Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Mellie: What is an L-Dex reading? I too went for a lymphadema assessment but didn't have any specific tests this time. Two years ago after BMX they measured my left side & diagnosed mild truncal LE. Good luck with Rads.
I have my 2nd round of Cytoxan & Adriamycin on coming up on Wednesday. The SEs with this have been mild compared to the Taxotere/Carboplatin/Herceptin I had in the spring & summer. My onc was surprised since he usually finds AC is worse.
School Counselor - I try to get blood & see my onc on Monday & I get my results then. This way there are no delays on Wednesday infusion days.0 -
For the L-Dex reading, the physical therapist attaches some electrodes to the two hands and one foot and passes a very weak (you can't feel it) electrical current through your body to measure how it is conducted through your arms. The electrodes on the arms are switched at some point for a second reading. It gives an idea of whether extracellular fluid is accumulating in the the affected arm. There's a normal range and elevated range. You would be assessed as early stages of lymphedema that need some treatment (massage and compression) and monitoring if your reading rise out of the normal range or, as in my case, there is a 10 unit increase from a previous reading (even if still in the normal range).
I don't know what they would do for measuring truncal LE. My arm was being measure for LE risk assessment and this was just a follow-up appointment - not that I was showing symptoms of swelling. I'm flying home (California to Toronto) about a week after I finish radiation and I'm really worried about triggering full blown LE with the flight now.
I never knew about the steroids affecting blood counts! Good thing I was going in the morning the day before chemo shortly after taking the steroids so they wouldn't have time to do anything.0 -
Mellie289- i do not have LE but do fly with with an off the shelf sleeve and hand gauntlet. I discussed getting the sleeve and gauntlet with my BS. Although he didn't think that I would develop LE because I had 5 nodes removed, he said it would be fine if I got the LE gear. i was measured at a medical specialty shop nearby and bought a sleeve and hand gauntlet with the minimum compression. It is advisable to purchase both a sleeve and hand gauntlet or glove since wearing the sleeve alone can cause LE problems. If you want more info about LE and info on flying, go to the Step Up, Speak Out lympedema website http://www.stepup-speakout.org/ and also read the BCO discussion forum on LE. There are some very knowledgeable women on that thread who have been very helpful to me.
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Hi ladies-I will be joining you soon. Met with MO today; onco score 21-intermediate. I am going to put my big girl panties on and do the best I can.
I appreciate your advice and input that I have read so far. I may be starting treatment as early as this Tuesday (one wk)...will get my hair cut for donation; already have a wig picked out...will get some beanies to keep my head warm, wig caps, sleeping caps. I have a list for chemo stuff, but I'm sure I won't have everything. I am so not looking forward to this; Dr said, if for some reason, I can't tolerate it, she will be okay if I chose to stop...
I know I will get through it, but wish I didn't have to!
((HUGS))
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keepthefaith!
We have identical type/size and oncotype- wow!
I started Tc on 14, justam feeling better today and hungry again without nausea. Its been 5 days with flu like symptoms and general malaise with water making me ill- very hard to get down and they tell you to drink a ton.
I am going to get a port/which I was VERY against because I have a raging infection in hand and arm where they infused the meds, so that is my biggest complaint today, although I have also had weeping and sadness the last few days and now got my period today.
When it rains it pours!
Anyhow I thought that score hard as well as its on the not sure if chemo beneficial side/ but I knew if I didn't do everything available and it came back I would wish I had... so that's why I am doing it and it sucks but what else can you do???
This site has so many positive great women and they are all suffering through it and very helpful with emotional support-
welcome and sorry you are in this 'club'
but better than not having an option and getting hit by a bus right?0 -
day after SE's aren't horrible so far... My appetite was great yesterday --- was very sleepy/lethargic all day night tho I did manage a 3 mile walk. Slept like crap and woke up feeling queasy - went back to sleep and woke up shortly after still queasy so I took an anti nausea pill... So far ok today - went for my Neulasta shot and took a Claritin. Saw a chemo nurse that treated me 7 years ago who berated me for not having a port - was totally berated yesterday by a diff nurse... So much for a compassionate bedside manner with healthcare professionals dealing with cancer patients
grrrrrr
Hope everyone is hanging in there........0 -
audra, thanks for the post and info on your SE's. Very helpful. Yes, I was of the same thought...I don't want to be on this road tens yrs from now with a Stage IV DX, saying "what if"? My MO was very nice, did not push me, but gave me some things to think about. She said that 95% of her patients say they wouldn't want to do it again, but it wasn't as bad as they had anticipated...Yes, better than not having an option!
