TRIPLE POSITIVE GROUP
Comments
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Kltb04
You would have been given a packet when your power port was placed with information about it , a rubber bracelet and a card for your wallet. There was someone in these forums te other day who just found the stuff months after treatment started.0 -
Hmmmm....I never got anything like that....
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soltantio They do have child ports that are powerports. Also I hear the newer ports are not as big, don't stick out as much. Things have changed in 2 years (got my port Oct. 4 2010)0
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i got that little purple promotional phamplet too with my power port - the problem i have had is that not all nurses are certified/trained to use a port. So I still have some blood draws/injections (ie for the muga) through my viens. Last weeks CT scan left a huge black and blue mark on my arm. I don't think my viens would have survived an entire year of treatments - they are barely surviving the occasional pokes i am getting.
i got the smallest one they had - i think it was a childs port because i am quite small - it doesn't stick out much at all
i can't wait to get it out next month to be honest with you
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Ah yes, the purple packet (with card and bracelet)...I've got a power port. Thanks for reminding me! I had filed that info away...
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I've worn the bracelet since day one. Just think if you needed CPR.....that catheter is stuck in your artery!!!!
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Why didn't I get a card????
On another note I just got a call from my PS. He doesn't want todo the TEs when I have my BMX since I am having rads. Very disappointed. Is that for the best? Should I get a second opinion?0 -
Kltb get a 2nd opinion. If you're going to do TEs some feel it's better to place before rads. Also check... It might be the rads onc that requires this. I'm on my iPhone so I'll post more when I get home. DH in surgery so I'm sitting in waiting room. Just rotator cuff surgery
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kltb04 mine would not either (put in TE's b4 rads) but i see A LOT of women on this thread/boards who have so it is possible, might be a canadian thing in my situation because i did get a few opinions and no one would do it. Thats the reason i waited and am doing my bmsx with TE's 6mos post rads0
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rozem - did they say they would do the TE's later - after rads - so much of what I am reading seems to indicate that you get bad results trying to do TE's before rads but even worse if you try to do them after??
lago - thanks for the input - and hope your DH surgery goes well. From what I can tell, this is strictly the PS call. The RO said that some PS will do it and some won't. This one apparantly won't.
I can't really do anything until I talk to my BS. This PS was recommended by her and they do many surgeries together - everything was set up through his office - the OR time, the date, everything. So now that he is out of it, I have to make sure my surgery will go ahead as planned in 3 weeks. I will be 7 weeks PFC at that point and I don't want to delay it any more. BS is in surgery today and I won't hear anything back from her before tomorrow. Will see what she suggests as far as getting another opinion at this late date.
I am really saddened and disheartened by this news. Cried all afternoon. I don't know why, I guess I just have thought all along that the immediate recon would happen and it has just been a blow.
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kltb04 i hear your pain...i cried so much waiting for my surgery after neo adjuvant, it was soooo tough. Then to be thrown this news doesn't help matters. I would not delay your surgery, i think after chemo surgery should happen 4-6wks after your last chemo. I had another crying fit last week when they told me surgery was delayed from oct 01 to the 15th uggghhh
yes they will be putting in TE's at my surgery, HOWEVER i will have to have lat dorsi flap surgery which means they will be taking muscle from my back to use on the radiated side only. The issue is that rads damages the skin/muscle and they need to use the flap to hold the TE and then implant. Instead of lat dorsi you can do alloderm, but that wasn't an option for me because it is still under clinical trial here in canada. I am not sure how those who get the TE's and then get radiated fare on the radiated side - im sure the other ladies will chime in
hopefully you can get another consult quickly, i know its so tough because of scheduling issues with BS and PS - that's why mine has been delayed, BS may not be in town so they don't want to hold OR space just in case
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For the ladies who are having joint pain and muscle stiffness, particularly in the hips and thighs, try slowing down your Herceptin only tx. I had my first one in 30 min. - so much discomfort I could sleep more than 15 minutes at a time. I slowed it down to 90 min. (thanks omaz!) and it made a world of difference.
Some of the ladies on the TE Trouble thread had issues with skin problems doing expansion after rads. Some PS want the TE fully expanded prior to rads so the skin has already been expanded. Don't know if you can do a one-step direct to implant surgery, then do rads. Others do the BMX, stay flat for a year, then do TE/implant or autologous recon (flap) surgery.
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SpecialK - will slowing it down help for the pain several days out? I didn't notice it until about 2 days later.
rozem - oh, ok, I get it now - thx for clarifying that...I am pretty sure he (PS) said we could still consider the TE's/implants after all the rads and healing but we really never got further than that. I have a feeling I will be shopping around for someone more experienced if I choose to go another route.
