February 2012 Chemo
Comments
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Hi everyone, I'm thinking about not having rads! Yes I know I'm mad but have read all the SE. I'm worried because they will zap my under arm it says you shouldn't if you have had surgery. Also causes more problems and my arm is stil not right.
Still haven't had my meeting with the doc but I'm thinking it's 50/50 if I have rads that I get cancer again anyway.
Also causes breathing and hart problems and more tiredness, DH says get it done but having this problem with my arm I just know it will get a lot worse.
Rads is a big thing I need some quality of life while I have it. I have given up drinking that shoud help. Also it's my left side which means I know it will cause hart problems, if there is a SE I will get it0 -
Ali, you have had such a rough time through all of this. My mom had rads after a lumpectomy 10+ years ago and suffered few short term SEs and no long term SEs from it...but everyone is different. We have such hard choices to make...
Is anyone still having hot flashes, if they had them during chemo? Mine are not as bad as they were during chemo but I still have them regularly all night. It's not the end of the world but I am curious to know if I will get a break from them before I have to start the hormone medication.
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I am so worried about my arm i know it will make it worse and i can hardly use it now. I can dress myself but it is painfull also i went to grab something and my arm pulled it wasn't good. Maybe i won't need rads to armpit as all the nodes are gone.
All the family say i should have it but i've had enough of pain and i know it will get worse with rads.
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christina0001 - I didn't really get the hot flashes during chemo..or if I did, they were not that noticeable. I have seen a steady increase in them thru rads and now that rads are done, I am noticing that thru the afternoon, it seems I get warm here and there for no reason. There is no mistaking the nightly sweating....I am not looking forward to tamoxefin kicking them up a notch.0
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Christina - I'm still getting them, but not as severe. I will start tamoxifen early August and was wondering the same thing.
Ali - is the arm that is bothering you from the ALND or the one that was impacted from chemo infusions? If it is the ALND one, it took a long time for mine to heal - like 3-4 months until I had full motion back. It is still partially numb. I have no opinion on rads to offer you
except I'm sure they suck.....but so has everything related to this b%<#t of a dx!
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Ali- I too still have issues with my arms from the surgery. I can get dress by myself now but only can wear certain shirts still. It does hurt my left arm a lot more than my right to pull or push things.. even opening my dresser drawer! It IS getting better than it was but still painful. Might want to talk to the dr about PT maybe? Let them know all your concerns and then make the right decision for you. A friend of mine had rads and said it was SOO much easier than everything else. the only side effect she had was being tired.
Christina- I still get hot flashes and i stopped chemo May 17th. I was pre-menopausal so i wonder if that plays into effect. My dr. said it takes 2-3 months to get the system back on track to where it was before.. right in time to start the tamoxofin!
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Obsessing over reconstruction options again today. I plan on making a consult appointment (or two) tomorrow. I did this a couple of weeks ago...obsessed on Sunday, Monday morning scheduled a consult appointment, and then got scared by Tuesday or Wednesday and cancelled it. We'll see if I do the same thing this week. lol
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yes ALND i had 32 nodes removed so i have a higher risks of problems and rads will make it alot worse.
Christina- i really feel for you, this shit is so hard.
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Christina- I completely understand!! I know when going through it all I was fine until I threw in recon.. Then I felt so overwhelmed and scared. I did it at the time because I thought I had to make a decision BEFORE my surgery. AT that time we all thought I would have to have rads too. Luckily now, my PS said I couldnt do any recon until 6 months after Rads. I was upset but now see it as a blessing and it gives me more time to figure out what I want to do. I am thinking about putting it off until next spring even. The thought of another surgery scares me to death! Take all the time you need and when it feels right for you, you will know
Prayers for all those going through tough times right now.
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Hi Everybody, hope your weekend has been relaxing--we went to a minor league baseball game to day that was 14 innings long, but we bailed at the top of the 11th. Hot day to be outside that long, even if we were in the shade.
Ali, if you had all those nodes removed, they probably won't radiate your underarms--they didn't for me at any rate, as there was nothing to zap! Now if they want to do your supracavicular nodes, that's another story. Radiation was very easy for me, but everybody reacts differently, and then again I'm still not sure if the LE from rads is going to resolve or if I'm stuck with it. That's definitely something to think about.
As for the post surgery pain and tightness, it does last some time, and physical therapy helps a lot. I found that rads did make my scar tissue tighten up again, but I had my surgery in December and Rads started June 4th, so there was more of a wait.
Christina, all this ongoing decision making gets so exhausting--maybe thats why I'm kind of ignoring the recon question at the moment, b/c there's nothing I can do about it right now. I have to wait six months, too, and then I'll probably put it off till Spring b/c no way am I missing another ski season.
Forgot to add I'm still getting hot flashes, too--happy to have them, I want the menopause to stick! Although I'm not too thrilled about the idea of them getting jacked up by the Tamox...
