Starting Chemo March 2015

IndyGal35

Sharon,

I've done the Cto5K program through an app, and it really works! I was just thinking that I should start using it again to get back in shape. Maybe we could be virtual workout buddies...?

Also, I'm BRCA negative, so I was offered a single or double mastectomy. I knew that my odds of another primary cancer in the left were slim, but I told them to take it. I've never looked back on my decision. Losing my "good" breast was hard, but staring at it in the mirror with panic every morning would've been much harder now, I think. I hope that brings you some comfort as you are weighing out surgery.

KBeee

indygal, remember that is what that doc goes all day. Though it is horrifying for us, it is no different to him/her then a podiatrist looking at a foot. I have found most GI docs to have a good sense of humor and most are good at putting you at ease. Remember how horrified you likely were at your first Gyn visit. They seem like nothing now.Relief and answers are the most important. I hope the appointment goes well.

ksusan

Shaz (and anyone else), please feel free to join us at https://community.breastcancer.org/forum/69/topic/833450?page=1 to support your exercise and well-being.

pboi

Sharon and Lee...I feel the same way you do about the prophy mastectomy. Through genetic testing I discovered I had some sort of variant in this BRIP gene, they are not sure now but think it could possibly increase my chances of breast and ovarian cancer. So I'm trying to do what I can now to keep this away, I'm 43 and really hesitated about going to menopause. I'm having both a prophy mastectomy and an oophorectomy Nov. 11. I'm currently on an AI. I don't want to have this surgery and have thought about cancelling, but at the end of the day I need to know I did everything I could to keep this from coming back.

These decisions are so hard and have me going in and out of the rabbit hole still...

PB

pboi

I have osteoporosis and will be starting a biphosphonate Zometa soon. Don't know if any of you are post-menopausal, but maybe some of you close?

There is research showing that taking a biphosphonate, even the oral pills, might help keep bone mets away. Just...FYI. I don't know how to link the article but it was posted in the Hormone Thread...Arimidex...users, past, present. It's on page 373, and was posted by Pontiac Peggy. I think the title was Biphosphonates and Arimidex

I hate that I have to do the Zometa infusions to keep my bones strong, but happy if there might be the added benefit of keeping bone mets at bay.

PB

Jackbirdie

PB- I have marked your surgery date on my calendar. Will be thinking of you, brave lady. I have seen some info on biophosphonates. It's exciting forward movement. Although I am 58 and didn't have a period for 5 years, the blood tests my MO ran (estradiol, etc) showed my estrogen was still too high for an AI to be effective, but I was too old and too close to being in real menopause for an ooph to make sense. So I seem to be trapped on Tamox for a year or two. Ugh. Knowing that there is a better med out there to protect against recurrence, but it not being available to me is frustrating.

pboi

Katy...due to your age have you had a dexa scan to test your bones? Not that I want for you to have osteoporosis, but if you do have bone loss you might be prescribed a Biphosphonate. Something to think about...

PB

Jackbirdie

PB- I have not had one yet. I will ask my MO at my next visit. Or is it the pcp that orders that? Who owns the dexa responsibility?

pboi

Katy...I would think the pcp could order that. My MO ordered mine because I needed a baseline scan to start my Arimidex.

PB

Jackbirdie

I guess I will ask whoever I see first. Interestingly, there seems to to be some evidence that Tamoxifen increases bone density, while the AIs decrease it. As my MO put it, at least we can build them up a bit before we start tearing down. Oh yeah, THAT made me feel better.

pboi

Was doing a little reading...the dexa scan is not universally recommended until after menopause, and recommended for women over 65. My MO says some of the reason I might have lost bone could have been due to chemo, so you might be able to argue that if they don't let you do it now.

Some do scans starting at 50 depending on risk factors. I think this is important for us. My MOs nurse told me osteoporosis increases potential risk of bone mets, that's where it would go first. So important to know the status of your bones I think.

PB

Jackbirdie

I will use those talking points, PB. Thank you.

IndyGal35

The verdict is that I have an anal fissure. Ouch! They want me to get a colonoscopy, but I know that the fissure came from the bouts of diarrhea/constipation I had during chemo as well as lifelong constipation from a low thyroid. The doc made the colonoscopy sound like it's standard practice when someone has a fissure. I'm 35, and I think it's overkill right now.

I think Bekah had a fissure during chemo, but have any of you had one? Is there a good chance it will heal on its own if I use the cream religiously and take Senna/fiberdaily for a few weeks?

KBeee

tamoxifen has been known to increase bone density in post menopausal women but decrease it in premenopausal women. Katy, you might fall in a gray area, so definitely request a dexa scan. Also, your MO could give you meds to shut down your ovaries if you preferred an AI

SpecialK

I had my first DEXA at 45, just after hyst/ooph. I developed osteopenia, but remained stable without oral meds, which I could not tolerate due to reflux surgery. I might have become osteopenic anyway as I am Caucasian and petite - two known risk factors. I had a DEXA on the same day as the mammo/US that led to diagnosis at 54, so I know exactly what my situation was then - had another DEXA six months after I started Femara (and completed chemo) and had pretty dramatic bone loss, to the brink of osteoporosis. I started Prolia injections every six months, which reversed my osteopenia back to normal density. The thought about bone density is that the more dense the bone, the less likely bone mets can set up shop. Prolia is only available to post-meno, but other bone builders like bisphosphonates - Fosamax, Boniva, Actonel, Reclast once-a year IV, and Zometa are all bone builders. Bisphosphanates build bone by coating the bone - the drawback is that bones can become less elastic and more brittle. Prolia is a monoclonal antibody, like Herceptin, and slows the old bone removal mechanism, allowing the new bone building mechanism to catch up, thus increasing density. Tamoxifen in post-meno women is thought to build bone, AI drugs lessen density. Tamoxifen in pre-meno women allows circulating estrogen to help keep bones strong. DEXA scans can be ordered by primary care, OB/GYN, or your MO.

