Chemo in Sept 08
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Those blow up pillow things for your feet or legs are called compression boots or sleeves, and by law, since your insurance paid for them, you should have been able to take them home AND bring them with you if you have another surgery. I have two pair, and I took them with me every time I head to the ER because I never knew when they would admit me when I had that pesky heart trouble.
Genia, darlin'... I put you on our massive prayer chain tonight...don't fear...trust. Be still. He's right there. Love you, sweetie.
Robin
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Genia, you have every right to be confused and upset, just take your time, think through everything you want to do and then do it, your way. If that means both breast then go ahead.
I was in a very similar situation to you, I had 6 x TC every three weeks, this was supposed to shrink my two nasty lumps to make them easier to get out as I only wanted a lumpect. After the 6 doses both the oncol and the surgeon said that the lumps had completely gone and wrote down, complete response. I had the surgery and when I got the path report, I still had some active cell in both lumps and still in 10 lymph nodes. Althought all those things were taken out during surgery I was told to have more chemo. My initial reaction was very much like yours, I cried and said NO I am not having any more chemo!, but a few minutes later I thought about it and decided that if there was any chance of one single cancer cell being left in my body then I wanted them DEAD and GONE. 10 positive lymph nodes put me at stage IIIC, which was pretty scary. I started extra chemo the next day, 4 x FAC, my oncol said he wanted to make sure he would never see cancer in me again. I know it is hard to hear, but I am so glad that I had more chemo and would always recommend it, just to be sure! Just my opinion, and you may not have to have any more. Fingers crossed. Take Care. Singapore Chris x
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Thought for the day
"The turning point in my life has come. I am open and receptive to living a life a love"
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Genia hon, great big HUGS to you!
Just want you to know that you've been in my prayers. As Robin said.. Be still and know... even though you may feel out of control and that you can't handle things-- The Lord doesn't and he CAN. Rest in Him. Rest. heal. take a breath.
I know that you haven't made up your mind about reconstruction yet, but I wouldn't hurt to go ahead and meet with a PS anyway. It would be another opinion and he'll be able to give you a much better idea of what is possible.
Don't mean to sound preachy, but I luv ya!
Lei
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Genia, OK me projecting again, but I love you girl, and can't stop! Whatever you decide, we're with you! But, I honestly think you should have both off in one surgery, then heal up, and get another port or whatever else later after you are on the other side for the Herceptin. Also, Genia, make an appt with your ONC. I had a 3.5 cm tumor left after chemo and surgery, but it had "melted" maybe about half-ish or less, and I didn't need more chemo... (I guess I had a partial response).
I'm with Colleen, we need to check in on Julie. And I keep thinking about Trude too. I think we need a phone number posting or swap or something.
Spring...
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I met with the PS today......a very good one at that!
His opinion is like mine.........they both need to go at the same time. He doesn't want to do the reconstruction until they know if I am having RADS or not. If I have to have them.....he wants to wait and do the recon afterwards. He is going to talk to my surgeon about all of this. He said the port would not be a problem in his opinion. I told him I would rather have them both taken off with one surgery. Then if I want recon....I will have that done at a later date.
He told me........which I already knew this.......that the ILC almost always mirrors itself in the other breast. And there is no way he would leave that breast there........
I think that is a great idea Bev......the phone number list. I lost my address list because my computer crashed and I had to reformat it. I'm worried about them too......
Thanks Lei for your sweet advice.......love ya girl!
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GENIA, YAY!!! A VOICE OF REASON!!!!!
(sorry I am yelling but honestly, this makes so much sense to me!!!!)
One thing you could ask, a lot of ladies have rads with the expanders in. So it is possible to have a bilateral mast, put in the expanders, and go through rads. But, his way is safer, it just mean you go for a period with no tatas.
I have posted on Juli's and Tanzie's FB walls.... I am thinking about both of them!
Spring.
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Genia,
Herceptin will only be once every 3 weeks. Don't you think you could just get an IV for that? I know that is what I'm planning to do. The PICC is being pulled as soon as I finish my weekly Taxol. Getting stuck once every 3 weeks seems doable to me.
Colleen
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Don't have to have the TATAS Bev.....lol
That made me laugh........love ya g/f
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Colleen....we were posting at the same time.
My veins are awful........the only ones they can use to get blood is the ones in my hands and my Onco said those wouldn't hold up for Herceptin.
I want this surgery over so I can get back on the Herceptin. I know in my heart that drug did more good for me than any of the chemo drugs. Well maybe not any of them....but it sure played a big part in shrinking this sucker!!!
