TRIPLE POSITIVE GROUP

Geewhiz, my 26 year old daughter has suffered with ovarian cysts since her teens and it is terrible! I hope this is a one time event for your daughter.

My daughter recently had another cyst rupture and now, in addition to being on birth control pills, they added an estrogen pill. The pharmacist was shocked someone so young was perscribed estrogen. With my estrogen positive cancer this doesn't sit well with me or her. She's looking for a new gyno. Anyone else have experience with this? 

Geewhiz & Debiann, my daughter was in college and out of state when she wound up in the emergency room with what she thought was appendicitis. Turned out to be a ruptured cyst. She was then diagnosed with PCOS - Poly Cystic Ovary Syndrome when she came home and went to her gyno. She has been on birth control pills ever since. I too am concerned about that because of BC, but it seems that birth control pills are the only thing that helps PCOS.

I saw my MO this morning before the THP infusion.  We discussed my problems with sleep (or lack thereof).  Up until about two weeks ago I only had problems the night before and day of chemo from the steroids.  The last two weeks I've been struggling all week with sleep.  I'm waking up multiple times, like 6-8, and can't fall back asleep.  She did suggest melatonin.  There are others options but they are prescriptions and can cause addiction.  We can explore that option if this doesn't work and I feel like I can't make it until the end.  This is my 7th infusion.  Only 5 more to go!!

Debian, I don't have any experience that would help your daughter.  I would be concerned though with giving hormones to your daughter knowing your history.  Did you have genetic testing done?  I believe the majority of BC is not due to genetics (at least what they are saying now) but it does put her at a slightly higher risk because of you.  I was told my daughter should start screening 10 yrs before my diagnosed age.  Definitely get a second opinion.  That seems to be the best advice for all treatment.  

Lago, that is the discussion I will be having in 3 weeks with her.  She had made a comment, back in july when it saw her, about Tomax either with or without o/s.  She mentioned the SOFT/TEXT trials coming out in Dec to see if o/s was beneficial or just Tamox would be sufficient.  My last MO seemed to be ok with o/s plus AI as long as I was.  I'm just don't think I truly trust Tamox (for my stats).

Mommato3 my MO really hates Tamoxifen. When I was thinking of quitting Anastrozole she said if I wouldn't try Exemestane, Tamoxifen was better than nothing. She pushed the point I was high risk for recurrence. I went into chemopause and was tested for 5 months to be sure I stayed in it but I was older than you and given my family history the timing was about right. I think if I personally had a choice between Tamoxifen and an AI with Luprin I would choose the later. The SE of tamoxifen ( blood clots possible (although low) uterine cancer) seem much more serious than the ones on AI and AI seem to work a little better. 

But that is what I would choose given my diagnosis and medical history.

ang - excellent!

momma - I think your plan of o/s and AI is good, with monitoring of heart/bones.  My fear with Tamoxifen is its effectiveness if you don't metabolize it well.  Have you had much in the way of chemopause SE?  That might be a clue of how you will handle the o/s and AI combo.

rozem - sorry about the infection, hoping the antibiotics control it and things normalize.

chrissie - welcome!  Taxotere is the culprit with nail issues - hard to say how your nails will do - some of have had ongoing issues with that, others resolved once they stopped the chemo portion, still others had issues because Herceptin can cause, or continue, nail problems.

geewhiz - I had cysts at a young age, and my DD has had them too.  They were asymptomatic for the most part for me, until I had a big one that ruptured - thought it was my appendix too.  They are a nuisance!

Ang so what are you going to do to celebrate!

Geewiz, my daughter had a teratoma the size of basketball when she was 10!  It completely took her left ovary.  We had gone to the doctor several times but he hadn't physically examined her.  She was a little chubby so no one saw it.  Then she came to me one day and said "Mommy, when I lay down, my tummy has a weird curve to it."  I remember so clearly (almost 12 years ago now) her laying down on the kitchen floor and showing me.  Nearly fainted.  The next day, she was in the hospital having surgery.  I was a little worried she'd have trouble conceiving with only one ovary, but at 21, she's about to have her third.  Crazy, huh?  

