Myelofibrosis

Seems we're in the same place. Doing research, trying to be pro-active. It's wonderful that your husband is of faith also. What can you do for me? Please pray for my husband, to receive Him and the faith he needs.

The specialist called tonight, seems Allen's blood tests, and enlarged spleen, liver, hasn't changed in over 2 years, and his JAK2 is negative. She agrees not to take hydro right now, what and see. Said, can't hurt taking Vitamin B12, however, after hearing your experience, we'll keep an eye on the white cell count.

This really confuses me, since I heard that JAK2 is positive in this disease, so my question, is does my husband even have this?

The past few days have been wonderful though, when I needed hugs, they were there, even from simple acquaintances who don't know anything. God provides everything, and knows when we need those smiles, if we can't trust Him, there's nothing.

I will continue to pray for you and your husband, and everyone who has this. If there's anything I can do for anything please let me know.

Much love.

We will pray for you and your husband too.

My husband does have the JAK2 mutation. The chemo that he took was for the JAK2 mutation.

I'm having trouble with my dial up connection on the internet, hope this goes this time.

I was so glad to hear someone writing to you and saying that he had myelofibrosis for 15 years. That is much better than what we found on the internet.

It really helps to talk to you. Thanks!

Take care!

I really agree. When I heard 15 years, I cheered, it gives hope. Actually, when I first read your messages, it gave me hope as well.

Most of what I've read on this message board depressed me, people are really sick, and I can imagine what their loved ones are going through.

Perhaps some others reading about us, will feel some hope.

What I found on the city of hope website, is inspiration. There's the one page about a person with this, in really bad shape, who was denied the transplant by all the places he went, until here. They gave him a stem cell transplant, and now he's perfectly well. Seems that's the cure for this. This is the one hospital that will give transplants regardless of age and condition.

I would encourage you to find out about the procedures here, if it comes to that. Note, I say if. There's no certainly with this disease. Just trust your faith, did everything you can, and enjoy life.

Thanks for being there with me.

Hi Dr. Agavon,

Wanted to ask how you're doing. Your message was one of hope, and also peace.

Are you taking any meds? The doctor recommended hydroxyocurea, but with the side effects, she agreed to hold off doing this until some symptoms, namely blood counts change. Also, his JAC2 is negative, so everything is puzzling to us right now.

You're right though, enjoy. My husband is working full time, he's 65 yrs, I'm 59, and we're enjoying our time together. expecting much more of it to come!

Still, waiting and not doing much is hard. She said though, it wouldn't do harm taking Vitamin B12, so we'll try that to boost the cells.

Thanks for being there. Please let me know how you're doing. How is your family handling this? It really puts things in perspective, doesn't it? What's important... people, friendships, love, and heart? All of the above, isn't that what life is suppose to be about?

Take care.

I am taking no medicine on the advice of my Onc. She explained any medice taken has the risk of side effects. So as long as I am feeling fine why take that risk. This desiese is incurable, so none of the medicines will make any difference on that front. Since all they can do is treat the symtoms, and you have no symptoms, what would be the point?

Dr.Agavon (not a real doctor bu I play one on the internet.)

Hi Dr. Agavon,

I really think that some patients could know more than the doctors, so I'll just keep calling you Doc.

Thanks for what you said about taking meds. That's exactly what my husband said, that chemo pills are too harsh, and kills the good along with the bad, in other words, why be sick now? It might even trigger what we're trying to avoid.

All that said, I'm finally agreeing with him, you, and many other people, since there's no symptoms, not even JAC2 positive, just enjoy life, change our eating habits, and trust in Faith.

He's starting Vitamina B12 tomorrow morning, with a blood test in a few weeks, so we'll know more then.

Actually, I'm the one with the symptoms!! I'm the one who's so very tired, not sleepy, just tired, he's the one mowing the lawn, cleaning off the leaves, taking care of everything else, and working a full time job. But I'm not fooling myself either, just really watching and researching.

Hope you're feeling better Doc. Please keep in touch, you're inspiration for so many here.

You are an encouragement to me.
I retired from teaching so I could spend more time with my husband and keep up with the schedule going to M.D.Anderson. But this also gives me more time to not have my mind so full of things that need to be done that I worry more.
We do enjoy each day more and appreciate each other more.

Hi Retired Teacher,

So glad to hear from you again, was wondering how you're doing. Hope you were writing about someone else on the message board, how could I be an encouragement to anyone?

Actually, you're the encouragement I needed a few weeks back, and still need. I'm just reading up research, then not looking at what the doctors say. There's a few people on the board who are still symptom free, many many years, I expect to be one of the those.

Just on vitamin B12 for now, and he's the one who feeds me the eggplant, broccoli, the healthy stuff!! Happily so.

I know, with past experiences, that God takes care of us, of everyone, and I'm trusting His promise that He hasn't brought us this far to let us down now.

Please keep in touch, and let me know how you're doing. Personally, it's harder at night, that's when negative thoughts creep in. I must try harder to find the positive ones.

Take care.

Very Hopeful,

You are the encouragement to me.  It is nice to know that there are others that are seeking to know more about this disease.

We are doing good. My husband continues to work each day.   We are getting ready for Thanksgiving.

We were to go back to M.D. Anderson Nov.29, but the doctor's office called and said that he was not going to be there.  We have rescheduled for the 4th of Dec.  The doctor had said last time, that if Lee's tests look good this time, our next visit would be in 6 months.  That is the longest time between appointments. (It has been 4 months from our last appointment.)

I pray for you and your husband.  I too believe that God has a plan for each of us.

Thanks for keeping in touch.

Your older message mentions memory problems.  I couldn't find the message you were answering to, but would like to know more about memory problems.

My husband is 76, dx 10 yr ago with polycythemia vera, and had blood removed every week, then monthly, a Spinal tap about 5 yrs ago, put him in the Myelofibrosis category, understand that Lukemia is next step, then his spleen and liver took over and started to enlarge and are continuing to do so, and taking blood no long needed, causing of course loss of appitite and other stomach problems, bowels. He has had 3 pnemonias this year, with the last one in August, and  at that time a catheter was placed, and life is a little better but not much.  He was just put on Ambien CR because with Ambien he'd sleep till midnight, then be up every hr, as if he didn't have the catheter, he just gets up, of course with great effort, and goes gets something to drink, and if I hadn't installed door alarms, he'd be out walking the street again, which is what cause the Aug. pnemonia. I can get up and to him before he's outside with the alarm going off, and now I move the big chair over in front of door, the first time it goes off, not the 3rd time in one night. .  But the Ambien CR isn't stopping the getting up from 1 to 6, then after pills, breakfast, and we do have a home health monitor that weighs, takes vitals at 8, and then he's back to sleep for awhile, then up every hr or so during the day also.

Well, when I started this I wanted help in menory loss, confusion help. Because I also have a room monitor, and just went in cause I heard a strange noise.  He didn't recognize me, thinks he's someplace else and wants to get out of here, wanted tv off and removed the night light I keep on so I can look in on him.

Still need to hear from anyone that can help with ideas on that. Basicly when this started we were told it would shorten his life by 10 yrs, but no one can give me an idea how this is going to play itself out.  Has anyone been through the final years with this.  I just need to know what I can expect, would make it easier to face.  I want to keep him at home as long as I can, once he no longer can get out of bed, is when I'll look for to someplace else.  Do have home nurse coming in once a week, because of the catheter care 

Thanks for any response you'd care to make.  Iowa Wife.