[Frankie]

Jack…
I always felt a bit safe knowing RARS doesn’t turn into Leukemia.
Surprise! Surprise!
I was on Revlimid and went without transfusions for over a year.

Frankie

[Frankie]

Thank you so much, Jack. You made me feel a bit relieved. I see the doctors tomorrow They have a few trials going on there at the Cancer Center. But, I may opt to do nothing.
I bought a digital tape recorder so I can tape everything they say. My memory isn’t the greatest these days.
I kinda wondered about my MDS turning to Leukemia. I have a lot of bruising and spent 6 days in the hospital for a cat scratch. But I was told that MDS RARS doesn’t progress to Leukemia. I’ve had it about 14 years.
Thanks again, Jack.

Frankie

[Frankie]

I just found out last night that I have AML….have had MDS for years.
They want to rush me in and start treatment. I know nothing about AML and I’m scared to death….basically of pain. Can someone point me to a site where I can get info on exactly how it’s treated?
I’m afraid to even talk to the doctors at this point.

Frankie

[Frankie]

Excuse me…but I disagree with you.
I have always received Leuko-reduced, irradiated blood and have 5 antibodies.

Frankie

[Frankie]

Binnie…
I also put it in my fav places but it doesn’t work….grrrrrr.

Frankie

[Frankie]

I really dislike having to sign in each time I want to check the board.

Frankie

[Frankie]

This is interesting.
I often have nose bleeds. One doctor suggested that it’s because my platelets are low
and that I have sinusitis.
Today I see another Ear, Nose and Throat specialist to find out what to do when I pass large clots.

-Frankie

[Frankie]

Oy…I must be on crack….that should read 2006.
:::Hanging my head in shame:::

-Frankie

[Frankie]

In 1996, I had a CT scan of my abdomen and my spleen was 19 cm.
It’s smaller now…but by how much, I don’t know.
I asked about radiation and my doctor said no. I have had periods of great pain and it felt as though my spleen was rubbing against my ribs.
My doctor is against a splenectomy because it would leave me open to all sorts of infection.
I would have to be very careful around pets and my granddaughter who might be carrying some illness from the playground….sigh.
Since I am no longer transfusion dependent, my spleen doesn’t act up and it looks smaller.

-Frankie

[Frankie]

Hi Zoe…
I wasn’t on the program. My Medicare and MediCal paid for it. I meant to write that Revlimid is a lifesaver.

Give this a try:
http://celgenepsc.com/pat_free.aspx

Good luck to you.
-Frankie

[Frankie]

Amen to that, Jack.

-Frankie

[Frankie]

Hi Lynn

I have never heard of Epival. If I were you, I’d research it thoroughly.
Also, I’m sure that the makers of Revlimid have a program for those who cannot pay.
Please check into this. It’s been a life saver for me.

-Frankie

[Frankie]

Hi

In the last 4 years, I’ve had pneumonia twice and lots of bronchitis brought on by my smoking for many years. I now have COPD. My joints ache…from what I’m not sure. I have Osteopathy….a “prequel” to Osteoporosis.
I think I have side effects from the Exjade I’ve been taking. I have searing pain in my lower back…pulsating pain.

God only knows what other things have been brought on by our immune systems being so crappy. In the past, I had a mastectomy and a lumpectomy.

Of course, my age might have something to do with it. I’m 66.
Oh…I just found out I have cataracts. I’m having bad bowel problems and I’m scared to death to have a colonoscopy.

I have learned to hate my doctors. I’ve had problems with them hearing me and understanding.

-Frankie

[Frankie]

Jack..
I honestly don’t remember what his reason was….sorry.

-Frankie

[Frankie]

Hi Helen…
I’m trying to remember how along ago it was that my spleen started enlarging….maybe 7 years ago. It was very painful and still today, it is uncomfortable. It was up to 19 cm…after a CT scan….very big.

It seems smaller now after the Revlimid and absence of transfusions….but it’s still large. I, too, have infarcts….but it is nothing my hemo is worried about…shrug. I asked about radiation and he said no.
It feels to me (because of its size) that it’s pressing on my stomach and large intestine. I dread having a colonoscopy.

-Frankie

[Author]

Posts