TRIPLE POSITIVE GROUP
Comments
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tonlee when I was trying to decide on what type of recon I would do, I knew I would need rads, and the surgeons said if I chose TE's they would take some of the fluid out during rads and then re-expand when done. Dont know if he knew what he was talking about, but I was wondering if they decreased your expansion would it put less strain on your skin? I dont know anything about the TE's really just my brain over thinking!
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- TonLee- It still looks superficial to me and I don't think it looks any worse. It is not infected. It's just with Rads it is going to be a challenge to heal. I am glad you won't have any more fills. The revision surgery you had in April - was it just a scar revision? Or did they exchange your tissue expander? I am hoping it was just a revision of the incision and non healing open areas. If this doesn't get any worse- I think you will be ok. The PS may have you start wet/dry dressings. I feel better about this knowing that your revision surgery was in April and you had a longer healing time. I was especially concerned thinking you were only 3 weeks out from revision surgery. We just don't want it to get any bigger. I was happy to see you enjoyed yourself at the strawberry festival. It sounds yummy. Eating alot of protein will help this wound....Meats, dairy products, protein shakes, etc. It really does help. Keep us updated with what the PS tells you on tuesday.
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Weight Training - my 0T recommends light weights starting slowly to avoid LE - she says start with 1-2 lb weights and do 5 reps 2-3 times a day, if your arm gets tired - STOP! Then increase the reps and weights slowly, if you miss a couple of days, start back at the beginning. She also said that hot weather can trigger LE. She had a patient go to the Bahamas on vacation, no sign of LE prior to the trip, and she ended up in the hospital down there.
My PS said that even the TRAM would be kind of iffy because I had gall bladder surgery when I was in my early 20's, it was infected so they had to put in drains and..... which left a lot of scar tissue on my belly, that would cause problems with the TRAM. So...uniboob for me. I just wish I wasn't sooooo lopsided.
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Carberry,
My PS told my RO he wouldn't take any fluid out...(we're in a military facitlity and the PS outranks the RO)...that it was the ROs job to make it work...(after all they don't ask women with lumpectomies to "deflat" their real boobs, they just have to work with it.)
The reason behind it is because radiated skin does not stretch well..and if you have capsular contraction on top of it..you may never get that fluid back.
Chris,
I wonder if it was blisters?? Today I woke up and both were completely closed and that yellowish stuff was on the bandage..that stuff that happens when you heal.
Of course I have rads in 40 minutes so it may pop back open this week.
Thanks for your input, I really appreciate it
Oh and the revision was basically just to close the wound in a sterile environment...it was open my entire chemo cycle..over 6 months!
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Hi Ladies, Ton lee sorry to hear about you TE. I really hope they don't have to replace. I just got back from my weekly H and my Onc said that he is stopping me on TX. I have spent the last 2 weeks off & on in bed having trouble walking due to leg pain and leg heaviness.I have been able to get around a bit, but mostly when on percocet. He thinks it may be neuropathy but I am going to a Neurologist tomorrow to find out more. He is ok with it because I am node negative and still able to do herceptin TX 1 X every 3 weeks now. I am scared and relieved all at once. For the first time since this whole thing started I cried tears of Joy. Thrilled I would not have to have to face another 5-10 days of agonizing pain from Nuelasta. I have to admit, I was prepared to feel icky from chemo and BMX, but the most damaging part was the bone pain. At least I get relief from the meds from this new leg thing. I am not joyous about the higher risk of re occurrence and by definition this is truly bittersweet.
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Tonlee that makes sense, sometimes i just imagine "what if's" in my head,like I know what I am talking about. Your open areas look clean,and maybe its good that they keep draining a little so that stuff doesnt stay inside and get infected. I got little blisters all over the upper part of my chest that were itching like crazy from the radiation and the techs said that it was normal and I was right on schedule to start seeing those rashy type bumps.
NMoss so glad you will not have to endure that pain anymore. How many did you complete?
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Hey Carberry , I did a total of 4 TX. Sorry about the blisters, sounds very uncomfortable!
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NMoss,
I really think you received all the benefit with 4 txs. I'm relieved for you. Maybe it's just my take but you seemed to really be suffering compared to other people I've read....so I'm glad you're getting done.
IMO the Herceptin and Tamoxifen/AI are the real ways to fight this....
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nmoss - I agree with Tonlee - I think you are good with 4 - you are node negative as well. You can continue the H from here and press on. You were suffering too much - there has to be a point where you throw in the flag. Chemo is a necessary evil but you don't want to cause further, and possibly irreversible, harm. I am happy for you to be right where I am - all done with chemo!
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Hi ladies! thanks for the support I am just hoping this leg thing is temporary! Between this & the fatigue wow! It's a wonder any of us gets through it.
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I had my 6 of 6 treatment canceled due to neuropathy. I felt like I'd been given a death row pardon!
My onco says they hope to have you finish 80 percent of treatment. The drug Neurontin , has helped
ease my nerve pain. I have to wait until next week to get in to see the neurologist. I hope you get some relief. Karen0 -
TonLee,
I have been worried about you all day and I am so encouraged by what your PS has to say. And, I am relieved that your last surgery was just a revision to close open wounds and not to exchange your TE and start over with your fills. I am so very encouraged for you. I think there is a good chance that this is going to be ok. We will just keep our fingers crossed. It very well could have been blisters. Radiation does cause burns which can blister...but for now they have closed back up and lets not worry about it and just move forward. YAY! Hope all went well with your Rads treatment today. Happy thoughts!
