Starting Chemo March 2015

eheinrich

Glad you're feeling better Allison - good luck today with your MO appointment. I hope you find a good fit.

That's a great pic of you & your furry friend Whitney

SpecialK

trvler - I think it can be a more direct result of the Taxol itself. The same way others experience heartburn, mouth sensitivity and GI sensitivity. None of that comes from a lack of estrogen, it is a function of the chemo therapeutic agent itself

IndyGal35

Hope the appt goes well today, Allison, and I sure hope you can get your infusion tomorrow.

Today, I saw my breast surgeon for the last time until January of next year! Is it weird that I wanted to cry when I left her office? She was my first point of contact after diagnosis, and I guess I really bonded with her. Moving forward feels good, but I can never thank her enough for being such a gem.

I'll be 2 weeks post-BMX tomorrow, and I still have drains in. They're up to 35-40mL/drain/day. Yuck! I'm praying the juicing stops soon so the PS can take them out. I see him on Wednesday, and I'm waiting for the RO's office to call me back to schedule my molds, etc.

I finally made an appt with EAP. I go see a social worker in 2 weeks. I have been tough and motivated through this whole mess so far, but I feel the burden of survivorship starting to weigh on me heavily. The docs can try to save us from cancer, but we must save us from ourselves sometime too

rleepac

"The burden of survivorship..." What a profound concept.

Jackbirdie

Sue- NO

Jackbirdie

Lee and Bekah- very profound indeed

Trvler

It's amazing how we all go through these same emotional stages around similar times. I guess I am not thinking about surviving yet….still thinking about making it through treatment.

Very good appointment with possible new MO. Liked her a lot. Only negative is…well, the office is kind of gross. Is this a dealkiller?: There was a piece of bloody gauze on the floor behind the exam table. Another scary thing…she told me the fluid around my heart at my first echo was WAY more than the doctor let me to believe. This was the cardiologist, not the MO. It was a big upsetting. She said the only concerns she would have about my going to NOLA was related to my heart issues. I have another echo wed. Also, she has concerns about putting me on Tamoxifen because of my blood clot. She would put me into menopause and give me Arimedex or one of the others. Any thoughts?

Got another kid with the throw up bug. I thought we were safely past it. I got surgical masks, gloves and bleach wipes to clean up as daughter can't aim and make it all the way in the toilet. PRAYING I don't get it. I can't afford it now.

SpecialK

I have no advice regarding the MO appt other than you might want to consider one, or both, seeing another cardiologist for a second opinion and speaking to NOLA about this MO's cardiac concerns. As far as ovarian suppression and an AI drug to deal with your ER+ going forward - the data suggests this is a benefit, but it doesn't come without a cost - that being menopausal symptoms. Here is the trial info that supports her suggestion. FWIW I would be leery of Tamoxifen with a clot history, particularly in light of the rigors of autologous reconstruction.

http://www.ascopost.com/ViewNews.aspx?nid=20664

Trvler

Yes, I should just hire YOU for my MO. You know as much as any of them. I was thinking I might seek a second opinion cardologist. I like the guy but he is not seeing patients until late Aug because he is doing some hospital thing. Kind of annoying. It just takes soooo long to get records transferred and such. I honestly thought my heart issues were mostly resolved. My clot is gone but I have noticed my heart is racing again and a few beats are skipping. Ugh.

Carrie37

FUcancer, I am sorry you are having the lung issues..it sounds very scary! All of this is such a difficult thing to go through. Don't ever feel alone...we are here for youtoo.

Carrie37

Allison, I don't like my MO's office either. Is that where you would get your infusions? I really like my MO so I don't think it would be a deal breaker for me but it would make me wonder. Sorry about the sick kiddo!

KBeee

Allison, It sounds like the new MO is really on top of things. I would not take Tamixifen if I'd had a blood clot. This is just the paramedic in me who has seen too many PEs in my life. Go with the ovarian suppression and AI. Also, if the injections become a drag, you can have your ovaries removed. Because I failed on Tamoxifen, I had no choice but an AI. The ovary surgery was probably the easiest of all the surgeries for me. I know it is different for everyone, but I was glad to bid my estrogen factories farewell...just one more darn female part (well 2 if you want to be technical) that could try to kill me one day.

Trvler

Ugh, INJECTIONS? How often?

Trvler

Says blood clot is a SE of Arimedex, too? I am looking at the wrong drug?