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Hi everyone,
A couple of questions- has anyone had feelings in their feet like there is a cell phone vibrating in them? Its not painful just really annoying. It "vibrates" for about a second then waits for about 5 and does it again? Any thoughts?
Also has anyone noticed a change in their skin since chemo? My arms and chest seem a lot more bumpy?
Other than that things are going pretty well. Getting frustrated as I still can only sleep on my back and I am sooo longing to sleep on my side or stomach. I will start back to work this week part time and then back in full swing next week. Hair is starting to grow back.. of course in all the places I didnt want it to begin with!
I hope everyone is doing well. sending out lots of hugs!
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Ali- It's a tough decision on RADS. I assumed I was having them. 2nd opinion says no also. The decision is not cut and dry like chemo. The docs all say its iindividual. Based on grade, stage, size, where tumor is located, node involvement, etc. Some questions I asked was how close was cancer to chest wall, what are the se's since mine is on left breast, and how much does it lower my reoccurence. Does the risk outweigh the benifit? I had a bmx 1.6 cm tumor in 1 node involved. RO said it only decreases reoccurence by 1-2%. Higher risk of heart disease and implant problems. Hildy mentioned a technique where you hold your breath during RADS. I've read alot about this and it sounds very promising. I will tell you that if the RO wanted me to have RADS I would have. I'm trying to fiollow all the doctors advice but I also tend to question everything. I had 17 nodes removed. Left underarm and upper arm still numb. BS said can take a year to improve. Good luck!
Christina00- I dont think I had hot flashes during chemo. I think my hot flases than were from steroids. BUT NOW, GEEZ every other night I'm having hot flashes. I also have had a few episodes of night sweats where the bed and me were drencehed. I told DH this morning that he has to get the cac fixed. He told me the problem was me and not the ac. I think he's right!
Firstcall- in re to patient interaction, I have the same problem. Sometimes I think its me though. I'm a psychotherapist and since my bc I tend to lack sympathy for my patients that are crying over mundane things. Honestly, there are days I'm sitting at my desk and I can here myself say " what the hell are you crying about? I'm the one with cancer!". I definetly need to work on the sympathy department and remember that things affect all people diffrently.
Wish me luck guys. Going in for TE surgery tommorrow.
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Dipad, good luck and thanks for info. Went to cancer centre today and they said I had to be very carefull with my arm and rads. They said I would need pt between rads so I'm going on Wednesday and will get this sorted out. Also read about a woman who had rads who has urticaria like me. She has stopped rads and she came out with hives so I know I will get that as well.
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ali...I had nodes removed...have LE and had 16 rads....the RO did NOT radiate the axilla and my LE is the same as before the rads. I had no SEs at all from rads! Hope that eases your mind somewhat.
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dipad-hugs!
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Dipad, thinking about you, good luck tomorrow.
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Oy. Dipad. Wishes for a successful easy surgery and recovery.
Susan
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Good luck dipad! Thinking about you!
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Good luck Dipad!!
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Thanks Jen, Ali, and Hildy.
Jen I wonder if the bumps are little body hairs coming in?
dipad - a/c does help with the hot flashes!
Good luck with surgery tomorrow! Be sure to let us know how it goes!Ali, you have had such bad luck with everything so far, maybe rads will cut you a break. I sure hope so.
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Thinking of you dipad! Prayers for all those involved with your surgery and your care pre-op and post-op. prayers for smooth surgery and recovery.
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I have coloured my hair again with henna and it looks better.
I got a letter this morning telling me I have a meeting with my onco and rad doctor next Monday.
Going to hospital tomorrow for check up with arm, will see if there is a problem.
My oldest daughter is home from her travels from work and a music festival. I love her home as she tells me all the gossip and where she's been.
Feeling a bit better today and not so worried about rads.0 -
Ali, glad you've got some time to relax.
For folks asking about reconstruction, here's a teleconference coming up:
http://lbbc.org/Events/2012-08-21-Breast-Reconstruction
And an FAQ page and a doctor contact about reconstruction:
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Hi all! Its been ages since I've posted, but I've been trying to check-in regularly to see how everyone is doing. Congrats to all who have finished rads and chemo!! So happy for all of you. For those of you still going through it all, I am so sorry for any issues you're having. I am not even going to attempt to address everyone's posts as its been almost 2 months since I posted.
Things have been going OK for me since my last treatment on May 17. I'm working absolutely full time since the end of May - actually threw myself back in full throttle and traveled every single week of June and into the first week of July. That was WAY too much and just thoroughly exhausted myself. I've slowed it down since then. Have been trying to get back into a regular exercise routine, but that's been difficult with work and the tremendous heat we've been experiencing. Before this all happened, I got up at 5AM to work out, but now I'm still too tired to get up that early and just can't find time throughout the day to do it, so right now, its relegated to the weekends. The most frustrating things I'm still facing are still being tired and the muddled brain has yet to clear. Other lingering effects - nails still discolored and veins are shot (its so hard to find one to draw blood from!). I've been on Tamoxifen for about 6 weeks now. I'm also in a clinical trial to see if the diabetes drug, Metformin, helps prevent recurrence, so I may be taking that drug too. I got my port out on July 5 - so happy to be rid of that!!