I do have a port already and am glad I got it done. Got it when I had my LX and SNB bc my biopsy path was leaning towards chemo, even though my surgical path showed it to not be quite as aggressive...
The port gets in the way of my seatbelt sometimes, but other than that, it doesn't bother me to sleep on it or whatever. I really have forgotten it is there. I'm sorry you are having problems with the injection site. I hope it gets cleared up soon.
I am post-menopausal and have had hysterectomy/oophorectomy 8 yrs ago, so no more of that stuff for me, thank God. Don't miss it one bit. I know my moods will be bad enough going through this anyway. I was tearing up earlier when I told my daughter about my decision to have chemo, but I want to see my grandbabies graduate and maybe even get married! It's so hard to explain this to your kids when they are so young and not in your shoes. I have to do the best I can and not look back! I think the follow up care would be much more stressful for me also, if I don't do chemo. The constant worry, etc. At least this way I can say I did all that I could do! Maybe it will give me some peace of mind.
I know there are so many others that have it worse than I do, but I still feel like having a pity party!
Where in Texas are you? I am close to Austin.
((HUGS))
Terri
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Virginia, It sounds like you are on top of things as far as heading off side effects. I hope you are feeling ok and getting some rest. i have a had a couple berate me for not having a port. I told them point blank that needles do not bother me and if they have trouble finding a vein or starting IV to hand over the catheter, and I would start it myself (I am a paramedic). They say nothing after that. Only one or 2 people have commented at all, and most who go on my chemo day also do not have ports, so it is not outside the norm.
Audra, i hope your infection is clearing up!
keep the faith, Welcome. Sorry you have to be here. There are lots of great women here. we all support each other to hold each other up through this journey. i will get treatment number 4 on Friday. i will find out that day if they are sticking with their plan for 6, or changing it to 4. I had a 2.0 cm tumor. I do not know my oncotype, but will find it out then.0 -
Kbee - thanks for the encouraging words. Sometimes I feel invisible when I post on another board lol. It's nice to be noticed here
xx
I pulled my old wig out today - it's been sitting on a shelf in my closet for 7 years.... I wanted to cry...it looked terrible but I think it's bc it has been in a shoebox for so long. I washed it and hope I gate it less lol. I am thinking of buying a new short pixie wig from the TLC website. I am actually going to a Look Good Feel Good seminar on Monday.....
Was very windy today so I skipped my walk. Will force myself tomorrow lol0 -
oh and I love your response to the port--- I think they try and bully you bc a port makes THEIR job a piece of cake. Just bugs me they lack compassion. I guess they are desensitized... I won't back down though....I'll dig my heals in....
Also did u mail order your wig or get it in a wig shop??? It's very beautiful!!!0 -
Virginia, you are spot on with the port. It makes their job easier...it does not save us any pokes! My job is not to make their job easier! My job is to advocate for what is the best choice for me. Not having a port has its risks, but ports are far from risk free!
I got my wig from voguewigs.com. I love that web site because if you look in the comments for the wigs, a lot of people post pictures of themselves with the wig. that helped me pick one that would look good on me. All of the wigs look good on models. I needed to see what they look like on plain janes like myself! Their shipping was very fast too. I also have a halo wig that I occasionally wear with a hat. That was a freebie from a friend.0 -
kbee Virginia-
I agree it is easier for them with ports but after this hand/arm incident
I am going to the dark side and doing it for the next 3! My arm is hot and red and sore and i;ve been to the onc every day this week and tomorrow is blood draw day and dreading anyone touching my arm let alone drawing blood...wah wah wah...
my typing is bad because I have to keep ice on the arm 24/7! arggghhhh
I got my wig at vogue wigs also and was pretty impressed with quality- not that I can tell but it doesn't seem totally fake looking...