KBeee

indygal, I had one a few years back. It did heal with creams and such. I did have a colonoscopy at the time which was all clear

Jackbirdie

Lee- so sorry about the fissure. I don't have an answer, but sending a hug. You've had enough.

Kbee and Special- thanks for clarifying this issue. Sounds like now would be a good time to get a baseline.

Special- since I was already so close to "official" meno just before chemo, and had 6 X TC, I might have been pushed into chemopause. I know sometimes that is only temporary, but I'm wondering how long would be a reasonable time to wait before running the estradiol, etc., tests again. I am not interested in taking any more meds at the moment, (to suppress ovaries) so would rather just wait. I think I can tolerate Tamox for 1-2 yrs. but when would they safely be able to determine PFC that menopause us reliably permanen?

SpecialK

jackbirdie - oncs often even start post-meno women on Tamoxifen and then make the switch to AI drugs in order to lengthen the time spent on hormonal therapy. Since the studies are not in yet on whether exceeding the now accepted 5-year time on AI drugs, because of their detrimental side effects - like bone loss, this is a strategy to prolong control of ER+ without the harm of AIs. When was your hormonal level tested? They could test at any time as Tamoxifen should not be interfering with circulating estrogen.

Jackbirdie

Special- it was tested in 2/15, just prior to starting chemo. What I was wondering if there could be any lasting temporary effects of chemo that would give me unreliable low estrogen numbers now.

I think my doc is thinking exactly what you are suggesting, unless for some reason I can't tolerate one drug or the other.

SpecialK

jackbirdie - there is a member who posts on Triple Pos and TCH threads, chemo pushed her into post-meno status, I believe she was 49 at the time. It might be worth doing a panel, just so you know and can plan. If you happen to be needing blood work done at some point maybe just add the panel on. I actually just mentioned to my onc at our last appt. that I would be willing to do the reverse - go off AI drugs and go onto Tamoxifen when my five years are done. He was meh on the idea, not sure why, but he said he would run a BCI (Breast Cancer Index) test that is predictive of 10 year recurrence risk. I checked the test out and it is for node negative (I was node positive), and it is not FDA approved - so I am willing to bet my insurance will consider it "experimental" so unless he wants to pay for the test I doubt it will be done. I am not willing to pay for it out of pocket, I would rather just take Tamoxifen, lol! I will ask for the metabolizing test first though, no point if I can't metabolize that class of drugs, or metabolize them poorly - upwards of 1/3 of the population. I have not taken most of the drugs that utilize the same pathway so I have limited exposure to base any opinion on, but I do know from unfortunate experience that most anti-nausea drugs don't work for me, so I would be curious.

Jackbirdie

So interesting, Special-

My normally open- minded and supportive MO was not willing to run the metabolization tests (claimed he wouldn't even know where to send the blood) and was also negative on starting the AI first and then going to the T. Said it wasn't "done" that way. No trials to support. No. Nein. Nix. Negatory. Hosed

eheinrich

TE fill today. I hate this thing.

eheinrich

I posted this on FB but I know not everyone is on there. Thanks NFL - not!

http://www.businessinsider.com/small-amount-of-mon...

IndyGal35

At least the word is getting out, Eileen! It is one of those "the road to Hell is paved with good intentions" things. Do you know how full your TE's are now? My second opinion PS said that she can do an early exchange, but it's much more risky. I'm weighing options from swapping to deflating to going flat. Just curious where you're at in the process now and if you're pleased so far

eheinrich

I'm at 205 - my reg boob is est at about 350. I have a ways to go. We are going slow, but I think I want them to start upping it. We went to 30ml today - we were doing 25 since I had a bunch of other issues after the TE placement figured slow was good. But I'm so over it. I'm getting concerned that this is going to spill over into 2016. Almost started crying when I looked at a calendar & counted weeks for all those fills. Today I had a lot of muscle spasms - more than usual - yay valium! I just have the left side - I'm not sure what I would've done if I had a double mx. Although I'm only 47 and eventually hitting the dating scene it's hard to say. I'm soo looking forward to putting all of this away, behind me - well, I know we all are.

eheinrich

How full are yours? What are you shooting for?

shaz101

Lee. Yes let's do it together. I need to download an app. U did my fist one last night. It felt so good to be moving again. Im no worse for it this mornig. I'm so sorry about your fissure. My ex had them. Horrid things. Xxx

Karen. I will try and go to the exercise thread. But because of the time differences I often get overwhelmed Trying to keep up.

I'm being naughty... I'm at work. Gotta go.

shaz101

eileen big hugs to you xxx

Jackbirdie

E- so sorry about the fills. Ouch. Thanks for that post. They all do it. They mimic each other and this is now the accepted corporate template. Makes me sick

Ckonicki

I finally finished chemo and I am so happy. Thank you for your support!