TRIPLE POSITIVE GROUP
Comments
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Hi everyone, I'm so far behind but I'v been slowl reading
Welcome to anyone new--this is a great group of informative ladies that will give u so much care u will gather so much from all of them (not me) I wish all u newbies the easiest time u can possible have, and as I always say don't google just ask these ladies.
As u know I will be having a peectomy--well that's not the medical name) but they put that camera in u'r bladder so it seems like it should be called that. And it' fortunate cuz I won't have to be put out (that I don't like) So I can announce light, camera, action just like I'm a celebrity. U all know I will do that.
I wish u ladies no pain and no fear.
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Hey camillegal - I hope the peectomy goes well for you - love that name for it . I had one of those a couple of years ago - it was kind of neat cause they turned the screen so I could see it also. I didn't say "lights, camera, action" - wish I had thought of that.
Moon - I agree with you on the study being flawed. When I first got diagnosed with diabetes my D was very low also - I joined a great forum for diabetics and a huge percent of the women on there with diabetes also had very low D - ended up with prescription D for 4 weeks. I think that the inflammation associated with BC and/or diabetes either contributes to the low D levels or that the low D levels allow the inflammation to increase - but that is just what I think and I don't play a doc on tv nor did I stay at a holiday inn last night.
I still can't get my MO to even test D as he believes it has nothing to do with BC and I haven't really had the time to go to my PCP and have him order the tests - I can't just call him - cause he wants to see me before he orders blood tests and I really have no desire to go to an office full of sick people while I am on chemo. So I take a D supplement just in case and my MO is fine with that. I will go see my endo when I am done with chemo and have her run the D and A1C tests.
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None of my mds felt the Vitamin D link was significant despite lots of press and speculation in the past few years.
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Regarding the contra lateral prophylactic mastectomy decision
"reasonable " fear prompts " extra" mastectomy decision . Written by Dr Deanna Attai breast surgeon , president elect of the ASBrS.
Hope this link works.
http://www.bcsmcommunity.org/reasonable-fear-prompts-extra-mastectomy-decisions-an-opinion/
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I had read somewhere, that the very best reason for ANYONE to take vitamin D, is that it toughens up the blood brain barrier, thus making it more difficult for a stray cancer cell to find a home in there brain. And, I know my onc immediately put me on prescription strength D3 way before chemo, so my next question for him too, is was that to cut down the chances of the chemo damaging your brain neurologically, too?
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linda505, my primary care doc tests my Vit D level. I'd have your primary do it and forget getting the onc to do it. Good luck!
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Debiann, radiation was a breeze. I had no real problems with it except remembering to go everyday. I was still addled by chemo! My LVEF is up, but I do need an echo soon. I was at 60% towards the end of herceptin. I honestly think it was the transfusion of red cells that bumped it up.
Oh, and on the vitamin D subject--I think probably almost all Americans are low. We wear sunscreen, sit inside or out on covered porches that look like living rooms...a lot of us are dark skinned so lower UV absorption. It is an epidemic in this country.
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Debiann-no matter whether you choose recon or not, do the physical therapy religiously. I have full range of motion, and don't even notice any difference with that. I went with implants much smaller than my real ones, and it is actually pretty comfortable. I don't notice them unless I lay a certain way on my side, and I scrunch a pillow in the area if I sleep on my stomache.
My echo went from 65-70 at the start of herceptin to a low of 50-55 right at the end. I did notice a little short winded ness. It seems to come back up pretty quickly and when last checked at a year out, was back to 60-65. I haven't had it checked since then.
Cami-I had a peectomy once also. The whole concept had me so freaked out they agreed to give me a Valium (I was begging to be knocked out). They gave it to me and ten minutes later did the procedure. By the time they were completely done, it was starting to work, lol. Linda, the urologist asked me if I wanted to look in his little tube like it was some kind of reward. Noooooo thank you! You are a brave person.mi might look now though. I've seen all the gross stuff and lived through it.
I took tamoxifen for one month short of three years. Hot flashes were my most awful se, with a little joint pain and an occasional discharge. Just recently my pap showed I had endometrial cells in it. Imam not going through the process of determining if I should do anything additional. GYN thinks just switching me to arimidex will solve any problems. Wants to do one more vaginal ultrasound (that he just did a month ago). I think that is just stupidly repetitive. I have a second opinion with a gyno onc on the 23. People I know that have had hysterectomies say don't do it unless I have to. They have some issues now. I think I want a minimum of a d and c for a little better diagnosis.
Pbrain-a gorgeous day like today in Indianapolis just makes me appreciate life so much. I ran around outside all day today also, and it was so perfect. Even did a longer workout than I usually do.
To all you newbies and those currently in the throes of treatment, we might crab a lot about treatments, but at the end of the day, I'd rather be in the here and now, crabbing about if I feel bad, than the alternative.
