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[Glenda]

I have been reading these posting for sometime and felt it was time for me to join in. I hesitated because I also belong to a CML website and it seems like I'm on the computer so much, but I have learned so much from all these wonderful people, so much more than I could ever learn from all my doctors. I have so many medical problems that I don't know where to being but here goes. I am a 60 year old obese white woman with three wonderful grown children and 12 beautiful grandchildren. I have had numerous surgeries: tonsillectomy, appendectomy, gall bladder, tubal ligation, emergency hysterectomy, surgery on both feet, breast cancer in 2000 (lumpectomy) kidney cancer in 2002 (left kidney removed) and was just recently diagnosed with CML (chronic myeloid leukemina in June. I had rheumatic fever when I was a child. Doctor's always told me that I had an heart murmur but as I got older they then diagnosed it as a mitral vavle prolapse. Just within the last three years since I have been going to a heart specialist have I been diagnosed with aorta stenosis. It is getting a lot worse and he is wanting to do an aorta valve replacement. He was wanting to wait until I got my leukemia under control which I have with the miracle drug "Gleevec." All my counts are within the normal range and I am in complete remission. I will probably have to take Gleevec for the rest of my life. From what I read I could have developed the leukemia form the treatments I received from the breast cancer and kidney cancer. (radiation and a chemo called Interlukien II) Of course doctor's won't admit this.

I really need some encouragement from people that have been through this. Even though I have had so many surgeries, for some reason this type of surgery terrifies me. I'm not easy to put to sleep and then once they get me to sleep, I'm almost impossible to wake up. I know this is a very serious surgery.

I have a lot of marks against me but I sincerely believe that God is still in control of my life and He's not done with me yet. The Bible says He won't give you more than you can handle, but I wonder sometimes. But through everything I know He's still on the throne. and God is my comfort and His loving arms are around me at all times.

I didn't mean to write a book! I promise in the future my postings won't be this long.

One of my favorite scriptures is Psalm 23:4

Even when walking through the dark valley of death I will not be afraid, for you are close beside me, guarding, guiding all the way.

Glenda

 

[Zazzy]

Hi Glenda and welcome,
Gee... your story fits mine almost to a tee! Except I had heart disease first and went from there! Heart disease, CML, breast cancer, appendectomy, breast reconstruction, back surgery and my newest one: Hyperreflexia.. another rare disease.

I also have CML... and have been on Gleevec since June, 2001 when it was first approved for public use. What CML list do you belong to? I belong to four but am a moderator of the Yahoo Asian CML support group, although of late I have not been onlist much because of health problems.

I don't know if you developed your CML from the other problems, I think I had it before I had my heart surgery (mitral valve repair) because my surgery was postponed five times because of a high white count. I do know that my docs think that my breast cancer was a result of the strain on my body from the heart and leukemia issues. I had a mastectomy in 2001.

I notice that you say you are in remission... GREAT!!! Are you in CCR and MR (molecular remission)?

BTW I had most of these surgeries after being dxed with CML... I stayed on Gleevec the entire time and have had no problems.

Would love to hear from you.

Take care,
Zazzy

 

[Glenda]

Hi Zazzy, I am so glad that I finally got to talk to you. Anjana had been telling me about you. I've tried to get on the Yahoo Asian CML support group site but can't seem to get in. I'm not very computer internet smart. I tried to go through Yahoo and it keeps asking me for my Yahoo ID and my password. I put it in but they keep telling me that's not it. The CML sites I use are www.newcmldrug.com and the European site.

It is weird how much we have in common. I really don't know if that's a good thing! What is the new rare disease that you have?

I was diagnosed in June with CML, started Gleevec in July and by December after the last F.I.S.H. test I had 0% Philadelphia Chromosone. That was a great Christmas present. What is the difference from CCR and MR remission?

Love and God Bless, Glenda

 

[Nancy]

Hi Glenda-

Welcome to the site. It's really a great place. You'll love the support here. I'm so glad you and Zazzy had a chance to talk. My husband is the patient here and he's had 3 valve surgeries and also a ton of other stuff.

So glad you joined.

Ask lots of questions, we have lots of opinions

 

[tommy]

Glenda,

Welcome to this wonderful site. You are member Number 800! Sounds like you have a lot going on. Hang in there. Write as often and as long as you like.

I like Romans 5:3-5.........trials, endurance, character, hope.

God bless you.

 

[Zazzy]

Oh so you too know Anjana... she is great isn't she? I'm not sure why the link won't work for you. That is very strange. Have you told Anjana this?

Hyperreflexia is my new disease... It causes tremoring which can be quite exhausting. I just went through a bout of it last week.. and is the reason I haven't been around much. I go to see my neurologist next Friday... I hope that he will adjust my med dose.

MR seems to be a good thing or a bad thing depending on who you ask LOL. It means that there are just trace amounts of CML. It has been reported on the board that Dr. Druker isn't too enthralled with MR... he seems to think that people put too much hope in it. I hold on to it dearly though.

I went to Seattle last summer to be evaluated for a SCT (after my onc insisted). They said that they didn't think I needed to go through an SCT (WHEW!), but also wrote to the onc to tell him that he needed to keep a closer eye on me than he has. They say that if you slip out of remission after being on Gleevec that it is harder to fight. I certainly hope that this isn't true.

I was on Interferon injections (twice daily, 10 mu) and it literally knocked me on my butt! I was so glad that Gleevec came along!

I will keep my fingers, toe, eyes and everything crossable crossed for you!

Take care,
Zazzy

 

[ALCapshaw2]

Welcome abouar Glenda !

Several of our participants believe / suspect that radiation played a roll in their Heart / Valve diseases, most from Hodgkins Disease Treatment with radiation, but also one member who was treated with radiation for a lung problem and anoter for some other problem. Johnny Stephens has posted some links to papers documenting radiation damage to the heart valves and arteries.

'AL'

 

[SHerrin Hutt]

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New

Welcome Glenda
My thoughts and prayers are with you. You have a full plate for sure. My problems started when I was 40 yrs old. After staying home till my two girls were in school. I started working in 92. That was the first time I heard the mitri valve prolaspe. After many-many hosp. visits. I've been in most of our hosp. and seen almost all the cardic phy. in the area. I have had uncontroable B/p since 92. I have been to other hosp. for help. IUPUI in Indy -Cleveland
Clinic -Mayo Clinic. For the B/p problems. Then in 98 my heart started giving me trouble. My primary phy. made me quite work and go SS Disabilty since 94. In 92 I had my first stroke and in 99 I had my second .Then ther was the valve repair at CCC and then the repalcement in 02 in Louisville. There are mile line of other thing I have but I just thank God I wake up every day. And you know the worst thing I have done was surgery on my hand in 10/03. I would never do it again. What I am trying to say that everyone here has their own story. We will listen and not judge.
The effect the problems have on you are how you handle them. There is a great book I read before my surgery Called
THE HEALING HEART My Dr. OZ.


Sherrin Hutt