December 2011 Surgeries - want to wait together?

CookieMonster

Spunky - Ireland huh, lucky you. DH has said that we'll have to do something special next summer (15 years married, 20 years dating).  As for the scars, I think my PS probably said it best when he pointed out that all the creams say that you have to use them for upwards of a year to get response and after a year, most scars are much better on their own. The best thing for scars is time.  My Sept. SNB scar is almost totally gone now.

QuinnCat

Spunky - sorry to hear about your shoulders....honestly, I sometimes wonder about all the help and sympathy I got throughtout this BC journey, but when I had shoulder tendonitis in both shoulders, 5 years ago, that was 100 times more difficult, but I was on my own...sleeping is the worst.  How many ways do we need our shoulders??!!! People relate to cancer, but nothing compares to the stuggles of having bad shoulders.   I'm so sorry and hope you get better.

I have to make a huge decision tomorrow, whether to continue on with my final 3 chemos.  The neuropathy in my feet (and hands, after Taxol) was improving, but regressed after the 3rd carboplatin infusion.  I"ve taken a 2 week break (which is protocol), but tomorrow I'm due for the 4th infusion.  No guarantees this won't get worse, but more importantly, no guarantees it will ever get better.  I don't know how to make this Hobson's choice.

SuperFoob

Kam,

I don't know if it will help but I'll give ya my two cents that I learned about here.

I had 8 infusions of Taxol/Carboplatin.

I used L-Glutamine 10g, 3 times per day (yes, 10g not mg). I would mix it in water.

I never got any neuropathy at all. Of course, I might not have gotten it anyway since ya never know what sx's one may get and I started using the L-Glutamine a few days before I started the infusions. I used it everyday until I was done with the chemo.

Maybe ask your Onc if it's ok for you to use.

I hope it helps you.

QuinnCat

Hi Superfoob

I have been taking flutelike, but not at that dose. Ive also been taking lipoid acid and carnitine...maybe not enough. I know it helps as when I miss a dose ( I take each twice a day) things don't feel so good. I'm going to add B complex today, but since a mega dose can't hurt as these are water soluble, I might try upping the dose. You are sweet to write.



I went ahead And took the fourth chemo today, but my MO and I decided if I get worse, I'm done. Most people get taxol and Carbo together...this is sort of bonus chemo after the dreaded taxol...the worst of the neuropathy came from the taxol. Not sure if Carbo is just piling on, or it's just the taxol induced neuropathy getting worse.

CookieMonster

Hugs Kam! Chemo sucks. Sorry you're going through this. I hope that bigger doses of the meds will help. Hang in there.

spunkyboobster

Kam-so sorry you have to go through this additional stress. I'll be praying you don't get any more se's and can finish your treatments.

I'm interested in the shoulder tendonitis-I think when docs are stumped they just dx frozen shoulder...off to google it now.



Cookie-I hope you get to Ireland-it's great. This was actually my third visit-and my favorite.



Have a great night everyone. (((hugs)))

Moonflwr912

Kam, feel better.

QuinnCat

Thanks guys - I love this group back!

"Flutelike"....do you think Ellen DeGeneres will take that for her auto-correct spelling section on her show?  I was typing L-Glutamine!!! 

Spunky - I suppose they might call my shoulder tendonitis (99% gone now) "frozen shoulder" (doctor's never did), but I could still move my shoulder joints, but certain moves (not all), and any lifting, were extremely painful. Reaching backwards, reaching too far upwards, I remember those to be horrible, but amazingly, I've forgotten a lot of the particulars.  Not moving felt good, though.  Being still. Sitting....all ok.  Sleeping was an issue of proping parts up and draping arms over huge european pillows and then not moving.  I bought a recliner one day...sent it back the next.  The only real cure were neck massages (it's origin might have been in my degenerating cervical spine - due to age, whiplash 7 years before and a childhood injury causing arthritis in my 2nd cervical)...heat pads of the neck, good ergonomics (once I returned to work), PT exercises (the best? - drawing my chin into my neck and stretching that part of the neck)....and CELEBREX.  I'm not a big pharma person, but I tried it (and it does have a list of scarey SE's), but it really put me on the path to recovery.  When I start to feel a relapse (pain in shoulder(s)), I would pop a Celebrex or go to my PT for a massage and I preempted any further progression to eliminating the pain.  It took me months to recover from the worst of it.  Just took lots of PT, taking Celebrex, watching my posture while using a computer and doing PT exercises.

fitzdc

Ah Ireland - my DH is there now visiting his family.   I so wanted to go this year too, but darn treatment - not for bc this time, but for disc issues - kept me home. Sorry some of us are feeling poorly; wish the best for everyone.