I finally felt nausea free today and ate a lot including pizza which now my stomach is rumbling from so maybe not best idea...but it actually
'tasted good' - to feel 'normal' again...sigh0 -
keepthefaith-
I'm by Dallas and glad to just have 3 more...now wondering how to deal with wondering/worrying about it ever coming back??
I guess it gets easier with time but now I tend to panic at every Dr call just since this diagnosis...hope it gets easier..0 -
Audra, It is definitely not the dark side getting a port! You have to do what's best in your particular situation, and if i had that happen, I would likely do the same thing! I hope the port surgery goes well. Some people swear by them and love them, while others love not having one. I just dislike the nurses and lab techs who come in and sigh like I am making their day rougher because I do not have a port. When I was 9, I was in the hospital for 2 months and had blood draws daily and IV changes every other day. Ports were not used then apparently, so I laughed when they said it would mean 6 IVs and asked if that would bother me!!!! When is your port surgery?0 -
audra, I guess we just need to take it one step at a time:). Easy to say, hard to do. It seems weird that it has been 2 months since my DX and sometimes wonder if it has sunk in yet...Sorry you are in so much pain! Will they let you get your next treatment on time?
I am getting a wig from a local wig shop in Austin. Kind of pricey, but I have a not so common hair color and texture, so I found one that matches pretty closely. I don't want to totally freak everyone out! Will get a short cut Friday, donating to the only place I could find that takes grey hair.."Pink Heart Fund". I am dreading the hair loss, but it is what it is. I am feeling over-whelmed again after my break from surgery. You all are making it a bit easier for me, for sure! Thanks!
kbeee-good luck with your treatment on friday and on onc results. Wouldn't it be nice if that were your last one?:). I wonder what difference it makes, 4 or 6?((HUGS))
Terri
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I don't have a port either and hate needles. My veins hide when I get to the infusion center. The nurses manage to find the veins and am glad I don't have a port. Something to remind them is to flush the vein for many minutes after the chemo. The first TC my skin got burned and still have marks in the veins, they got damaged. A friend who is a nurse practitioner told me they will heal and not to worry, but also not to touch them. That happened because the first nurse (every time is a different one) didn't flush it enough. I think they flush it for five minutes. Just fluid with no additional chemicals. For the second TC I have a burn on the skin, but no marks on the veins. The third TC still nothing.0 -
totally 1000% agree with the comments RE the port. If I were in ur position I would get the port too---most important you get the chemo done with as little discomfort so you can put it behind you
I do really just feel like my nurses were trying to bully me. I am now regretting not having my chemo in NYC (where I did my surgery)...they are way better than the local medical group. But I figured poison is poison that it would be fine to do it locally- just wish the nurses were nicer....
This could all be pms talking tho!
I just tried on my newly washed wig and it was so poofy and fluffy I thought how the hadie heck did I wear this thing 7 years ago???????
I will check out the vogue wig site.......
Thanks ladies for "seeing" me....
Hugs and love to all of you!!!!!!0 -
Wrenn, it sounds like you would be the perfect candidate for a port! I have huge, easy veins. Since your veins can be challenging, do make sure that they draw back blood once in, to make 100% sure they are in. They did that on my first but did not on my second, and it did burn near the end, and did burn my skin and give me a rash. My MO was mad, and told me to make sure i showed it to them! They drew back again on the third one, and i will be sure they do in future treatments. The chemo nurses are good with IVs though, but some are better than others, so if you tell them you are a tough stick, they should find the best nurse. They all know who their go-to person is.