SpecialK

trvler - a less common SE than for Tamoxifen. Here is some pertinent info:

http://www.stoptheclot.org/article206/

IndyGal35

I was hoping for a full hysto considering my history of uterine hyperplasia and PCOS that cannot be treated with estrogen/progesterone now. How much more difficult is the recovery for the swing set vs. the whole playground?

SpecialK

Indy - mine was abdominal so like a c-section, about six weeks? If you do a vaginal definitely less. Check this site:

Www.hystersisters.com

pboi

Allison...I'm doing the ovarian suppression and AI (Arimidex). Since I recently had surgery and am in rads now, I couldn't do oopherectomy right now, but will eventually. I will start Lupron shots, once a month. They also have shots that last 3 months. I'm hoping since I'm still in chemopause now, the SE from Lupron won't be so bad...

PB

wpmoon

I had the 3 month dose of Lupron during my chemo to protect my ovaries and shut them down. But I'm also younger, and haven't decided on kids in the future, so for me, it was preventative. (Just like the round of IVF I did. I like to think of it as an insurance policy).

shaz101

just a quick pop in to say that I am doing much better. I hope everyone is doing OK. I will read up soon. I've been flat out. It's busy being sick.

Thinking of you all xxx

pboi

Whitney...nervous about the Lupron injections. Did you have many side effects? How'd it go for you?

PB

IndyGal35

SpecialK - Thanks for the hysto link! Another question: other than rest, ice, and protein, is there anything else that can help to dry up JP drainage? I've exhausted the internet looking for anything that may help. Also, do you know if mastectomies on larger breasted women tend to drain more due to more empty cavity space? Just curious.

SpecialK

Indy - I have had a lot of drains, but I don't keep mine long - usually a week because I am apparently like the Sahara desert on the inside, lol! Drain production is linked to movement - the more you move the more fluid you get in the drain. Moving less could improve things but it can also be an artificial reduction. If the drain is pulled too soon because you were so quiet you can end up with a seroma due to fluid collection. Some people are just juicy, just like everyone has a differing number of nodes. I don't know that there is a connection with drains for prolonged periods and previous breast size. If you remove the tissue and skin your chest is flat so there is no cavity to speak of since your breast is external. Most of the physical insult in mastectomy is in the reconstruction because your pectoral muscle is cut and manipulated and a large foreign body placed behind it. Did you have skin sparing or did your surgeon place the expander and remove some amount of skin? I would be very careful with ice - you usually lose feeling at the surgical site and can damage your skin because you can't feel it adequately - use caution and a barrier and limit the time you use it. Don't put ice directly on the breast area, your skin is busy trying to form a new blood supply with your muscle and icing may inhibit that. Trust me, you don't want necrosis or skin death.

wpmoon

Pboi - it's hard to say because I had them during chemo. A week after my first one was my first chemo, then a few days later I broke out into a bad rash that presented like a combination of hives and acne. I don't know if that was from the chemo, the lupron, or both. I definitely had hot flashes, which is also a side effect of chemo. It's been hard to separate side effects from specific drugs/treatments.

molly1976

Has anyone started Tamoxifen yet? I started on Friday and have had no side effects so far. Does it take a while for them to kick in? I had some hot flashes during chemo but those seem to have died down and haven't started up again (yet?).

eheinrich

I've been taking it for about a month. No SEs that I can tell. I occasionally get hot & cold flashes but mostly only if I'm resting/sleeping.

pboi

Thanks Whitney! Hoping hot flashes/night sweats don't get much worse, since I'm still having them from chemopause. Start Lupron this week and Arimidex next week.

PB

IndyGal35

Special - I had a skin sparing, and the PS put an expander on both sides. I've got 300 mL in each side now, and I see him again tomorrow. I'm trying to rest the arms and chest using "T-Rex arms" as much as possible. I've heard varying protocols on what the drainage must be before the tubes can be removed. I know that the risk of infection versus the risk of seroma equals out at some point in time, but I'm not sure when. Thanks for the info though! We can always count on you. ;

SpecialK

Indy - most PS will not pull the drains until you are at less than 30cc/ml. What was your surgical fill? Are you getting fills with drains in

IndyGal35

Yes, he's doing the fills with the drains in place. My surgical fill (on 7/7) per side was 250m, and I got 50mL more on 7/16. Probably another 50mL heading my way tomorrow.