June 2011 A/C & T Groupies Unite!

I just returned from my 2 week visit post 4th A/C & the WBC is back to 17400 but the Hgb is still 8 so tomorrow I'm having 2 units of whole blood.  I insisted on the repeat PET scan & Nurse Practioner didn't remember that I was to have 2-3 months after the 1st.  I insisted on seeing the onc & she agreed that the lumps & pain should not be there so I'm having my repeat PET & chest CT on Tues.  I have no muscle pain or tightness at the mastectomy site.  No swelling & full range of motion within 2 weeks post surgery.  No real scar tissue since I started doing vitamin E oil massage along the surgical incision 1 week post op.  I've done this with other surgical incisions & the scars can barely be seen & certainly not felt.  The chest area is softening up.  It's just these specific spot lumps that are growing & pain on palpation of the lumps.  I'm sure that having the PET now instead of after the 12 Taxol is the right thing to do.

Then Thur. the plan is to start Taxol.  I asked about pre-meds & I'll be having Aloxi, Benadryl, Tagamet, &  Ativan all IV before the Taxol.  Since I still have Ativan pills, Zofran, & Claritin I plan to take those the night before & continue as I took them on the A/C.  I'm hedging my bets on the nausea even though Taxol is not supposed to cause any.

Love, luck, laughter, peace, prayers, & littles SEs to all.

I had Taxol/herceptin #2. They gave me Aloxi, decadon 10mg, benadryl 25mg, Ativan 0.5 mg, zantac, and 2 tylenol. I'm tired, but feel pretty good. They gave me extra decadron for the rash to take for the next 2 days, and I will take in the day before chemo as well. I was in the chair for 6.5 hours, and am looking forward to starting at the new place next week.

BobbieJo, maybe you can set you classroom up, and take a few weeks off. I know we had a teacher that worked with the sub for the first day, then off until done with the big guns. I felt pretty good almost 2 weeks after the last AC. You don't want to go back to all theose germs until your white could recovers! Too risky.

I got notice yesterday that I can only take 30 days to 6 months off. I'm not even scheduled for surgery until sometime in December, then I have daily radiation. Nice employer after 15 years of never calling out! WTF! No heart or compassion. And this is a hospital!

Hi Bobbie...

You are on A/C now.  Did you start with Taxol?  I am reversed.  I had 4 rounds of A/C and now onmy 6th tx of taxol and herceptin.

I started getting blurry vision among other things once I was on taxol/herceptin.  A/C is very strong and will put you down.  I did better on the 3rd & 4th round.  Still problems.  A lot of popsicles.  eat yogurt.

Cider8 - I really did not mean to misinform you. The combination of Adriamycin and Cytoxan (AC) is the main hair killer. Taxol affects the hair much harder than AC in the long run. The Tax's affect our digestive system, in turn it cannot make the silica our body naturally does to nourish the hair bulbs and the hair follicles do not receive proper nourishment to survive. If you are constipated throughout you treatment and after be aware that your digestive system is trying to adapt.

Again a lot of women keep their lashes, eyebrows and don't have any problems with their hair. Everybody responds different as you have seen so far. Sorry again. My mistake.

Last summer did 4 DD A/C then 12 taxols, then 35 rads. Sephora has a brow stencil kit by Anastasia that was a lifesaver for me.  You just hold it in the right place and tap the powdered brow color right into the stencil As a rule I am not a make-up person but having those powdered on brows really helped me feel "normal" during that time.  BTW..my hair started to grow back while I was on the taxol.  Linda

Bobbie Jo, I have mild blurred vision, I think it was worse in the beginning or I've gotten used to it. Makes reading a little more difficult.

I often get lightheaded even sometimes in the third week, but especially the early days. I did find that the anti-nausea meds cause lightheadedness and followed the nurse's advice to cut back on the pills and try eating small amounts often. That helped.

OK, Ralston, I'm still confused!  I'll blame chemo brain, too!  I did DD a/c and am still doing DD Taxol.  I have done 2 of 4 taxol.  So it sounds like the DD taxol has the lasting SE on digestive system, hence hair issues?  Great!  But seriously, I'd rather be informed instead of whining indefinitely.  I will check out the silica supplement. 

I really agree taxol is not 'better' than a/c, it's just different.  For me, the worst parts are the bone/muscle pain, the ass on fire, and the rash + steriod pack.  I've been hyped up from steroids since my taxol on Wed.  I'm a glutton for punishment because I'm taking my 5th grade girl scouts camping tonight.  Fortunately it is for an event at camp, so all the activities and all but one meal planned.  I have to be there because I'm the only certified person in the troop, but I have some moms who will be going with the girls from activity to activity so I can stay put.  I also REALLy don't want to miss out.  My experience is that the the steroid crash plus bone/muscle pain will hit Sat afternoon.  I will be home Sat evening.  I hope I do OK!  I don't work, so I am used to doing everything at my own pace in my own home.  At least I can crash Sat night, or even nap at camp!  Last time I was able to sleep about 13 hours straight after I came down from steriods about day 4.