Have a great weekend everyone. I hope your weather is as beautiful as we will be having in Indy.
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Linda my PCP orders my A1C and D tests..i usually coordinate my tests with my port flush so they can draw it from the port. But i have emailed him to ask for tests and he will write the order. This presupposes that I have been to see him on time! LOL. BTW. How are your sugars when you are on steroids? I hope you are able to control them.
Much love.
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Hey Moon,
My sugar goes up the day before as soon as I start the steroids and remains high through the 2nd day after chemo. They hang out around 200. So high but not so high that it is too concerning. I seem to return to normal pretty quickly after the steroids are out of my system and we have cut the steroids in half once and will be halfing them again this treatment. He doesn't want to totally stop them but I am happy that at least he is willing to cut them.
I am a bit disappointed - this should be my good week and I am just exhausted. I am falling asleep before 8 pm every night and just don't have any energy. I was looking forward to having a productive weekend but that seems like a pipe dream. I know that for most the fatigue was cummulative so I am not looking forward to #3 next tuesday - ughh.
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Fluff,
FWIW, in my opinion getting a d&c is a good idea. I had one after bleeding for 5 weeks straight on Tamoxifen. I had already had an endometrial biopsy that was normal and a TV-US that showed a thickened lining.
My d&c revealed extensive endometrial polyps that were "huge" according to my gyn. Thank God they were all benign. I was so incredibly relieved to get those pathology results!
My onc took me off Tamoxifen as he said it clearly was the cause of all of that excessive growth, and the risk of endometrial cancer was not worth the potential benefit in my case.
The d&c was an easy procedure and recovery.
I have opted to not have a hysterectomy for the same reasons you stated. I could have had it and stayed on Tamoxifen.
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Linda chemo is cumulative. While you might not get new SE the ones you have might last a little longer each time especially the sleepiness towards the end. Hang in there. You're getting closer to that finish line.
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This is an interesting article posted by mary1234 on one of the other boards about Her2+ breast cancer. I'm hoping this link works.
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Dance, thanks for that info! I can get my GYN to do it, even though he thinks that now that I am on arimedex everything will cure itself. I think the reason he isn't real worried is that I have had no bleeding whatsoever. Just the occasional clear discharge that he thought was from the Tamoxifen. I see the gyno onc for a second opinion on June 23, and if he agrees to do the d and c, I am going to have him do it. He has an outstanding reputation and while my gyn is considered top of the line, he doesn't deal with cancer surgery as much as the gyno onc.
Thought these were interesting
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In the medpagetoday article is states:
"Ovarian suppression is already bad for quality of life and symptoms, and an AI makes it worse, Ganz said, noting that even in postmenopausal women, only about 60% of women stick it out to 5 years of tamoxifen or AI therapy."
I had mentioned on Thursday that 60% of women don't finish the 5 years of hormone therapy (Granted this is probably in the world and some of it might be due to cost). She replied "where did you read that?" Ironically I know she was at the meeting last weekend. She goes to all of them and this one was within 5 miles of work!
Can you tell I am not happy with her right now.
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Lago, my onc kept telling me I shouldn't worry as I was very early stage one and with all the treatments I shouldn't be looking at distant recurrence. I printed off all the signatures I could find from here of people that started out with nearly my diagnosis and gave them to him at one of my appointments...all highlighted.
He just started laughing. I think it lightened his day and I made my point.
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ACK so confused!!!!!!
4% difference in disease free survival - yikes not sure what to do
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Fluff my onc was just the opposite because of my big tumor, grade 3. Granted I usually trust her but I felt she wasn't prepared to say anything other than "If you don't want Aromasin the do Tamoxifen because you are high risk for recurrence." Oddly I always thought I was moderate risk because no nodes. Even my DH felt she was pulling things our of her ass. I think what really threw us is when she started talking about ILC then saying "oh it must be a typo!" She even said Tamoxifen was "better than nothing." Not that I want to do Tamox but we know it's a bit better than that.
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Good morning ladies. I have read the above posts with interest. I cannot find the article (will continue searching)-but peer reviewed and I think presented @ one of the big BC meetings. Statistics (which can be manipulated) something close to of the women who need AIs or Tamox only 5-10% of those complete 3 years. The reasons for stopping were SE related. My MO wants me to stay on as long as I can tolerate the SEs. He admitted had I been able to complete the taxol plan or Herceptin he would be less "pushy" about Femara. I get it-and very much understand what Femara does and the risk I am in even with Femara.
For everyone there is a quality versus quantity that only the person can decide. The quantity-using the BC calculator does not take into consideration not completing taxol/taxotere or use of Herceptin or stopping Herceptin.