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Has anyone developed swollen ankles/feet AFTER completing chemo, particularly Taxol? Ever since Friday, my usually skinny ankles and feet are like fenceposts! I've done some research, and it looks like that swollen ankles/feet are a side effect of the steroid and/or Taxol...both of which are still floating around in my big, fat body...everything I've read says to stay hydrated (which I do) and rest (which I do) and that in a couple of weeks, the swelling will go away. Geez Louise! Does the fun ever end? That's just my biotch for today...:)
Genia... I sent you a private little note...
Love you girls...
Robin (with the sequoia tree sized ankles)
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Genia,
Bad veins, then you will have to have something. Ask about the PASSPORT.. I've know a lot of women that get them, mostly due to not having a scar on their chest
. Seriously it is a port, under the skin, and I'd think they could put it in at the same time you are getting your mast. It is just one less thing to have in your chest, and I think that would be a good thing.Another thought about getting an expander. I was told by my onc and a breast surgeon that having the expander placed prior to rads gives a couple things.
1) You can do a skin sparing mastectomy
2) You can get fills before which helps stretch the tissue before radiation. After radiation it is much harder.
3) The expander gives a little buffer for the radiation beam. It raises the chest muscle away from the rib bone, so not as much radiation to the bone.
Just some thoughts. I had a single mast with an expander. I can't say that I love my expander, but mentally, having the expander in after surgery really did make me feel better. I was never concave, or completely flat. It really did make me feel better.
Colleen
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I only have one tata and, since I had the cellulitis which drained from October - February and now rads, I don't have a prosthesis. I'll be getting one when rads is done, but I don't regret not getting reconstruction. Even if I have to have the other breast removed down the road, I'm still going chest commando.
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Thanks for the info Colleen.......I'm bout as dumb as a box of rocks when it comes to the recon stuff!!!
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Hi Miss Jane.......I tried to call you the other day. Didn't leave a message......I hate answering machines.....lol
I don't care to go breast commando either.......my sugeon just recommended I talk to the plastic surgeon just in case I wanted recon done. Right now it's about TMI for me. Plus dealing with a daughter who is miserable 24/7 and not being able to do one thing to help her is getting to me too!!!
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DD is an extra stress you don't need now. I think you and I are the only ones who have exchanged #s. I don't have Juli's. I'm worried about her, too.
I saw my rad onc today. My BP is back down to normal (thank God), but I gained .8 lbs. I'm eagerly awaiting spring so I can start walking outside. I'm looking for hair every day. Not much going on up there.
I've been praying for you, Genia. His will, not mine be done.
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Thanks for the reminder Jane......
I looked on switchboard.com and Juli's number is non published. I hate this.........just wish we could hear SOMETHING from her........and Trude.......but Trude is probably still in the hospital since her surgery was just yesterday. We don't know how many days they are keeping her.
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robin- i didn't have taxol but taxotere and 2 wks after chemo my legs started swelling with the left being the worst (usual for me) got so bad my toes would go numb...Long story short they gave me an wxtra fluid pill to go with my demedex and after only 1 pill it went away. PC doc checked to make sure it wasn't a clot first but I really think it was a delayed reaction to the chemo like my nails and all the other issues that hit me after it was all over.
TOMORROW IS THE DAY!!!! LAST RAD TX!!! boy will i be doing the happy dance...SO wherever you are tomorrow at about 4:25 do a happy dance for me. I am peeling under my arm and the collarbone and i feel like i have a porcupine down my shirt but BABY I"M ALMOST DONE!!!WOO-HOO!!!
Genia- I'm glad you like the PS and that he sees where you are coming from.It is so good to be heard!!!
Hopefully we will hear from juli and trude soon. Prayers to both of them.
Have a great weekend ladies...I'm not looking forward to the time change but beautiful weather is supposed to be coming to us this weekend and i for one am looking forward to that!!
HUGS
Lisa
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Lisa - You mention delayed reaction. It's been 6 weeks since my last chemo and my eyelashes and eyebrows are STILL falling out. I have 1 eyelash left on the left eye and 2 on the right. My eyebrows are almost completely non-existant. My hair on my head is growing back sssssllllllloooowwwlllyyy. Maybe I'll be able to go hat-less by Memorial Day. 9 rads down 24 to go.
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Lisa.....I will have to remember to do the happy dance for ya tomorrow! Congrats girlfriend.......
I had the swelling too.......still have some at times! But it isn't as bad as it was.
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Lisa, Post when done!
Genia, I know it is TMI, but I agree with everything Colleen said about the expanders placed at time of Mastectomy. And the whole rad thing. I know a ton about this too as I had to decide what to do. So if you ever are thinking of this, ask us.