Keepthefaith, when I met my MO and set up the treatment plan, it was 2 days after bMX, and we did not have the results saying I was node negative. He wanted to be very aggressive because of my age, and set me up for 6 treatments. Once I learned I was node negative, and realized that the standard of care is typically 4, I pushed the issue a bit to find out the risk/benefit of 4vs 6. i am very concerned about neuropathy, because it could be devastating for my job. He finally agreed to do the oncotype, so we would have all information available to us to make the decision. I am planning on 6, but would be pretty excited if he said 4! It is hard not knowing, because it puts you in a different place mentally going in for your 4th of 6 versus going in for your last! Time will tell. I hate suspense!!!!0 -
kbeee, I would love to push my MO to do the oncotype but he said no, grrr. We will see, unless you have a suggestion on how to convince him it makes sense to have it done now that I am dojng a chemo treatment.0 -
Wrenn, If I start next week, you will be one day ahead of me..I hope you don't have problems with the veins.
I have always healed well, so I never thought twice about having the port. Don't mind pokes and IV's as long as the person doing it knows what they are doing!:).
We've got this!!!
here is poem I wrote shortly after being DX'd:
Breast Cancer
Steals my hair, but not my heart,
Steals my looks, but not my love.
Steals my time, but not my hope,
Steals my strength, but not my faith.
Steals my work, but not my friends
Steals my thoughts, but not my prayers
Steals my sleep, but not my dreams
((HUGS))
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keepthefaith - that's really really lovely! TY for sharing!!!0 -
keepthefaith, love it! Thank you for sharing!0 -
Keep the faith, I love that!!! Can I share it on my FACEbook page.
I have a picc line not a port, did not want to have unnecessary surgery, but also have TERRIBLE veins!!!!
I bought a few synthetic wigs online, got two free ones and today, got a human hair pricey one and I hope insurance covers a lot of it, it covered $200 thus far. Going to a salon tomorrow to get it cut shorter
Virginia a 3 mile walk good for you, I dropped out of the gym after diagnosis and have not been back. I'll walk around the block but definitely not 3 miles!!!
I running around cleaning and organizing in anticipation of thursdays chemo being exhausting
Hope everyone is hanging in there!0 -
keepthefaith, love the poem!0 -
SchoolCounselor - I had to give up my gym membership bc my gym is at my office and I am on ST disability.... I am bummed bc it's starting to get cold...was really windy today and I'm not keen on cold weather... I am hoping to walk tomorrow tho - I'll just bundle up...... I say that now - we will see if I do it lol0 -
Of course you can share. Yes, I agree, Virginia-good for you for the 3 miler. I have been walking 20-30 mins almost daily. I think I need to step it up a notch! (or two)
Headeast, your DX and menopausal stage may have been a factor in the Onco being a good tool for deciding your treatment...not sure, just sayin'.
my insurance (Aetna) won't cover a hair prothesis...go figure.
good night ladies~
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Huh, Aetna covered mine. How weird!
Virginia, I have good intentions every day. Today was so windy and cold, my intention evaporated. I'm on shirt term disability too. Thank God I have a policy!
Thanks keep the faith!!!
Head my oncotype score. was 12 and my MO and Sloane Kettering second opinion both said chemo. So here I am. My age, 44, played a major factor.0 -
school- I went to Sloan too for my surgery and recon. Met with the same MO I met with first dx, but elected to do chemo in NJ for convenience. Are you doing your chemo at Sloan? How are the nurses? As mentioned my local has been ehhh and I am kind of regretting not doing my chemo at Sloan0 -
virginia, I only went to Sloane for my 2nd. I did everything by me I really liked my PS and BS. My MO is kind and responsive and his nurses are fun. Sloane seemed so big. Although I liked the MO there, I wanted to be close to home.0 -
Virginia, I went to Look Good Feel Better this week and really enjoyed it. We got a bag full of really nice make up and some great tips for make up, scarves, wigs, etc. I learned how to draw on believable eyebrows, which was perfect timing since I lost almost all that were left last week - 8 weeks after my last chemo! Hope you have a good experience too.
Headeast, my numbers are almost the same as yours except I didn't have any positive nodes. My BS ordered an oncotype, but when I met with my MO a few weeks later he questioned why she had ordered it. He said with a 4 cm tumor he would recommend chemo anyway. So to him, the size was more important. (I ended up in the gray area - 19.) Then the next time I saw my BS, she questioned why I was having chemo with only a 19! I really wish they wouldn't do that kind of stuff that makes you wonder if you made the right decision.0