Thanks Michelle, for responding. Somehow it helps to not feel quite so alone.

Rose - I applied for SSDI also, just this week.  With my age (61) and my diagnosis, it should be a quick decision.  How long did it take for you to get a determination?  If I get approved, I'll also be eligible for Medicare in 24 months, which will relieve my husband's burden of providing health insurance for both of us.  Then he could retire a little early and we could cover him through Cobra.  At least I am hoping that is how it would all work out.

And Rose, 6 - 9 months is pretty standard for most companies.  The company I retired from had 3 months of short term disability, then 6 months of LTD.  If someone went on LTD, they were encouraged to apply for SSDI.  That also made them eligible for early retirement (we had a defined pension plan).  And I think the company covered their health insurance until they were on Medicare.  Every company is different in how they handle these things. 

Hope you all have a restful weekend,

Michelle

OMG, I can't believe I have forgotten to post about this so far!  I had a another kind of scare - a very real one - recently. I work in a nursing home that has had a confirmed case of legionella and it was also found in the water. We are using bottled water and will be for the next several months.  It's been in the news here and everything.  

I was on the team that helped come up with the emergency plan.  As the leaders were presenting details of the problem to us, my mind is racing away a mile a minute.... the fact sheet they handed out has listed people receiving chemo at the top of the page for those most at risk.  I was fighting panic and could feel people in the room looking at me as they read their little sheets. 

I kept cool until we had a break and then approached the medical director.  I didn't show how freaked out I was but instead asked when (given the sensitive nature of the news) it might be OK to call my onc to share that I had been exposed.  So we talked about it and the doc made me feel a ton better, so at least I could focus on the emergency plan for the facility.

That was over a week ago and although I'm not fully outside the incubation period window, I am really not worried anymore.  But it was a bad scare in the moment!  (This  is also part of why I've been working long hours.. it's always something, it seems. So glad the dust is settling...)

Hello all,  just a quick word about Social Security Diability--from personal experience--find an attorney & let them do all the work.  There is no cost to you, SSD will cover all costs & it will go through much faster.  80% of all folks who apply will be turned down the first time & the majority of those will not reapply.  Only 50-75% of those who reapply will be accepted.  Those are the stats from several years ago when I applied & once I found an attorney who specialized in SSD cases it went through in a snap.  They know all the ins & outs as well as the "buzz words" that get things done and if it has to go to an appeals process they know the judges as well.  Be sure to take a photo of yourself prior to treatment & a current one to any hearing, don't wear makeup or dress up....just go as you feel & be sure to document your daily abilities.  Keep a journal & don't try to sugar coat what you can & can't do, be honest about how weak & sick you really feel.  Make sure you have all your onc notes. 

My employer had long term coverage for 24 months but covered me for 40 months per special request from our legal department but that was due to my fibro & almost 15 years ago.  They did request that I apply for SSD which I did but it took me 3 attempts & an attorney before it was approved.  Once we went to the hearing & the judge saw my before photo & talked with me awhile, I was approve retroactively to my 1st application. 

Not all SSD cases who are approved are required to wait 24-36 months to receive Medicare, depends on your diagnosis, prognosis, & need.  Also be sure to investigate all tyes of Medicare coverage.  If you are eligible for AARP they have some great coverages. Also many states have laws that state that if you are on SSD any company that offers Medicare coverage or supplements, they must offer that same coverage to all on SSD regardless of your age.  I started  on Medicare at aged 51.  I have AARP Medicare Complete & I don't pay anything for my coverage- part B or part D- other than what is deducted from my SSD checks for part B & my total out-of-pocket medical coverage is $4750 per year & that includes all copays.  I reached that early in my cancer treatment & now pay nothing for any of it.  My medication is different of course, but I paid a reasonable co-pay for the first $2000+ (can't remember the exact #) than all until I reached $4000+ (again I can't remember the exact number) but that is long gone too & now every thing is covered.  Anything that is paid by you or "for you" by someone one else is counted during the donut hole.  I found that my Neulasta shots only cost me $493 & my Emend cost $183 & the drug companies paid the rest & their contribution counted toward my total out-of-pocket.  I asked my Center's financial counselor what happened to folks who don't have insurance & was told that the drug companies donated their expensive meds; make friends with your centers financial folks because they know lots of "inside" ways to obtain help!  If you need or think you need SSD hurry & get busy so that you can get on before any "new" rules take place.  Find that attorney & talk to them, your initial visit shouldn't cost anything & they will give you good advice.  Some will even do a home visit if you don't feel up to going to the office.  If you're turned down by SSD, don't give up, apply again & again (preferably with an attorney).  AARP offers good supplements too, depending on what you can afford that don't require any co-pays for anything.  Remember though that at the first of the year, just like with many insurances, it all starts over.  If you are receiving treatment at the end of the year & it is continuing to the next year, some will not require you to start over.  Depends on your polices catastrophic coverage, check that out---again your Center's financial folks are up to date on most insurances & their coverage.   Remember that not all Medicare coverage is the same, depends on your provider & your specific policy.

