TRIPLE POSITIVE GROUP
Comments
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Shore my MO likes her patients (that don't have distant mets) to keep it in for 2 years because that is when you are more likely to recur. She did say it was up to me but I didn't want to jinx anything.
Linda mine are also brittle some with vertical lines and partially lifted/curved. Maybe later I can post a photo. Just to busy right now. THis is a drive by post.
My Port surgeon was very proud of how my port scar healed. He said my scars under my arms should look as good
Because it healed so well he is going to go through the same incision.I did paint my nails black as soon as I read about it. Yes the smell has been gone for some time thank goodness. That was just gross. thanks for the link
Rozem did they take any saline out? When is your exchanged planned
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<<<<rozem>>>>
I'm so sorry you are still in so much pain! Hugs to you!
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rozem, this is all so new to me but I thought I'd throw this out in case you haven't tried it. The plastic surgeon who was initially scheduled to be in the OR with the breast surgeon this week gave me a packet of Arnica to start taking two days prior to surgery and to continue taking post-surgery. I just checked the brand - it's Boiron. Three tubes in a little blue container.
Of course, it's too late for the pre-surgery option for you but perhaps it's something to consider post-surgically?
I just googled arnica and muscular pain - here's one link:
Arnica montana is one of the hundreds of homeopathic remedies used by physicians, physical therapists, athletes and others, to treat muscular pain.
http://www.ehow.com/about_5089031_medical-uses-arnica-montana.html
Also, after reading your post I was really curious about implants placed above the muscle (versus below) and found this link at RealSelf.com. You may have already found it but just in case you haven't (12 doctors replied to the question):
Can Breast Reconstruction Be Done with the Implant on Top of the Pectoral Muscle?
http://www.realself.com/question/breast-reconstruction-implant-top-pectoral-muscle
I hope you get some relief - soon! Alleve has helped me in the past (not with what you're experiencing - just muscle pain in general) but I'm sure it wouldn't hold a candle to the pain meds you're already taking.
Curcumin/Turmeric is mentioned in relation to muscle pain/inflammation on this page from cancer.org (curcumin helps my muscle pain far more than Alleve ever has).
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Rozem, sorry to hear you are still in pain.
In addition to removing some saline, maybe PT would help? When my TE hurt a lot (mostly toward the end when they were huge), valium helped relax muscles so I could sleep. Im sure you've tried various pain killers. Maybe see a second PS just to get another opinion?0 -
they did remove some saline...and i had terrible muscle spasms for days afterwards...im afraid to let them touch me quite frankly
Lee - I will look into these meds
i guess my frustration is that i still have to control the pain 3 wks post-op, I feel like the pain should be subsiding especially since i have not had any further fills.
my exchange was supposed to be done 3 months after final fill - well thats not happening since my fills have been delayed (if not cancelled altogether)
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MsTori - I would shake too - have a cup of hot coffee, tea or some soup afterwards (since ice in the mouth can also help) and it will warm you right up.
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Rozem, I'm rooting for you. You do what's best because we all want you to have wonderful QOL scores!!!
Keep us posted on how your appointment goes.I wasn't planning on icing. Is that being a dimbulb? I just can't stand cold...Do you ice for the entire treatment? This sucks because I've always had pretty toenails. Finger nails, not so much.
I need some advice. I think I have cording. Is that common when you only had one node removed? I felt this very strange rope like thing in my pit this morning in the shower. It doesn't hurt though.
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MsTori, So GLAD it works for you....I'd rather be a little loose than the big C...ugh. lol
Solt! You ARE SO CLOSE to being done!! WOO HOO! I am excited for you.
BCBarbie, good to see you.
LeeA, haha on the ab post. They actually look a little better now....I'm getting stronger after a couple surgeries the last 6 months (Ooph, recon).
Roze,
Damn. I am so sorry to read this. I was told implants won't work over the muscle of a MX because the muscle has to stay right next to the skin to keep the blood flowing to the skin....but if there is a way to do it...I hope you're able to.
3 weeks straight of pain. I probably would be looking at the knives in the kitchen!
Whatever you decide to do, I hope you find relief soon.
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Shore,
Ask your Onc if he thinks you should keep the port. I'm glad mine is gone, but I only had a uni, so I can get needles on my left side.