Mommato3, I was still having regular periods at 50 when I was diagnosed.  Haven't had one since February.  Still, my MO said because I wasn't post menopausal, I'd need to do Tamoxifen.  I end radiation in about 2 weeks, then they'll want me to start.  She told me that AIs are only for post menopausal women.  

efcjax I was 49 at diagnosis turned 50 two weeks PFC. My last period was 2 weeks before chemo started. It was a bit unorthodox to start me on AI but I'm glad my MO did. We both knew my cycles wouldn't come back.

Mommato3 you know what you want to do. You have picked an option now move forward. Like you I was worreid about the effectiveness of Tamoxifen. They really don't know who isn't a good metabolizer of the drug. The test is not that reliable. 

Rozem, I'm not sure how long you stay on the shots.  I have read about some who were on them 5 yrs and others who were told by their MOs that they don't like more than 2-3 yrs.  So who knows.  You are now 3+ yrs out which is great.  My biggest concern is the first 2-3 yrs when recurrence is highest.  I assume I'll need a bone density scan to see where I'm at prior to starting.  Is your infection starting to heal?

I really hate blood test results!!  They make me crazy and steal my happiness.  My liver enzymes were slightly improving until my bloodwork on 9/23 when they shoot up again and now all three are high  and not just a little high - like 4 - 5 times normal and now my platelets are low - they never went low during chemo - they are only a little low but still - it has been 4 months since my last chemo - why aren't these things returning to normal or at least not getting worse.  I didn't see my MO for my treatment on Tuesday so when I was given the blood results I asked the nurse about them and she said she has no idea but that the doctor signed off on them so he is not concerned.  UGHHH    Any ideas, suggestions ????

I do not take any pain relievers  - no aspirin, tylenol nothing.  I take calcium, magnesium and Vit D, armidex and herceptin - that is it.

my infection is getting better. It didnt look as angry this AM

Momma. Its a very very tough decision made even more difficult by how different each MOs opinion is on the matter. Try the shots and tamox first. At least the menopause is reversible. This will get you to the study results then you can make a more informed decision on switching to an AI. The issue is do we keep taking the shots so we can eventually turn the ovaries back on or is the estrogen always going to be our enemy in which case do we just remove them.  Ugh!!!!!  

Just FYI i have never felt better or had as much energy as the few wks prior to me getting a period   It really saddens me that i have to get rid of the estrogen so early but you do what you gotta do 

I love to read Camis posts.  They always make me smile.

Linda, my liver numbers have stayed in the normal range so far so I can't give info with your chemo tx.  But my MIL had pancreatic cancer.  Her liver numbers got real high, went down, back up, down, up, for a while.  She has had plenty of scans (Cat/pet/MRI) and there wasn't any cancer.  Her MO just said the chemo she was on was tough on her liver.  It might just take some time for everything to even out.

Geewhiz, it's good to see someone so far out that has taken Tamox.  I believe the trials showed a 4% difference between Tamox and AI.  It's not a big difference but for me it just might be.

Rozem, I agree it's hard when different MOs have different ideas.  Getting the shots is a definite regardless of whether it's with Tamox or an AI.  I don't think I want my ovaries turned back on.  I'm 90% ER/PR positive so estrogen isn't my friend.  I figure since they are now recommending 10 yrs of Tamox that they are concerned about the estrogen we are producing.  Are you saying that if I do the shots and an AI that the menopause won't be reversed if I stop?  I assumed it was the same as shots + Tamox.  The shots are what is pushing me into menopause.  

So I went and bought the melatonin yesterday.  My MO had initially prescribed 5mg but cancelled it because she said I'd still be tired the next day.  She said to take 1-2 mgs.  I took 2 mg last night and I still didn't sleep ALL night.  Is it because the steroids counteracted the melatonin?  Would I need to take more the night before and of my tx?  Maybe 2 mg will work tonight?  5 more to go!

Benadryl doesn't make me sleepy.  I get it with my infusions.  I'm sleepy for about 10 mins and then I'm fine.  I've never been able to take NyQuil or Tylenol PM to help me sleep either.  I'm starting to think I'll be sleepless for the next 5 weeks.