My MO; who is not a spring chicken; tells me how much he has learned from my experiences (and pushiness including bringing the newest peer reviewed articles on triple positive BC I can find) as the three MOs in the practice had never had a case of a patient having Herceptin stopped due to lowered LVEF prior to mine. I had numerous of the "rare and unusual" SEs as I travel the winding road.
My point being the quality. Many of us speak of where we were prior to BC. For those of us-who decide quality over quantity. I, for one, offer my total unconditional support. I have approached the topic with family and hit a wall of "how could you stop?". I met the same with a couple of friends as I just tossed out the topic for general conversation of women have trouble taking the drugs and sometimes stop early. I am still taking the drug. But wonder almost every day if it is doing the job and is the pain a SE or something else. The insomnia, dreams, mood swings, etc. Wonderful adult children and a precious new granddaughter. I keep on.
Having been a nurse since the dead sea was just sick with clinical master's degrees I believe in science. Am hoping for an AI just around the corner with a fewer SE profile.
My tirade for today, Wish there was spell check
~susan
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MOMMA just posted an article that referenced the "only 60% of women finish the 5 year course of AIs ( I believe), but, even I don't trust my chemo brain quite often. LOL
It's day 4 for me on Tamoxifen. I first tried Arimidex, letrazole then Femara. All mad me pretty tired and achey. I may be getting a little tired now, or it may be the long mountain bike rides in the AZ heat that is tiring me out. I can finally ride again! YAY!
I am an avid exerciser and did as much as I could throughout treatment. I was even doing some running between chemo cycles. I really thought I was feeling better at different times around/during radiation, but the AIs slowed me WAY down. Before I decide to quit continuing treatment I'm going to give the Tamoxifen a go and see.
I am nursing an injured knee. Has anyone developed a cyst while taking AIs. I had an MRI and it revealed a 1.6 CM cyst. The Dr. ordered PT for 4 weeks to see if I have improvement. It's bothered me for about 4 weeks already and limits activity. I can't run or else really pay for it. It only hurts in certain positions, so I can get comfortable and be pain free if I can alter my stance or seated position.
I'm curious about others because I don't read this to be a side effect.
Thanks again Ladies for ALL the excellent reading you provide!
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livin-in-sunshine I actually developed a huge cyst on my ear last spring. My ENT said it's usually from an injury. You'll see football players get that. I told him unless my DH is beating on my ear in my sleep I don't know of any injury incurred there. Hard to believe that would be AI related. I looked like I had a Hobbit ear.
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Fluff, thanks for those articles. Lago, I'd be annoyed, too.
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Lago-that comment my onc made was back when I was diagnosed, not recently. He absolutely thinks I should be taking something now. Just feels like as long as I do, the fish is really small.
So, I've been researching updates from ASCO. Seems like the trial Special K and I are in has good results continuing, particularly for the lower her2 expressing and triple neg folks. Good news all around!
Although, I can't understand everything I've been reading. Might need pbrain to explain it in normal people language.
http://online.wsj.com/article/PR-CO-20140423-910599.html
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Fluff I just sent her the link to the article through mychart. (Granted I did put non-urgent)
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great Lago! I thought I would drop off copies to my onc also, although he usually knows about them ahead of me. He either goes or gets all the transcripts. The oncology manager for the trial says they are moving into phase III.
Also, somewhere I was just reading that tamoxifen for ten years in women who started as perimenopausal or pre and then moved to menopause is really good. I'll see if I can find that link again.
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Fluff I was never on Tamoxifen. I started in Anastrozole even though perimenopausal at chemo. I just wanted her to see that 60% stat that I quoted.
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pbrain here, to the rescue. tee hee! Simple language, the vaccine is teaching the immune system to recognize the Her2 receptor (which is actually expressed in a lot of cancers, we are just called Her2+ because we over express to the max, but it is still there in all BCs and also prostate) as foreign and to kill the cell that expresses it. Really amazing because it could seriously help those triple negative women who have cancer cells expressing nothing much that we can attack! I wish I was in this trial. I'm going to keep my eyes peeled for the Phase III trials!
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Re: "it is still there in all BCs"
I didn't realize it was present even in triple negative tumors.
Also, one of the few male posters I've ever encountered here was Her2 positive for liver cancer (I think it was liver - or maybe it had metastasized to his liver from elsewhere, but not the breast).
I recall reading that DCIS often expresses Her2 strongly. I need to re-find that link/article. I think the theory was something about Her2 fueling the cells to eventually break free from the ducts but I might have that screwed up (it's been over a year since I read the article).
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Hmm. Wondering if "not qualified for Herceptin" could also mean had to stop early?
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That would be of great interest for me too Susan! I did have to stop early. But even though I'm triple pos. So glad to hear about something for trip neg! Cool. Keeping fingers crossed that phase 3 is great too.
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