TRIPLE POSITIVE GROUP
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Thanks shore1 - got short hair cut today and will plan the shave for 2 weeks! I already was on the emend for the first 3 days and now using the compazine every four hours to keep the nausea bearable!
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3,short hair is a good thing. When it starts to come out, its not so shocking. Weird to look at yourself in the mirror, though. Buy a sift hat for home if head is cold. Buy a pretty one for outside.
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Yay Cypher!
Moon, I am sorry about that. It definitely does not sound like fun.
I had a really soft sleeping cap that I loved for sleeping in. You won't believe how cold your head gets without your hair. The gift shop at my cancer center sold these sleep hats that were just plain cotton with no seems in them that were made for sleeping. They came in all colors. If I hadn't lost it, I'd still be sleeping in it.0 -
cypher - belated yay for the rads finish!
moon - bummer...
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My head never got cold when I was bald… but my ears did. I used to wear headbands around my ears when I went to bed. Now, after 2+ years I'm used to it but every so often I might have to wear the headband around my ears to bed. I don't wear hats either but live in 180s in the winter. Have yet to get the ones with headphones.
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Great news, Rozem!
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Moon...bummer about the magnesium, but your bones should benefit from it on the plus side.
Lee, loved the cartoon....it is so true. If my husband gets the least little bit achy, he goes to bed and I don't see him for 24 hours.
On the steroid high, nothing worked for me. Ambien just made me tired but awake...a miserable feeling. I just gave in and stayed awake for the entire night and well asleep about 6 the next morning.
Tonlee...I would have chemo three more times before I would have another kidney infection. That was the worse pain ever. I could barely stand and the intense part hit me really fast.
Lago....you are right, the two year mark is something. I was just thinking the other day that this is the first time I have felt completely back to my old self. And that includes eating bad foods,,which I have really got to get back off of.0 -
Ashla, thanks for saying that. Radiation was worse for me as well. It was obviously super compressed, so there’s that. And also I really paced myself for chemo, and to have to deal with rads afterwards … I guess I was really burnt out on being a cancer patient. I’m sure y’all can relate!!!
Moon, that sucks.
Lee, thanks for the link. Interesting stuff. I’m particularly interested in the inexpensive oncotype-type test. I wonder whether the test says anything useful or interesting for those of us who definitely have to do chemo anyway. Hmm, not a well crafted sentence, hopefully it makes sense anyway.
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Moon - that really sucks. CFS. I just did a little search on this for you, b/c it seems so unusual to be having symptoms like this that long after chemo. You might find this article interesting/helpful or it may lead to other articles. Here are a few snippets:
Chronic hypomagnesaemia starts to develop 3 weeks after the initial chemotherapy and usually persists for several months.46 Occasionally hypomagnesaemia may persist for several years after completion of treatment.47
Carboplatin, an analogue of cisplatin, causes nephrotoxicity and hypomagnesaemia less frequently.51
Magnesium Metabolism and its Disorders
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855626/
Looks like this is not very common. You have every right to vent. Hugs!
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Ladies, there is a new test being developed/studied that shows promise for predicting in ER+ women how high their late recurrence risk is. This is one to keep an eye on. It would help us decide at the 5 year mark whether to continue endocrine therapy or not.
New Score Helps Predict Late Distant Metastases in ER-Positive Breast Cancer
snippets:
- A new multigene score called EndoPredict improves on clinical measures for predicting whether estrogen receptor-positive breast cancer will metastasize, especially in the long term. The score therefore may help identify patients who can skip extended antihormonal therapy.
Patients having a low vs. high EndoPredict clinical score at 5 years of follow-up were five times as likely to remain free of distant metastases thereafter. In absolute terms, more than 98% of this low-risk group was still metastasis free at 10 years.
"The EndoPredict score identifies early and late recurrences, and offers independent prognostic information beyond what can be achieved with all common clinical parameters," Dr. Dubsky maintained.
"We believe that gene expression data may help establish patient subgroups with a very excellent prognosis and thus facilitate the therapeutic choice."
"I think what is special about the signature is that it can predict the late recurrences better than others do because it is not relying solely on proliferation."
"Risks and side effects of extended therapy should be weighed against this outcome," Dr. Dubsky recommended.
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DanceT that is interesting considering that article I used to post indicates that many of the long term seem to have low grade. I know I don't want to take an additional 5 years of EST because of what is doing to my bones. At the rate I'm going I'll have osteoporosis in 1.5 years in spite of all the D, Calcium and exercise I do.