Pbrain,
I had cording for months. My PS said it would resolve on its own. He was right. Took about 3-4 months though.
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pbrain I had cording in my 4 nodes side… the one that doesn't have LE. Stretching will eventually get rid of it. I went for PT and it went away. Ironically the other arm (10 nodes) didn't have cording but I got LE anyway.
I don't know what to tell you about icing. Like I said not one of the more common SE but it does suck especially if you get it as bad as I did. It started in my toes after TX 2, fingernails after TX 3. They hurt before they start to lift.
Just looking at my SE from chemo list. I didn't realize my eye twitching started after tx 2.
Also noted that when I stopped working out as much I did get stiffer. I think it was a combination of treatment build up and not moving around enough. If you can do try to walk all through treatment.
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LeeA - my brother had tumors from the esophagus to the colon - cound not eat because the food could not get past the tumors, so had to be on a feeding tube, which then got infected so had to be fed through an IV - not good. I am actually glad he died quickly because he was truly miserable and just laying in bed, when he was not vomiting. Bile Duct cancer is a bitch. He was the strong and calm one in the family - my SIL is pretty flighty - so it was a really bad thing for his kids - he was the one they went to for advice and counsel. They lost their grandfather (SIL's dad) with whom they were close just a couple of months before their dad. My dad had already passed away from stage IV lung cancer 7 years earlier, so the males in their life were gone for the most part. I think they are doing ok now - 4 years have passed and there were some bad times for all of them.
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That's exactly how mine are Lago! Thought I was the only one. Last week I actually heard a chemo nurse (I volunteer at my infusion center) say that though taxotere CAN cause issues with fingernails, she's never seen it - maybe she should open her eyes - oops kind of snarky! You would think that two years out we'd be all healed, but I have lots of other continuing side effects too, so why should I be surprised.
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LindaKR I still have neuropathy in my left heel too.
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Hi all, just grazing around. My mind in a little fog with the Ativan. It's good to read all the posts from my BCO family.
Question, I'm icing, and faithfully, but what is it with the dark nail polish? Am I supposed to be doing something more?
I'm also having a I hate cancer day! I hate my choice of reconstruction pity party day! I'm hormonal, and monthly won't decide what it wants to do day! I'm bloated and my stupid hip to hip tram flap scar is tight day! Okay, I'm done. Sorry to be a whiner. It will pass.
((((Rozem))))) serious hugs for you. I pray that this works out for you. The muscle relaxants sound like it might be a good try.0 -
thanks guys...tonlee, trust me I am ready to cut these out myself
i just spoke to the nurse and she is trying to get the PS to prescribe some muscle relaxants, this makes to me but what do I know
i am just so frustrated at the PS - he just looks at my scars and mumbles how nice I am healing, how great the scars look, no infections blah blah blah. I'd like to see him remove his testicle and replace it with a bowling ball and see how he feels. Sorry this is my black humor coming out.
mstori hugs to you on your pity party, can I join?
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Rozem- come on over! I'm pity partying it up today! Even after talking to a shrink! Lol! I'm supposed to move forward past my scars and new looking and feeling body. Good thing I have my f/u with my PS next week. Give me time to calm down, get these chemo meds out of the system and not hurt the man.
Kayb- exactly....mmmmmm, Ativan.
Thanks for letting me rant.0 -
Ladies, you have no idea how glad I am that I found this group! You are all wonderful and so encouraging. I was at work all day and missed a ton! Thank you all for your responses about the gloves/ice/peas. You answered so many of my "how to" questions before I could even ask them.
Will have to catch up on everones posts later tonight.
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Shore,
I had my last Herceptin on Oct 15 and my port removed the following week. My reasoning was that unless I had recurrence it would never be used. The only ones who ever accessed it were the infusion nurses. It was never used for regular blood work or even surgeries. Remember you must have it flushed once a month and I just wanted to stop the constant medical treatment cycle and attempt to get back to my new normal.
If I have recurrence or metastasis, inserting a new port will not be my foremost concern.
So sorry Rozem......0 -
I've been researching oncologists today and have a quick question.
I've found three who have worked on HER2 studies with either Dr. Dennis Slamon or Dr. Sara Hurvitz. Dr. Hurvitz is booked through the first part of January so she's out.
