CSN Login
Members Online: 9

Camul - Miss Carol, Check in with us - when possible.

VickiSam's picture
VickiSam
Posts: 8291
Joined: Aug 2009

Carol - We have been thinking about you - we are surrounding our "Pink Wagons" - with support, love, and prayers.

Please check in when time allows.

 

Vicki SamKiss

New Flower
Posts: 4045
Joined: Aug 2009

Hi Carol,

 I hope you are still on Femara and feeling better

hugs

camul's picture
camul
Posts: 2079
Joined: Dec 2010

My muscles, joints, and bones are still about the same. Increased the pain patch dose from 50 to 75 mg It helped with the bone pain, not so much with the joints and muscles. When I saw the pain doc, 1st thing out of her mouth was "you are on Femara". She said I have the walk, and I need the cane as my legs are so tired. The right leg from mid calf to upper thigh swells and throbs by mid aft. daily. Could be from rads? No one can say, but it is heavy and sore. Got a call 2 weeks ago tomorrow from med supply. They were going to drop off the oxygen, wanted me to pay and then get reimbursed from medicare. I said no. They said its only $110. month. They called me by wrong name and said some other Dr. ordered it. Then they called back last Monday and said they now couldnt deliver the oxygen unless I had a new oxometry testing done as it was over 30 days and their company didnt administer the first test (the hospital did). They wanted me to pay for it up front. They only charge 39. for the test. I asked the cost of reading the test and getting the results, they said theynnd it out to a third party who would be in touch with me with the cost. Yet they wouldnt use the test that the hospital did. I told them to shelf it, that my dr. would be using a different medical supplier. so 7 weeks later and I am still waiting on that to get done. I got a call last Wed. from the pharmacist at the University cancer center (Huntsman Center), he ison the blood clot team monitoring my Coumadin levels. The levels were too low so they increased it, he had me get it tested Thurs, now it is too high. It has been off for the month I have been on Femara! Dont know if there is a correlation or coincidence? I told him have to do RX by mail. He sked all meds I am on. Told me not to order it yet, he would get right back to me. Told me to call the RX company and get 90 day cost. 4 I nn to do thru mail order come to $210. He called back about 10 minutes later. said cost price thru hosp. pharm is $144., Costco cash price is $105. Called my RX benefits plan and was told,so, then pay cash??? With the cost of the pain meds and vit D, I have been paying out about 125-150. per month. Now I will be paying $149. for 3 months! Also the co pay for Fentanyl patches is $50. for generic, $10. for brand name. Thought I should pass this on. My co-pay for Cipro is $10. Cash price at hosp. pharm or wal-mart is $4. For those new to all of this, please ck this out, we figured out, over the last 3 1/2 years, I have paid out close to 5k EXTRA in co-pays, bcuz I didn't know! For close to a year I paid $109. a month for Generic Fentanyl, had to get 25 mg and 12 the

camul's picture
camul
Posts: 2079
Joined: Dec 2010

patch is not made in 37.

Thanks for caring. It has been frustrating. I have learned that so many questions cant be answered because they dont know! I can ask 3 drs. the same question and I get 3 different answers!

Hugs to all,
Carol

aisling8's picture
aisling8
Posts: 1276
Joined: Feb 2010

I'm glad you're on Femara, but wish you were side effect free.

That'ts pretty amazing the disparity in medication prices. Glad you got some help with it.

Sending positive thoughts and prayers your way.

xo

Victoria

SIROD's picture
SIROD
Posts: 2180
Joined: Jun 2010

Carol,

Did you try a Medical Supply store in your area to check on their price for oxygen?  

My son had cluster headaches last summer (they are the most painful of headaches, more than migranes) they last about 3 months and the pain is so excrutiating little helps.  The pills that helped were $189 a prescription of 9 pills.  After asking around and researching I was able to get them for him for $20.00 for 9 pills.