Friday am going for reflexology, might as well give that a try. 

  "flutelike" made me laugh.

Ginger48

Reflexology is pretty cool.



Kam- hope you are better and able to finish your treatment.



As if breast cancer, frozen shoulder, lymphedema and sleep apnea was not enough for this past year; yesterday my rheumatology appt ended up with a diagnosis of fibromyalgia. Seriously???enough!!!

Moonflwr912

ENOUGH IS ENOUGH, D*MN RIGHT!

CookieMonster

HUGS Ginger!! Enough is enough, time for someone else's turn on the wheel of punishment (as we sometimes call it among my friends).

spunkyboobster

Ginger-sending positive vibes, enough already!

Kam-that sounds exactly like what I'm going through.  I need a new primary doc-mine's sweet, but not too good at the whole doctor thing...

Off to work-have a great day everyone.

fitzdc

Ginger - I am on Lyrica for degenerative disc (dd) and know it is often given for firbomyalgia.  Have had no real SEs except for muscle cramps and insomnia. Was worrried about the lyrica and tamox together but it seems to be OK.  If you do go on Lyrica give it time to work.  It took about one week but the horrible pain of the dd is almost gone.  I start PT next week and hope to ease of the Lyrica soon. 

To add to stress - I switched insurance in April.  My recent revision (total cost 22, 142) has been denied as  purely cosmetic.  Yep, I decided I was being vain when I wanted symmetry, vain to want the scar with the dog ear to be corrected;  Calling today in hopes to sort it out.

QuinnCat

fitzdc - I would appeal that insurance denial on the revision.  That does not sound correct.  Have you looked at the law that required insurance companies to pay for reconstruction?  I would want to read the fine print as it may reference what reconstruction is.  Also, what does your PS say about the insurance denying?  They should know too whether it is fightable or ever rejected by other insurance companies.  That is the one good thing about having "government insurance" (it's really not "government insurance," but I'm being sarcastic cause that is what the public sometimes refers to it as when they talk about Congressional health insurance, which I have the same as a federal employe....we choose from a roster of private companies, in actuality).  If they don't pay, we just call our Congressman.....since they get the same insurance and are incentivised.... they've been known to help with the problem.  Since the insurance companies know that too, they generally pay.  I've never had a problem, but your problem is going to make me start asking questions beforehand!

fitzdc

Thanks --- I know it is not correct as all surgeries related to BC are covered.  The issue is that the mastectomy was done on Insurance A and now I am on insurance B (lost my job and COBRA was insurance A but it was too expensive so after much research went on my husband's policy - insurance .  The company says that they need all the records from the mastectomy for review even though they did not pay for that they want to make sure the revision was necessary.  Actually the new company has also denied MO appointment (they need more information), lab tests (again, they want more information), MRI costs (for the DD - more info needed).  I will get it all sorted.

QuinnCat

Sounds like they're being obstructionists,  hoping you will give up.  I hate insurance companies.

faithhopenluv

Wow Fitz that's crazy. I've been fighting w leftovers from my 2/1 port insertion. I went to an in network hospital, but they contract out so many services. One is being denied for 5k, the eob doesn't explain what it represents. Our broker rep is still working on it.



Kam - you've been through so much, you are almost there. I know everyone said taxol was supposed to be a breeze, although my neuropathy was mild and strangely mostly in my face the bone pain was rough. How is everything else going?



Sorry to hear that so many are having shoulder pain. I hit my funny bone on my bad arm

on Saturday and within 2 hours there was a 6 inch line of inflammation. Went to urgent care and am on 2 antibiotics, she's treating me for cellulitis. Wasn't expecting that to add to the list of worries.