It's been an emotionally draining day. Hope for a better one tomorrow.
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kltb - that was my experience, for several days after tx and long term.
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kltb- my herceptin is infused in 90 minutes and i still have the joint aches. I think it is just a side effect of the med. In fact today i am having more GI disturbances too. My stomach just doesn't feel right. I called the MO office and they said Herceptin does come with alot of SE. So the GI stuff is related to it as well as the muscle aches. i do take tylenol and that is helping. I have 10 more Herceptins left hope i can do it. i also noticed on Saturday more shortness of breath but then seems to get better. Also, had a runny nose and alot of post nasal drip. I think that is all herceptin. When i had my Taxotere/Carboplatin treatments all the side effects just blended together. So now it is like sorting things out. What is left over from chemo and what is a side effect from Herceptin. I just had herceptin on Friday. Do they give you benedryl before your herceptin? I don't get it but i have read that some centers do give pt that.
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I had a TE placed during skin sparing MX and had rads. My reconstruction turned out great.
The reason some surgeons don't like to do TE placement with rads is because there is about a 30% chance of failure.
I had my TE placed, split open the MX and had the open wound all during chemo. After chemo I re-excised the incision, post-poned rads by 6 weeks so I could get my fills in ... and even took three AFTER rads.
This is your decision. Not theirs.
My PS was able to "release" the tightness caused by rads during exchange. It's completely gone now.
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Your BS only works with one PS. I know my BS gave me referalls to 2 PSs. If they all work in the same treatment center I would think you could choose one of them and keep the same BS.
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They are all different practices all over town. I am going to talk with her tomorrow and make sure everything is a go for the surgery and then ask her of she can recommend me to anyone else - especially if I end up doing more complicated reconstruction. I have about come to grips with delaying the reconstruction for now.
Well actually for the last 2 hrs I have been dealing with kids and school stuff so no time to think about it!!
Oh and the MO office set me up for a port check to check my perfectly working port. (due to the mystery bump) I am also going to talk to her about that if I can get her on the phone and not just relay messages through the nurse.
I will keep y'all posted!0 -
Hi all. Hay to let you know I am back in the hospital minus my left TE, again! Aaaarryrrggghhhhhh!.
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Oh my! I don't know your whole story but I am so sorry!!
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NOooo not again! Details
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Oh moo, are u in pain---I'm sorry
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I posted details on te trouble. I can't copy paste on my phone and I can't type it again. Sorry. Much love
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Moon, please get well.
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Hey moon sorry to here that. Where all thinking of you
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Moon, WTF - you have had more than your share of bumps in the road.
Sending you hugs, fast healing, and much love. 0 -
Eileenohio, thanks. Was you Mom a Margaret?
Peggy
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Moon - I just went to the other board and read the details - so sorry you are having to deal with this rather than having the lovely visit you had planned with your daughter
Get better soon.All - here is my update from my drama yesterday. I hope it shows up as I am trying to cut/paste from another board.
Oh. my. gosh. So tired of the runaround. Called the BS office back - the receptionist said no they hadn't heard from PS. Called PS office back - the scheduler/patient liason said YES PS had called. Got to talk to PS again. He tells me well, your BS really doesn't think you need radiation. She was going to pull the RO report and call you. I was like, um, yeah I DO need radiation and here's why. He didn't particularly care, lol.
So I proceeded to question him again and he did explain that implants are still an option but it it can be done with the latissumus dorsi flap. Which I am sure someone told me yesterday but I was too distraught to listen...sooooo.....
Called BS back again and spoke with the slightly grumpy secretary (not really but she isn't warm and fuzzy). She told me that she would speak with BS today and have her give me a call back but that "the clinic is quite busy today" - um, yeah, whatevs, I need to know if I am having surgery in 20 days as planned.
So now I get to defend my radiation decision to her.0 -
Kltb04-I am following your situation very closley. I am scheduled for bmx on Nov. 6 and my BS told my PS that he did not think I would need radiation. Since he has not seen any indication on mri or pet of Node involvement. So my PS is going to try to do implants at the time of surgery...if that turns out to not be an option he will do TE. But last week I asked my MO and he said that there is a chance I will need rads:( won't know for sure til surgery. So I am in the same boat.
Not sure what to expect at this point.
Moon- I am so sorry that you are going through this. Sending you lots of positive energy.0 -
BTW I went into my BMX with TEs placed thinking I would have rads. We didn't know till I met with the rad onc. My PS was pretty pleased that I wasn't going to have rads but was willing to work with me to see if I did. I didn't want a lat flap at that time.
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