Just realized I sound like an insurance salesman but I'm not!  Still a nurse even though I medically unemployed.  As a nod toward honesty though, I was a legal nurse consultant but I am not nor was I ever employed by an attorney or group of attorneys.   Also a word to those of you in the health care industry---do NOT let your licensure lapse; even if you think you may not work for a while or ever.  If you do, you might have to retake licensure boards & that's no fun if you've been out of school for a while.  Also if you have not reapplied for your license, SSD board will question if you ever plan to return to work if you are able. 

I asked my onc on Thur. about a Taxol shortage & she assured me that they have an adequate supply & the nurse practioner said she had not heard about the shortage so I suggested she investigate it---little miss (or old lady) smarty pants that I am!!

3bells--Just keep on whining when necessary, we all feel that way on occasion!  I had what we thought was a mastitis that became an abcess.  When surgery was done to remove the abcess that didn't clear with antibiotics, it was found that I had Metaplastic bc & was scheduled for a mastectectomy 2 days later with sentiel node removal due to the extremely aggressive nature.  When 4 nodes were found to be positive, a modifided radical was performed but I clear margins.  I realize that Metplastic bc is very different from IDC but initial presentation may be similar.  I can't imagine not having had the surgery 1st, especially after I read up on Metaplastic!

Rose, don't forget if you are approved for SSD, to consider applying for SSDI.  Of course it depends on your individual family's financial staus, but you may be eligible for several other assistance programs also.  Don't hesitate to ask for assistance.

I had 2 units of whole blood yesterday & am waiting for that "lift & glow"!!  Still so tired that I've slept constantly since the transfusion & still look pastey not glowing at all!  Since WBC is 17,400 I'm going to go out among the others tonight for dinner with friends.  Finally I can have a salad & I'm really looking forward to that.  Hubby & friends may have to nudge me to keep me awake through the meal, but at least I can get out of quarantine.

Love, luck, laughter, peace, prayers, & little SE's to all,

Suzanne

I almost forgot...check out this thread if you really want the inside scoop on getting SS

Insurance and Other Financial Matters - Social Security Questions and Answers

This attorney deals with this issue, full-time, and he has some extremely helpful information.

Michelle

Twistedsteel - I was over the rough part by day 7, except that I did have a problem with mouth sores right from the first round.  My oncologist prescribed generic Valtrex and that pretty much solved the problem.  I did notice a bit more fatigue during rounds 3 and 4. 

Michelle

Michelle, I'm sorry if I confused you with my abbreviations but the main point I wanted to get across to all the girls who are interested is that they don't have to & shouldn't try to go it alone.  An attorney who specializes in & preferably is certified in Social Security Disability cases makes the road much smoother & usually it's a quicker decision with no cost to the client.

TwistedSteele, my SE's were different with each treatment.  #1--no SE.  #2 started with nausea during the treatment that continued for 3 days & required fluids, then tired for a few days.  #3 ok except for tiredness.  #4 ok for 3 days then total exhaustion for 10 days--I slept constantly except to eat.  Never lost my appetite, no metallic mouth, no sores in my mouth, no total hair loss (it broke off at about 4" so I cut it & buzzed it but it's still there), only nausea was with the 2nd.

I'm still awaiting my lift & glow from the transfusions, still tired & pastey! 

Love, luck, laughter, peace, prayers, & little SEs to all,

Suzanne 

I had a good weekend camping with my 10yo girl scouts.  I had fatigue so I was careful not to exert myself.  My other moms pitched in well.  I slept really well and it felt good to be outside so much. I came home Sat night.  The timing was just right because I slept about 12 hours Sat night and started with the bone/muscle aching Sat evening.  The aching was pretty intense Sunday and still today Mon.  Ugh with the aching!!  I'm so sick of feeling sick!  Enough with the fatigue and aches already!  I'm starting to get irritated when I see graditude posts on other boards about being healthy or quotes about all you need is your health or when you have your health you have everything.  Blargh.  OK, I know it's temporary and I am grateful for what I DO have.  But I am tired.  Maybe I need to go back to bed so I can wake up with a better attitude?  lol