 Oxygen is another help for the pain.  I called around and the different medical supply place and finally found one that was $17.75 a tank.  He had no insurance at the time to cover all of this.  He had a little cart that he rented (very cheap) to put the tank on so he could take it to work.  He never had any type of test to be able to use the oxgen.  

Have you asked your Cancer Care place for help with the medications?

Doris

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

So sorry, Carol, that in addition to all the physical difficulties you're faced with that you have to also try and figure out how to get and pay for the help you need.  Do you have a patient advocate through your health insurance who can help you sort some of these things out?

Good to hear from you nonetheless. 

Suzanne

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I am so so sorry that insurance medical equipment companies are making things so difficult for you in a time when they "should" treating you with kid gloves and treating you kindly and make things easier for you. And to top it off to have all that pain.

I really do hope they can figure things out for you. Is there a  decent, knowledgeable social worker available to help you? I wish I could help.

Take care dear Carol. We are all thinking, praying and wishing you help and good things.

VickiSam's picture
VickiSam
Posts: 8291
Joined: Aug 2009

to go thru -  heck, I am so so so sorry.  Doris, and Cinnamonsmile make valid suggestions - medical supply store, and social worker to help you maneuver thru all the mess.  

What is that song ..  take 1 step forward,  and 2 steps back (ny Paula Abdul)  - dang, I bet you feel like this is your anthem.   I truly wish there would some type of magic sprinkles I could send your way.

You continue to amaze me, You are truly my HERO - without a doubt.

Keeping you close to my heart, and in prayers dear sweet Carol...  Praying for easier days for you, as well.

Vicki Sam

camul's picture
camul
Posts: 2079
Joined: Dec 2010

Thanks all os you. I finally redid the test last night, the gal is pickingnit up shortly and they are billing Medicare. Funny, when I just said no to paying up front, they waited 2 days, called back and said they would bill them. I was very clear that I do not have the cash to cover it! It is mostly frustrating.
I have been on Femara for 5weeks and a couple of days and have another UTI. I have not had one since stoping chemo. I am sure that is adding to being so exhausted.
Mostly all of this is frustrating. I am frustrated w/myself also for being so trusting. I just helieved that people are honest and do the right thing for others, especially when they are sick. Yet I should know better, I have been dealing with thisnfor so long...
Now I am going to get my coumadin levels checked and tested for a UTI. First one since stopping chemo in May. Tried tons ofnwater, juice etc. but had to call as it is in my back now. Just dont want to give up on the Femara yet! New nurse was kind of funny, trying to see if I know what a UTI is, so after 5 minutes of questions, I finally told her I had 11 in 10 months on last 2 chemo's and about 19 in last 3 1/2 years, along with bladder resection and rebuild.

Then she said she wouldnorder the urine test and if positive anculture. She laughed and said, she has only had 1 in her lifenwhen she was pg. lol That is one of the hard parts of going with new doctors... hoping they can get me on cipro soon. She said may have to try a diff one if cipro affects coumiden. Each med messes with another...
So off I go!
Just hope Inhave helped others with the info on prescriptions, that just because it is a only a co-pay thru ins. it does not mean it is the best deal!!
Thanks apl,

camul's picture
camul
Posts: 2079
Joined: Dec 2010

Had blood work done, coumaden levels went up again. Dr. thinks could be Femara. Cut the coumadin down this last week and it is 4.1. They want it at 2 to 2.5. .
Did the oxygen test overnight. Got the results. my oxygen dropped below 87 for 1/3 of the 8 hours. when I was awake it was 96 -99, and again dipped to 82 so many times every hour. So they will come Monday to set it up. They wanted to come tonight btwn 10 - 11p. Told them I have had apnea all these years 3 days wont make a differnce!
Have to wait til Sunday or Monday with UTI. Dr. doesnt want to start an antibiotic until they culture it... so that is the story now. And the oxygen company is billing Medicare!

cinnamonsmile
Posts: 1049
Joined: Dec 2010

So glad to hear you are getting your oxygen and that they are billing medicare!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network