My comments on some of the issues raised:
Hot flashes - I started having them towards the end of chemo and they have greatly increased since I've been on Tamox. They tend to be worse/happen more when I'm already warm, so this weather is not a help! I've been told that both Black Cohosh and Omega-3 help, so started taking them last week (so far, no help though!).
Hair - My hair (head and eyebrows) actually had started growing back after my 5th chemo, but then fell out again after the last one. Now, everything is growing back; actually back to shaving my legs and underarms again. My new picture is what it looks like now. This week, I finally decided to no longer wear my scarves. I've had some compliments on my "haircut" too!
Skin - Jen, I too think my skin looks kind of bumpy. Its still pretty dry too - particularly around my nails and my feet.
Drinking - I am not, nor have ever been a heavy drinker (well, except for college!). I have not given up drinking either (actually had a few during chemo). No one really knows why we all got BC. I, like many of you, led a very healthy and active lifestyle prior to getting cancer so its hard to come up with what exactly I should change. One MO I met with from Johns Hopkins said that drinking is a very small risk factor - she said that, as a doctor, if I wanted her to recommend something, then she'd say stop drinking, but she wasn't really serious. Anyway, that's not going to happen - I enjoy my wine and beer!! Seriously though, one thing I do think may have been a factor is stress, so I'm really going to work on reducing the amount of stress in my life.
Other Tamox SEs - I feel a lot more achy these days; I was told it could cause joint pain. I have a lot of vaginal discharge (sorry, maybe TMI for Firstcall!!). And, unfortunately for my DH, diminished (or really non-existent) libido. I guess I'm pretty much in full fledge menapause!
One other strange issue I'm having is one of my TEs is deflating. I went to see my PS last week and she has no idea why its happening - she said that if there were even a pin prick hole in it, it would have drained almost immediately. So, for now we'll just keep an eye on it. We went ahead and scheduled my reconstruction surgery for November. I'm having DIEP flap. Gritgirl, I know you had once thought about having that procedure too - what are you thinking these days?
Anyway, sorry I didn't touch on many of the other issues/questions posed lately. Just so happy to continue to be part of the discussions!
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ymac: good to see you back and to hear that you are going well.
i still am looking at BMX with DIEP reconstruction. will be meeting with plastic surgeon in a couple weeks. won't be able to do surgery until cancer is off liver and stable for a few months. on chemo break now but will be back on chemo likely in September. so my surgery won't be for a while. such is life.
susan
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Ymac- you are looking beautiful! So glad to hear from you!
I too think stress was a big part of this for me. I used to work a TON and traveled a lot all while my kids were still young. I felt like I missed a lot. I have sinced switched jobs and have a much easier work load and people to work with. Life is too short, take care of yourself!
Let me know what you find out about DIEP. I am considering that next spring...
Ali- glad your daughter is home
Good luck with your appt tomorrow. I have mine on Thurs and really really hoping she says I dont need rads after all.0 -
Especially addressed to pejkug3:
You sound like you're the only one that's ahead of me in this chemo/radiation sequence - and that you might have some information that I'm looking for. Hope you're still watching these posts. Chemo wiped me out, with some "uncommon" side effects that may not be relevant here. For only about a 3% statistical advantage from chemo for postmenopausal women, I would probably not do it again - even for estrogen positive cancer (only 2% gain if estro negative!).
My question is about the radiation - which starts tomorrow. The Moss Report (which has been my single best source of trustworthy research and information, seems to suggest that radiation under my scenario is of dubious benefit for the possible negatives. PLEASE let me know ASAP about your experiences and why you didn't feel good about it. The doctors (Kaiser) seem to have just put me on a track that addresses the cancer, but not the fact that the treatment may kill me - or result in irreparable harm and maybe even CAUSE a subsequent cancer.
Thanks,
Brady
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Ali - how did things with your arm check-up go?
ymac - so good to hear from you! Sorry your TE is deflating! Not good!
Susan - I'm very interested in DIEP - please post how your consult goes!
Jen - Good luck with your appointment Thursday. Crossing my fingers for you that you don't have to have rads.
Loving my head fuzz. Have quite a bit of very light, fine hair under my arms, probably close to 1/2" long, but I can't bring myself to shave it off!
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Anyone taking Anastrozole? Got it today to start taking but a little nervous about starting. Don't want more SE.
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anybody lost toe nails?
my big toe on my left foot is killing me......the nailbed hurts.....
???????????
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