Jane, the lashes and brows come off, and not too long, they come back. I stipped chemo 11/10 and at the end of Dec they were growing back in. The eye doctor saw them under his magnifying thing when looking into my eyes!!!
Yep still wondering about Our Juli. And our Trude!!! We need a phone list for times like this...
Spring...
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OMG, I miss visiting everyone...as soon as I took my Neulasta shot I had some of the most horrible pain I've ever experienced. I was actually crying. My skull, shoulder blades, pelvic bones, thighs all the bones in my body just plain hurt. hurt. hurt. My doc says it's the Taxol. I CAN'T TAKE ANYMORE TAXOL. EVER AGAIN...I THINK. I don't mean to not join in the conversation but I seriously have no memory.
My mouth filled with sores 3 days ago and WOW did it hurt too, so I got a bottle of First- Mouthwash BLM suspenscut from my doc, which is a GOD send for me. Swish and spit are the only instructions on the bottle...relatively easy to follow if I do say so myself
. Genia, your pic makes you look like a young girl so don't even tell me you have a young daughter.
Girls, would you believe my pharmD gave me a hair complement two days ago...it's coming in silver etc...she liked it...so, of course it started falling out again today. ARRRGH!
I hope this story will give everyone a laugh. I was sweating like crazy on the hot bus so I took my knit cap off for a minute. Lo and behold, the lady behind me asked if I was post-op breast surgery; of course I said yes. With that she opened her BLOUSE....showed me her R breast scar and her two lovely silicone breasts. They looked damned good to me so I told her so. You should have seen her happy face when I told her how good they looked. My inner heart wept because I was able to bring some happiness to this lovely 50 year old women. She told me she has Chemo for 6 months 30 years ago. She got BC when she was in her mid- twenties. WOW!
My feet are numb and my gait resembles a lil old man who has had so much to drink he can't put both feet on the ground..I have beginning neuropathy...YUCK! I'll have to talk to MD Tuesday about my numb achy feet for sure.
We still have snow banked near the edges of the sidewalks but it'll be gone when we hit 50 this weekend. YEAH!
Genia I have you in my heart and my prayers. Being a mommy is so so hard.
Spring and bettsygirl I'm so glad your skin is coming along...healing etc.
Wink, I'd give anything to feel alive and wired again with no foot pain or numbness...oh well:(
I'm a lil scared; I lost 4 pounds in 2 weeks and I did nothing to make that happen...that's the stuff that makes me nutso...guess I'll relax and enjoy it. My Onc is insisting I get my bone scan 3/11/09 and my CT scan with contrast March 18, 2009...BAH HUMBUG!
Jill, I am glad you are hospitalized...sorry for you personally.... but glad you are getting IV meds and good care.
love ya all so so much,
I have a few regrets...If I had know I was triple negative I would have had a double mastectomy since these tumors come back really fast...Oh well. I didn't know.
Mina
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hi girls, this will be short and sweet. surger went well....only one lymph node taken and not with an incsion in my pit !!!! The surgeon said the tumor was gone !!!! All looks good...but off to bed..very sore and tired. Love you all.
Trude
Ps....yes we do need a phone and address list
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Trude, that is excellent news, so glad it is over for you. Thanks for letting us know, we have all been thinking about you. Good luck with your recover.
Singapore Chris
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Trude, woooooooo!!! I would be very interested to know how the did a lymph note without incision to arm pit!? I guess they used the Mast. area. How smart! (The armpit thing is seriously annoying). HAPPY HEALING WOMAN!!!
Juli juli juli juli, sending good thoughts and healing yoru way.
Mina!!!! The woman opening her blouse on the bus cracks me up!!! there is such a sisterhood with BC women, don't you feel it? That is the perfect example!!! What a great story too. 30 years ago!!! so sorry about the pain woman. Are you really not doing any more Taxol? Poor kid. Chemo is so hard, but Trude had NOTHING so it is working!
Spring...
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I found the phone number of Juli's next-door neighbor (she's #6 unpublished phone#); he's #5...do you think that we should give him a call? I'll PM it - let me know what you all think.
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I wouldn't know what it would hurt Donna.....just explain that we are all worried.
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I thought about calling the hospital in Simi Valley......but I know they won't tell me anything even if she is there.
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Winkie, did you call?
I went to lunch today at a nice place with a friend today, and when we went into the Ladies room I popped off my wig, and she HUGGED ME!! She said my hair was so cute. I think I am going to henna it this wkend and transition into no wig soon! Besides it's going to be 70's here, may be getting too warm for a wig soon!
Spring...
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Springie.....I wanna see pics of that beautiful head of hair!!!!
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