Christean
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Tonlee, glad your blistering has healed. How far are you along with rads. (smile) They do ask lumpectomies to deflate. The RO said I had equal to a coke can of fluid which was in a spot that would prevent me getting a correct dosage. I nutted up after hearing this because I was afraid the boob would collapse. The bs wanted to let the fluid be absorbed and not drain it. He ended up draining part of it so everyone was happy. I was ready to get whatever the heck done to get the rads started.
I m glad all is well with your expanders and your blisters healed. Libraylil0 -
NMoss and All:
Today #4 was my last. My onc said the same thing, I'll be fine with 4 and shouldn't be any different for me since I'm node negative and no mets and my tumor was small. Herceptin is the key and I'm back on it and she and the cardiologist will be watching me very closely. My MUGA is still great and I'll them more routinely.
I'm so excited.......after the next few weeks, no more cold caps either. I'll stick to the protocol though.
Long day with blood draw, doctor appt, premeds, 90 minutes Herceptin, 60 minutes NASTY Taxotere, 30 minutes carboplatin so now I'll get set up to begin Radiation in a month. All the SEs I've been having, I think guided her to this decision too. I didn't push her at all and told her if she wanted me to stay with 6, I would so that makes me feel great.
Now waiting for the dreaded side effects to begin.
Good luck NMoss. Be well!
Arlene
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nmoss and Arlene - congratulations on being DONE with chemo! Herceptin will be a breeze in comparison. Hope you are both feeling well soon. Trust me girls, you will feel like your old self again!
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Congrats nmoss and Arlene!! I am in the chair for #5 today! June 28 can't get here soon enough!!
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Thanks Everyone:
Good luck with #5 and #6 KrsiKat....you are almost done.
It is actually kind of sereal being done with chemo. The chair is the easiest part of the whole process.
Gotta head out for Neulasta and fortunately thus far so SEs from it. But I'm waiting for the dreaded SEs from #4...each time has been different but only bone pain the first treatment.
Arlene
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Hi
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Does anyone know of a product called vivex and is it safe to take while on herceptin
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Chris and Libra,
Thanks. I saw my PS today. He looked at it...said to keep it moist (I use Mupiricen-sp?) and that he wasn't overly worried about it......WOO HOO!!!!
Hope that continues.
Chris thanks so much.....I really appreciate your feedback and it kept me from freaking out....lol...
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Arlene and NMoss-- so happy for both of you!!! My MO as well, feels that 4 tx are enough for node negative, small tumors, w/o any lymphovascular invasion. Although, I am getting Cytoxin instead of Carbo. Hopefully, one day very soon, there will be a tx for breast cancer that won't be so taxing on our immmune systems and bodies!!! and will kill it for ever !!!!
SpecialK-- The Claritan worked!! It did its Magic!! I had very little back/hip pain. I did take a few Percocets though for the abdominal pain, gosh can u get an ulcer from this crap!!! and ur BIL is right Mirolax is so much more gentler to the system.
TonLee: GoodLuck to you w/your reconstruction!! I am not a doctor but i had a friend who had an infection after reconstruction and her breast did not even come close to looking as nice as yours!! She also had a high fever and chills and felt horrible!!!
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OBXK and ArleneA - Yay - all done!
Kriskat - only one more!
Tonlee - Good news for you - relieved. Saw my PS today as well hoping to have the left TE in June but he wants to wait for at least on month - so July it is. My boss will be thrilled to hear I am returning to work for a few weeks only to ask for more time off!
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bucky - Glad for the Miralax and Claritin success - it is all about the management of issues at this point, and it changes from tx to tx. We will continue to advise you!
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SpecialK: Thanks so much. and don't work too hard!!!
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Hey ladies thanks for the well wishes! A best to those who are having bad SE. I went to the neurologist today and he thinks I may have myalgia? But I was wondering if any of you suffered bad leg weakness and muscle pain combined with fatigue after their TX? How long did it last? I feel ok except my leg muscles feel like when you work out to hard and I have zero energy. Anyone else experience this?
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nmoss - I definitely had muscle fatigue, like a burning exhaustion, that seemed to happen disproportionately to the level of exertion. Mostly on 4 & 5 but not yet on 6. I know LisaGH and dragonfly also had it pretty badly but they were both working also, so walking around more. EmilyinOntario from the Feb 2011 chemo group had it pretty severely from AC then Taxol.
bucky - I am not back at work yet - I have been off since Nov due to 5 surgeries then chemo - I go back on July 1 (maybe!) - still figuring it out. PS says no surgery until later in July, so it gets complicated...
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Hi Special K, how long did it last? I am going on week 2 and it's not subsiding at all! I work from home and make my own hours so my level of activity is not severe. I walk 2 miles every other day but not as of late. 5 surgeries? That's allot, your poor mind and & body. Thanks goodness you get a break!
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nmoss - yeah, 5 surgeries between Nov and Jan, then began TCH in Feb. As much as I would like to get my left TE back, I hesitate to start down that road again. That is why I have been off work this long. I am fortunate that my company had both short and long-term disability as insurance benefits, STD paid by me and LTD paid by them. I have two kids in college so every penny counts! The burning muscle thing would usually let up right prior to the next infusion - just like everything else - a short reprieve before the next lethal injection. I would just watch it carefully, increase your protein if you can, and because you won't have more chemo I would hope it will improve. I was walking too, even though it kind of hurt it seemed to ease it but I stopped as well after #5 - I felt too ill for too long after that one. Also I had node dissection arm swelling but it does not seem to be LE so far - just swelling from the Taxotere and seems to have let up - I am not having the web syndrome pain I was having. Keeping my fingers (no pun intended) crossed on that! I need to start back on my Livestrong thing - I keep waiting to feel bad after this final tx but it isn't happening to the usual degree yet...
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Started TCH Taxotere,Carbo,Herceptin today with steriods and emend. Round one of 6. So far steriods bothering throat.
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