Starting Chemo June 2013!?!?!

Hi Everyone,

Congratulations to those done and those nearing the end of chemo.  I honestly don't know what I would have done without this group.  It has been such a good resource and support during this brutal phase.  We are survivors and warriors and have walked quite the path.  Still some journey to go.

Since my last chemo I've been gathering info and weighing my options.  I have decided against having radiation and will be having a mastectomy instead.  Primary reason is that as someone with an auto-immune disease, RA in my case, the risk for complications to my overall health are higher than most and it is just not something I want to do.  As my Dr. put it - my ongoing, primary health issue is my RA and this breast cancer thing is a blip along the way.

I am 100% confident and comfortable with my decision and know that I need the mastectomy if I don't do the rads based on the aggressiveness of my cancer.  Met with my surgeon today and am now waiting for a consult with a plastic surgeon.

I'm feeling good.  Ready for an 8-10 week break and then onto my next phase.  

Sending love and light and support to you all. 

Wow, Ocean, good for you for taking such an active approach in your health and recovery.  Curious - as person with RA as well - did you feel the radiation would be bad for the RA or just decided the mastectomy was the most proactive choice?  I had my mapping and tatoos for rads done today.  This crap is not easy - choices on which direction to go....

Best wishes to you and all of you on here....

Robin

My first Taxol I had horrible bone pains mostly in my legs from the knees down.  The second Taxol the onc told me to double up the pain pills for 48 hours when i start to have the pain.  that made a huge difference.

Alibeths, I'm glad you started this board.  I have learned a lot from this entire site.

Val--I also get bad hot flashes at night, also.  I know I can't take the hormones they would normally prescribe for this and I didn't bother to ask if there is anything else.

Netter & Val-- that's a real bummer that you have to travel so far for your treatments.  Hope they go by quickly for you.

I am taking Oxycodone.  I had been on vicadin but that wasn't doing it.  I start taking it as soon as I start to feel rough.  I usually don't use much pain killers, but by doubling up early, the horrible pain never got a chance to set in and made things tolerable.  Plus, after 48 hours I didn't need the Oxy's.  The difference was fantastic.

I have my consult October 4 for rads doctor and I'm still not convinced that I'm doing rads as well. I had a bilateral mastectomy and the rads will ruin the skin for my exchange on November 13. Not sure why rads but I'm thinking because I'm one node positive. I will listen to reason and than make my choice as well. I thought the reason I did chemo was to prevent this shit from coming back. I know they are going to say I need it and I do.t want to do it...,

Dlm, I know how you feel about rads. I keep waffling because I don't want to do it, but research shows a significant reduction in recurrence if you do both chemo and rads. I did make sure that I won't be getting a "boost" at the tumor site as that is what does the most damage. I may do the sweep over the chest wall. I did make sure that I have my TE completely inflated to keep my skin stretched during rads so that I can do recon. My PS told me he wouldn't do it for at least 6 mos after rads tho because the skin has to heal and it takes several months for the radiation to leave the body. He wouldn't attempt it immediately after because it will fail from radiation. I'd talk to your PS about that before you get started.

Well aaoaao I appreciate your opinion. And agree its just that I want to do what ever will insure it doesn't come back. Didn't your cancer come back in your spine. Well rads is to make sire it doesn't tcone back in the armpit so the spine wouldn't of been radiated. Hang in there all!!!

Over these bloody hot flushes!!! 

Over the peeling hands and scaly skin

Last chemo is on Wednesday, I've been living in a fantasy I think, thinking that everything will go back to normal but what is the new normal going to be?  Scars, anxiety, gross skin, hot flushes, blurrr, what's it going to be like after treatment?  I fear everyone around me will expect me to be my old normal - but I'm not my old normal anymore - anyone else feeling strange about the end of treatment, don't get me wrong I'm horribly excited about no more chemo, but I feel really unsettled about being post treatment.

Weird aye!

oh my gosh, every time we think we've won they call off the race - argghhhh!!  Great fun to watch thou.

My surgeon told me it was standard to remove about 12 during surgery but I happened to have quite a few so they took them out, seems to be the way in NZ but in saying that I have met other woman that only have a couple taken out.  Glad you loved visiting!!

I understand your tendency to second guess yourself, but just remember, we all have about a 20-30% chance of recurrence if we do everything exactly right. We all have to follow our hearts and research and make the best choices we can. One thing I've found out is that chemo doesn't kill the cancers stem cells which cause recurrence. Neither does radiation. Metformin and Curcumin do however and taking them during chemo is like the death blow to ALL of the cancer cells. I've learned to be my own researcher and my own advocate. Oncologists will NOT step outside of the standard of care even when they know it isn't the best treatment because the AMA holds them inside a little box. If they step outside that box, they could lose their licenses. This is why they don't offer up clinical trials and new treatments readily. Fear. Keep your chin up and read as much in new treatments and clinical trials for stage IV, there are a ton of them! You can beat this!

Sometimes no matter what we do cancer does come back.  However, don't live your life afraid of that because most of the time it doesn't return.  I don't want anyone to think I was encouraging people to make treatment decisions out of fear.  Please understand that each person is different and the side effects they experience are different too.  If the side effects of doing a specific tx are too severe and you don't want to continue, then you should definitely not do them.  Torturing yourself unnecessarily isn't going to stop cancer from coming back if it's meant to be.  Go with your gut, deep down inside you know what is right for you.  I wish you all well and hope that this cancer crap is just temporary.

Has anyone else had issues being really winded after tx? I was cleaning my bathroom yesterday and it felt like I was running a marathon. I was sweating, breathing hard, then started to get lightheaded so I had to lie down. I talk to the onc nurse (saw the head nurse instead of my onc who never seems to be available) she didn't seem to have any answers other than being sedentary and overweight. Really?? I'm concerned chemo is damaging my heart...

Im not out of breath but my chest hurts like if I had been coughing for weeks but no coughing. Talking to doc tomorrow

Dyvgrl - I cleaned my house for about 30 minutes Sunday morning and was in a full sweat and breathing like I'd just sprinted 5 miles.  I've read that it's a symptom of Taxol and what aaoaao says makes sense to me. 

Tomorrow is my last chemo!  Yay!  And yet somehow I feel like I'm losing my security net . . . ?

KatiAk - last chemo tomorrow, hooray! Welcome to the other side. The side where we are all wondering what to do next. Maybe shopping is the answer? lol. Best wishes for no SEs