Moon I really hope they get this resolved for you. Other ways to sneak in more magnesium: put avocado in your salad. Peanut butter, I can eat it off a spoon but good on celery. Spinach sauteed in a little olive oil and garlic is so tasty. The only way I"ll eat it.
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3littleangels - your onc can get you different drugs if you don't feel that the ones you're on are working - give them a call before the weekend!
My head nver got cold either -
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Dancetrance, very interseting, thanks for posting. Kayb I would be very interested to hear the result of your inquiry, if any!
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Very interesting, but I see that it's for HER2- cancer - why does it feel that all bets are off for us sometimes?
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Funny LindaKR I feel they are doing more for HER2+ than any other breast cancer.
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Moon sorry u'r going thru this now---I'm still going thru this-mag and pot extremely low--I take 8 pot pills and 4 mags a day and I still get IV---I get a blood panel every couple of weeks--that the bigest thing they have to keep up with it--so as long as they keep up with it it might level off. Are u on any kind of diuretic med or et diarrha on occasion? Those are 2 biggys--but it happens to more than u think--it's crazy right when u think u'r done somethin drags u back--I hope they can resovle this problem soon for u, It's tiring for u and with no explanation agrevating too.
Good Luck with that.
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thanks for posting the link to this article dancetrancer.
off to Robbie Burns dinner & dance @ local Legion this evening. (no Haggis for me!)
cheers
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Pot comes in pill form now?
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I agree about treatments Lago, but when you look at the recurrence risk calculators, we seem to be in a grey area. Like the article listed above about predicting distant metastisis in ER+ cancer, it states that it's ER+, HER2- cancer. But in the new treatment areas we score!!!!
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camillegal - do you take the pot pills for pain? I've tried it for the AI pain I have, not in pill form, but edible & smoke (I do have a medical mj card) and haven't found much relief, but I have a coconut oil butter made from it that you can cook with or rub on, and rubbing it on when I have pain flairs, even deep ones, really helps!!
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LindaKR, I do believe she's talking about potassium.
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Hee Hee too much fun. Sorry LindaKR to confuse you.
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Hi Everyone!
Long time no see, I know. I have been so busy lately which is a good thing. Been doing great now almost 2 years after chemo.
I have a question for those of you how know how this all works. I have been volunteering at a local oncology center. I sit with patients who are having chemo and talk with them. The women there who have triple positive like us have a totally different regiment than I have heard before. They do Herceptin EVERY week during the chemo stage. Then when Chemo is completed (T and C) They continue the Herceptin every 3 weeks for the full year.
Have things changed?
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Hi nora_az,
I'm in California and that's not been my regimen. I'm doing the TCH every three weeks.
I think Steiner (another triple positive) might be on a different Herceptin regimen based on side effects (?). Maybe she'll see this and weigh in.
Glad to hear you've been doing so great during the last two years! I got up to page 145 in the archives and remember reading several of your posts.
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Nora, Don't know if things have changed or not but that is exactly how my treatment was. I had herceptin with my chemo then every 3 weeks after ( my last herceptin is Feb 6th ( Hooray). My chemo/herceptin was from 02/15/12 until 05-30-12 and then herceptin every 3 months. So happy to hear that you are doing great..
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Nora: If I understand what you are saying, there is no break for Herceptin. Most of us had chemo and herceptin every three weeks but I think you are saying they get Herceptin between chemo treatments? Right? Kind of makes sense since they say Herceptin works best with chemo.
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While I was having chemo every 3 weeks, I had my herceptin every week and when my chemo was finished I went on to herceptin every 3 weeks. I was told I could have herceptin every week but I chose every 3 weeks. Looking back I think I would have done better having H every week and now that I know what I know from having read all the posts--I would have asked for l-l/2 hr. infusion, not 1 hour. Ah, hind sight!
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I believe it just depends which chemo you are on. I had AC dose dense x4 every other week. That was followed by weekly taxol with weekly herceptin. Once that was completed I went to herceptin every 3 weeks. Had I done TC every 3 weeks then you do the herceptin every 3 weeks. Herceptin website shows dosing for both options so its just a preference depending on patient age, whether risk of heart issues, etc on the AC protocol are worth it and physicians/health systems preference.
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kayb, I too would be interested in hearing the results of your inquiry.
Linda, I didn't realize the EndoPredict is only for Her2 negative (read the article quickly...have a tendency to do that!)
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I had AC-TH EVERY 2 WEEKS THE TAXOL & HERCEPTIN EVERY 2 WEEKS AS WELL 4 TIMES THEN JUST HERCEPTIN EVERY 3 WEEKS FOR A YEAR.
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