I'm on day 2 of wearing the brava. It is pretty funky. They are huge plastic domes w sticky adhesion. Once I get a good seal, there is a little hand held pump that regulates the level of pressure. Im sure I will get better at it, but last night the whole process took me over and hour to get setup. But, I did sleep through the night. Eventually I will be at 10-12 hours a day. It isnt too uncomfortable when it's on, but pealing the sticky side off each morning does hurt. On the positive side I can see visible results, it is stretching out the tissue. I had a skin sparing w only 1/3 or so of a b cup injected after surgery, so there is a lot of extra skin that healed in folds. I can see the folds popping out. Seeing progress so early makes ripping them off my skin a little easier.



Hugs and smiles everyone!

QuinnCat

Faith -  except for the neuropathy, I'm really doing great. I think all and all, I tolerated chemo really well....taxol not so much, but I'm 6 weeks out from that poison, so it's just dealing with this residual neuropathy. Steroids make it better, so I"m feeling good today - day after 4th carboplatin.  I have my next surgeries in a month, so hopefully all will go well on that.  For clarity, my shoulder pain was years ago, and mostly resolved, though I wonder if the xray I got back then damaged my good BRCA gene and caused this BC.

Can't wait to hear more about the BRAVA.  Do they use this BRAVA bra rather than tissue expanders to achieve a certain shape versus just an emorphous space?  Or does the fat go on top of the muscle, rather than below the muscle?

Blessings2011

Kam - gentle hugs to you. Flutelike? I thought perhaps it was a new music therapy for neuropathy.

Ginger -  I've had fibromyalgia since 2000, have gone through a ten-week Pain Management program for chronic pain, and have a standing order for Vicodin when the pain keeps me from sleeping several nights in a row. However,  one of the unexpected side effect of my four months on Optifast was a huge reduction in my fibromyalgia pain. I'd say on a pain scale of 1 - 10, it's been like a 1 or a 2 instead of the constant 7,8,9. What was different? Optifast is gluten-free. I'd always wanted to go on an elimination diet, but it was just too darn much trouble. But four months on the liquid fast, and my symptoms diminished so quickly I know it wasn't from just the weight loss and exercise. I've also been reading on the AI threads about how women with joint pain SEs have benefitted from eliminating gluten from their diets.

