks for letting us know, Puffin, even though it was sad news. Praying for Mags!
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Oh Mags, so sorry to hear the news about your husband. Puffin, thank you for letting us know. Prayers to all.
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Oh no - Mags my sincerest condolences to you. I am so sorry to read this. Hugs to you.
Puffin thanks for letting us all know.
Nancy
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Praying for you Mags
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Mags, my prayers are with you during this difficult time.
Puffin, thanks for letting us know.
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Mags, praying for you and your family today. Praying for your strength and peace at this time.
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❤️❤️❤️❤️❤️❤️❤️💔
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I just saw this, so sorry and so much love and strength to you and your family.
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