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Femara update

camul's picture
camul
Posts: 2066
Joined: Dec 2010

Thought I would give an update. Had to stop Femara. Lasted about 7 weeks. Bones, muscles and joints are so sore, cant lift my arms over my head. Pain Dr said it won't get better and it will take about a month for se to go away when they are this bad. Onco says should go away in 5-6 days, I tend to believe the pain doctor.
Right leg is still 2x the size of left, from rad tattoo on calf to hip. Both say lymphedema and suggest a stocking during the day, cant even reach feet to put on socks. Will see what the le specialist says and will have to have someone come to put it on in the am.
Was on Cipro for IUD, that threw off the coumadin levels, bouncing between 1.5 and 4.1, now testing 2x a week. Says there is no real science will need to keep changing dosage until we get it back to 2 -2.5. He says have to really watch for internal bleeding and blood clots, said it will help with clots but no guarantee that I won't get more as blood clots can come from the cancer, anti-hormonal meds, as well as inactivity. Was told to exercise, but keep off my feet because of the swelling, so I exercise laying in bed.
Started Oxygen. Can't tell if it has made a difference. I am too worn out from fighting the pain. Trying so hard to be active, but honestly the only time I even feel good is when I am sleeping. I wake up happy, then try to get up and it all starts again. I keep trying to find community activities that may spark enough interest that makes me want to get up. I am working so hard trying to stay up! But honestly feel I am losing that battle too.
He tried to get me in a Acupuncture trial, but I do not qualify because I am stage IV. He said research has come so far, I said not for stage iv! I explained the numbers, how less than 3% of the monies is going to stage iv research. He was surprised so I gave him some sites. ie. Metavivor.com He does research and comes from NIH. I asked him if he would help me find a trial. Currently there are none at this cancer hospital/center for stage iv. I agree overall there is a lot of recognition and trials for stage 1 - 3, but not so much for stage iv. This past year was a little higher, because money was committed prior to grants being cut. He cant find anything that I qualify for.

hope67's picture
hope67
Posts: 166
Joined: Apr 2013

I am so sorry for all you are going through. Especially for the pain. I don't have any words of wisdom, I can only offer you my support and my positive thoughts.

Carmen

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Carol,

I am so so sorry to hear of your continuing trouble.

If you are on Medicare, they will not pay for lymphedema garments, but there is someone that posted something on breastcancer.org about a letter to cicumvent Medicare not paying.

I have heard that Medicare, will, however, pay for a pump. I am not sure about the out of pocket costs though.

 

debi.18's picture
debi.18
Posts: 849
Joined: Jun 2011

I'm so sorry you are in so much pain.  It's so sad that there isn't more research and trials available for Stage IV.  You are in my prayers and thoughts each day!

Hugs, Debi

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

I'm so sorry Femara acted like the other AIs you've had and you can no longer tolerate it.  Sending all the good mojo I can muster up.

Suzanne

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

I stopped Femara 2-3 times to have a mini vacation from the exact painful experience you had.

It took 3 weeks for the pain to go away and once I rebooted it took 3 weeks for the pain to start all over again.

Some insurance will pay for lymphedema garments, some will not.  Medicare doesn't pay for the garments but will pay for treatments.  Though I do the exercise the rehab place thought me and do them and wear my sleeve and glove, I think my arm is increasing.  There are organization for breast cancer that will help pay for the cost of the garment.

I am so sorry Carol that you have so much pain.  I wish that I had a solution for you.

My very best to you,

Doris

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

It is sad to hear of all the things you are going through. I reallly hope you can find something that interests you so that you can keep moving. I will keep you in my thoughts and send you some positive energy.

Hugs,

Georgia

CypressCynthia's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

I am so, so sorry for all you are going through.  I hate to hear about your pain.  Can you get your onc or a pain specialist to help with that?   Just thinking you might feel more like being a little active, if you could get a handle on the pain.

Cancer sucks and Stage 4 sucks even more!  Praying for you and sending lots and lots of hugs.  You are one of the strongest and most amazing ladies on this board.  I admire you so much; your spirit shines through in your every post.

New Flower
Posts: 4019
Joined: Aug 2009

I am very sorry and hope you will reach out for lymphedema treatment. please see if you find this link helpful. there are some stretches and mild exercises that can be performed in bed or on the floor without standing.

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

Sending you a big hug

camul's picture
camul
Posts: 2066
Joined: Dec 2010

The pain is better today. I finished the Cipro and ran a fever again on/off for 3 days, It broke finally. It was 100.5 with Tylenal, would go to 100. Drank so much fluid, feel if anything was left in my kidneys I would blow it out of there. Think the fever was contributing. Now I am mainly tired but my muscles do feel better today. Was told not to start the Arimadex until all the pain is gone. Kindof laughed at that one. It was like being asked where did I hurt worse Monday. I laughed and said it depends on where you touch me. There wasn't a spot on this body that didn't hurt.
So...we will see. My right leg is not as swollen. Now I know why lympadema is so miserable. I might as well experience all the symptoms of all side effects... I am laughing.
Honestly, this disease does totally suck. And today I opened the mail, new bills from new Cancer center here, to learn that my supplemental insurance has not paid at their facility, so Monday morning I get to spend finding out why. They have covered so little as a supplemental policy.
If any of you got the supplement on cancer and the expenses over and beyond what medicare and insurance covers, it is one of the financial specialists who was saying how well they work with their patients and how this disease can wipe people out?? Well he is the one who I will be calling as he is over the financial /insurance matters at the new cancer centers. It was the pharmacist from this team that told me about always asking for cash price along with ins. prices, and so far will save me over $1200 dollars a year on prescriptions. They have been wonderful so far!!
One thing about this disease is that almost everyday there is something!!

Good Night Everyone,
Carol

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

Carol, the time of your post is 4:43 a.m.?  That's not night!  Are you not sleeping?  I also didn't know you were going back on Arimidex.  Hope you tolerate it better than the Femara.

Re clinical trials and research for Stage IV.  I just don't understand why funding and research isn't there.  Of course, we want to figure out how to keep peeps from reaching Stage IV, but it is very obvious that some do in spite of early stage clinical trials.  And some people are Stage IV from the time of diagnosis, so come on people, let's stop thinking only about prevention and early treatment/cure and let's put more effort into killing the beast when it is at it's beastiest (that's a new word)!

Hugs,

Suzanne

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