Faith - That whole Brava thing is SO out there! I mean, who woulda thought of that? Creating the framework to inject your own cells to recreate a breast....amazing!!!! Do you think maybe a warm washcloth in the morning could help break the seal and make it easier to peel the sticky sides off so it doesn't hurt you?

~~~~~~~~~~

I see the PS tomorrow!!! I have my 10,000 questions all neatly typed up, along with my Allergan catalog circled and marked, and am hoping that we can set a date for exchange.....SOON!!!!!

Ginger48

Blessings- glad you are feeling better! I have been gluten free for 7 years and for the last year I have also been off dairy, soy, eggs, peanuts, citrus fruit and sugar. I eat very little that comes in a package.

I am doing much better right now but am off for summer break. The test will be when school starts up. What is so frustrating is that I have not lost any weight even being off these restricted foods and can only exercise about 30-45 minutes or I hit the wall.

Kayce234

Hi Ladies!  Love seeing how many have stayed or have come back to give updates!  I have a quick question for everyone - Has anyone experienced itching on the affected breast?  I have the unbearable bouts of inching on the underside of the breast that had the cancer.  Strange thing is my cancer was up high near my sternum almost in the muscle and this is under the bottom.  The only thing that relieves it is to put an ice pack on it - happens at least once a day if not more.  Anyone have this???

Thanks!!!

Moonflwr912

Kayce, haven't had that. But phantom pain in a removed breast is wellknown. I suppose itchyness qualifies!

CookieMonster

I have definitely had the unscratchable itch - it was irritating. But it was never so bad that I needed an ice pack, that seems extreme. I hope it gets better.

chrissilini

I've had the unscratchable too. Quite annoying. I had it mostly when I still has the te's. Still do occassionally with the implants but not too bad. Never had to put an ice pack on it.



So, I made my appointment with Vinnie Myers for 3D nipple tattoos. I'll be going to Baltimore in October (the earliest I could get). Now to figure out the logistics of air, hotel and car. I've never been so i'm going to take a few days and check things out, a mini vacation.



Hope all are well.

faithhopenluv

chrissilini - that is something to look forward to, not only the mini vacation but also completing reconstruction.  My sweetie is from baltimore (which makes for interesting sports smack talk as I grew up in pittsburgh), but he has definitely introduced me to a true baltimore crab cake.  If it looks pretty and prefectly shaped, he won't touch it.  I have 2 trips coming up which will be really interesting with the brava thing.  If I take a break for a night, I essentially lose 3-4 days of progress.  I have a 4 night trip to St Louis before the next surgery and a 3 night trip to Boston a little after. The idea of explaining to security what a brava dome is keeps coming to mind.

 Blessings - happy to hear you are feeling better!  Your discipline with your diet and exercise is inspiring

 Kam - every week from Taxol is a great thing.  My 1st apt with my onc since my chemo ended on May 11th is next Wednesday.  For the first time ever, i actually want blood drawn because I want to know if everything returned to normal.  All the fat that he injects is above the muscle, it's job is to replace the breast tissue that was removed.  He filled from the outside first, so they are oddly shaped now.  Plus, because there is more skin than tissue there are folds.  The domes are boob shaped so that and because he already filled the outsides of the breasts when the pump suctions it is primarily inflating the centers.  I'm getting slightly better at putting them on and taking them off - hoping I get much better soon because it is such a project each night.

have a great weekend everyone!

Blessings2011

Had a GREAT meeting with the PS yesterday....he was so impressed with my weight loss, and even remarked "Wow, I can't believe how big these expanders look now that you've gotten so much smaller!" I was basking in the glow of that and other positive comments all evening....

Here is what I know: he will be using Allergan Natrelle High Profile Smooth Saline implants, in either 650, or 700 ccs. Each of these can be overfilled by 40-50ccs. (thank you, Whippetmom!!!) Currently, my 700cc TEs are underfilled at 620ccs.

The fact that my TEs are wider than the implants won't be a problem - the most would be 2 cm, just one cm on each side. The TEs touch in the middle, and the implants won't.

He won't be doing any suturing to make the pockets smaller, as that would cause a longer surgery and recovery time for me, and possible complications down the road. He wants the implants to move, and not be like the TEs. He did say that perhaps they may migrate slightly when I lie on my back, but they definitely won't point east and west, or disappear under my armpits.  

Surgery will be outpatient, about two hours. General anesthesia but no intubation, just LMA (laryngeal mask airway). NO DRAINS!!! Two hours in Recovery, and home I go.

Will get a big Ace bandage in the OR, a few days later I can switch to a sports bra, and then we'll discuss more supportive, underwire bras I can get.

Tentatively, I'm scheduled for August 22nd. (I think he's fitting me in on one of his Clinic days. He knows I'm more than ready to get this done!)

SOOOO - almost ready to cross over to the squishie side!!!

QuinnCat

I'm a week behind you Blessings (on the exchange surgery).  I don't see my PS until the day of your surgery, so I"m so in the dark compared to you.  Having my ovaries and port removed same surgery, but it's still all outpatient.  From reading some of the threads here, it seems like we have to wear a bra 24/7 after this surgery....is that your understanding?  If my PS doesn't tell me this soon, I won't have a chance to find one by my surgery date!  I've loved not wearing a bra for the last 6 months, and honestly, nothing I own would fit me now.

chrissilini

Blessings...I have Allergan mod profile, silicone,700cc's. I like them so far and seem to be the right size for me. My PS didn't put in any sutures either. I asked him about lateral movement and he said some movement is ok. He actually measured how much they move and there's no problem.



Awesome on the compliment! Isn't it great? I haven't lost as much as you but my PS noticed too! It does make a woman feel good, doesn't it?



I think I wore a surgical bra for the first week, 24/7 and then moved to a sports bra. To be honest, I don't remember exactly. Wow, could it mean that all of this bs is fading from my memories? I guess so, as much as it can.



Good luck to those with exchange dates soon. Heal quickly to those having issues. Be well all.

Ginger48

I wore a sports bra 24/7 after my exchange. I got them at Walmart. They have lots of hooks up the front. I think they are made by Hanes or fruit of the loom.