When I called UCLA they said chemo would need to be done there which is a long commute, not in mileage as much as gridlock. I've been in some hellish traffic jams between where we live and Santa Monica and I don't want to battle that after chemo and I would prefer to drive myself to and from so my husband doesn't have to take off from work.
UCLA has offices in outlying areas and the top two on the my list are in Santa Clarita - 30 miles away but a less stressful traffic situation. The third doctor is in Pasadena, which would be the closest/easiest choice.
After reading all these posts about chemotherapy I've yet to absorb how often you go during each cycle. If it's one day and then back again a few weeks later for the next cycle, Santa Clarita wouldn't be all that bad and it would be well worth it to go to one of these two doctors who have not only worked with Drs. Slamon/Hurvitz but also have very good written reviews on Vitals.com
If it's a daily visit for a period of a week or so then I'll probably just contact the third oncologist who has also worked on HER2 studies/trials.
I know the Herceptin infusions are once every three weeks but the TCH part (assuming that would be the prescribed protocol) is the part I worry about in terms of feeling like driving 30 miles there/back.
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LeeA - My doctors were part of US Oncology. They are nationwide and all work together.
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Hi ladies, just got home from my first mammo since I was diagnosed. Thrilled to report NED,however not without a little drama and some tears. The radiologist thought she saw something on my left breast,so they did some additional pictures and applied more pressure to flatten the breast,well she still was not satisifed so the radiologist did an ultrasound (all this time I was freaken out) she said given my history she needed to be sure what it was,it was fatty breast tissue.Then I saw my BS. My BS told me all is well (Yipee) and that I do not need a mammo for one year. I have a headache from all this,now I am going to rest and eat a big dinner. What a day!!! Thanks everyone for you support and encouragement.
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Good news Eileen!
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eileen - yay! Sorry for the added stress!
mstori - there is a theory that light on the nailbed during Taxotere can cause nail issues, but it is only a theory. I did do the dark polish, but I don't think it is imperative.
LeeA - is there a specific reason you want an onc who has worked with Dr. Slamon? I received TCH - Taxotere, Carboplatin and Herceptin all in the same day, every three weeks, for 6 rounds, so 18 weeks. I continued to receive 11 additional doses of Herceptin every three weeks which finished out the year. Also, it is important to note that if you receive Benadryl and/or Ativan in your pre-meds you need to check the protocal at the center - they may not let you drive home - and your auto insurance may be invalidated if you do drive against their wishes.
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Thank you for the port advice. I want to put this behind me & will go ahead and get rid of it. My MO said I can get it out any time & I was initially excited, then scared, then nervous, then optimistic, scared again....you know how the emotional BC rollercoaster goes.
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That's great news, Eileenohio! I was thinking about you earlier today. Enjoy your big meal!
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Yay Eileen
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Great news Eileen....just had my first one in Sept and I had drama too!
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Shore...
I went through the same rollercoaster thought process. Sometimes I think the part of my brain that makes decisions has been altered. I go through the process for even ridiculous things lately!
No regrets so far after finally making these decisions!0 -
SpecialK, I don't really care about whether or not they've worked with Dr. Slamon but I want to make sure I find someone who is really familiar with HER2+.
Perhaps they all are - I don't know. Back at the beginning of this thread I saw some discussions about adriamycin versus the TCH protocol and maybe that's all been ironed out by now.
I know I've given you all just about everything but my SS# in the last week (all my nervous TMI/PITA energy) but what I haven't mentioned is how long it had been between mammograms. At this point I'm probably trying to overcompensate for being so negligent.
And today I'm extremely nervous about the fact that I haven't had chemo before the surgery and it seems like that's pretty commonplace. When my elderly gynecologist said "you better get on the phone with a breast surgeon" I had already done my research. Now I'm wondering if I should have contacted an oncologist first.
We don't know many people around here and my 73-74 year old gynecologist is 40 miles away (I never found a new one when we moved) so I feel like I'm missing something and don't have all my Ts crossed and my ducks lined up.
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Eileen- yay! Such good news!
SpecialK- thanks. If I don't need to, then I stay with what it doing. I mean the nails are technically covered up with socks and gloves during icing. Lol! Idk.
Re: port- I want this thing out as soon as they say it's ok. I still have my rt arm veins. I will throw it a really good going away party, to portebella. Lol!0
