Myelofibrosis

 

On 11/17/2007 IowaWife wrote:

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.

 

When I was on Ambien I woke up all nite long, sat up and slept on the side of the bed.  I also hallucinated, and thought there were heads on my nightstand and people with masks on in my room.  I now take ativan and benadryl to go to sleep and that seems to work for me.  I have heard that a lot of people have this problem on Ambien.     Hope this helps!   Jane

 

 

On 11/16/2007 retired teacher wrote:

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.

Hi Retired Teacher,  So glad to see you've posted again.  And even happier to hear that things are going very well, imagine, 6 months.  Actually, 4 months is great, 6 months is terrific.  When you said the doctor was not going to be there, I really felt the message that your husband will receive full restoration, as well as perfect health for both of you, God is certainly on top of this.  This Thanksgiving will be a time of true thankfulness.

My own husband is feeling just fantastic, no sign of anything. He's taking Vitamin B12 daily, and will be seeing our regular doctor in a few weeks.  I'm still doing the research, and writing letters to Mayo Clinic, Cancer Treatment Center, and City of Hope to encourage research for this.   I'm feeling less nervous and upset, trying not to go back to being so scared of what if.....  just trying to enjoy our time, our life.  Trusting God for everything, I know He hasn't brought us this far to drop us now, He'll take care of us, and I know He'll take care of both of you as well.

While we have no family around, and our daughter (on the West Coast) usually doesn't come for the holidays, our close friends have asked us for Thanksgiving with their family. This is indeed wonderful.

Have a happy turkey day, and please keep writing, don't let go.  My prayers are with both of you.

 

Very Hopeful,

I'm sorry that I didn't make it clear that the reason that we needed to change our appointment was we needed to be there (M.D.Anderson) when the doctor was there.

Thanks for your excitement. 

Have a nice Thanksgiving.

I'm so glad that I can write to you.   Thanks!

Retired teacher

I am 58yrs old and was recently diagnoised. I went to the Moffitt cancer center in Tampa,fl and they referred me to the Mayo Clinic in Rochester,Mn where there is a group that specializes in MPD. My hemo. level was 11.2 in April which led to a bone marrow aspiration and diagnosis. My spleen is slightly enlarged and my hemo.level has been in the12 range but I have no other symtoms. The recommendation is to wait and watch rather than start any of the therapies that have various side effects. We are in the process of finding a bone marrow donor and will do this before I get to old(65/66) or to sick to have this procedure done. It's the only possible cure and has risks with it, but the alternatves are debilitating and eventually fatal anyway

 

On 11/29/2007 islander wrote:

I am 58yrs old and was recently diagnoised. I went to the Moffitt cancer center in Tampa,fl and they referred me to the Mayo Clinic in Rochester,Mn where there is a group that specializes in MPD. My hemo. level was 11.2 in April which led to a bone marrow aspiration and diagnosis. My spleen is slightly enlarged and my hemo.level has been in the12 range but I have no other symtoms. The recommendation is to wait and watch rather than start any of the therapies that have various side effects. We are in the process of finding a bone marrow donor and will do this before I get to old(65/66) or to sick to have this procedure done. It's the only possible cure and has risks with it, but the alternatves are debilitating and eventually fatal anyway

Hi Islander,

I know exactly how you feel, in total shock, especially having no symptoms.  That's where my husband is right now. I've researched so much and have come up with nothing new.  You're right in finding a bone marrow donor now.  The Mayo clinic in Rochester, Mn are experts in this rare disease.  Also, the City of Hope in California, www.cityofhope.com  are also experts, especially in stem cell and bone marrow transplants, and will do them on any age patient.  Please check their website, it's good to have backups, since so few hospitals even know anything about this.  My husband's specialist wanted him to go on hydroxyurea, a chemotherapy pill, with strong side effects. Our family doctor said, wait because the side effects could be harsh, and there's no proof that it will work.  Right now, my husband is absolutely fine, except for the enlarged spleen and liver that he's had for many years (2-3 at least), he's working full time and has more pep than I do!  He's 65 yrs, I'm practically 60 (in a few weeks), and I'm the one with the symptoms, totally tired!

Someone on this message board said to take Vitamin B12 daily, it might boost up the cells, so he's been doing that, and we'll have a blood test in a few weeks to see how that's doing.

How is your JAK2? Positive? That's the main indicator of this disease. My husband's is negative, meaning, there's no indication in his blood of this disease, the doctors are just going on his bone marrow which showed some fibroids.

You're so right though in finding that donor now, then you're be in a good position.  While my husband took this news well, I thoroughly went to pieces and starting on this board, finding much encouragement.   All the experts said, 5 years from diagnosis, but many people here are still going strong after 10 yrs, showing the "experts" don't know that much about this.  It's so rare I guess.   There's been much inspiration  from some special people, one is 67 yrs, feels great, and said, that everyone has a time table, just enjoy life and trust God. He hasn't brought us this far, to drop us now.

Although I believe that, I still went to pieces, but am doing better now.  Please keep in touch, there's many here who will help you.

My prayers are with you.

 

I did test positive for the JAK2 as 50% of us do, but my other cytogenics are OK, placing me in the "low risk" catagory, whatever that means. The hardest part is not knowing,but I'm thankfull for the time to prepare to fight this disease. Every day is a blessing. 

Dear Islander -- We could be twins! I was diagnosed in August. I lost a lot of weight over a two year period and my husband and kids forced me to see the doc. My RBC, Hct and Hgb levels were low, RDW high. But it was the BMB that finally tipped the scale to a dx of PMF. I also am Jak2 neg. Oh yes, and I just turned 58. I am female; how about you?

We are also in the watchful waiting mode. I am in a study at the University of Utah where hematologist/MPD specialist Josef Prchal (yes, the spelling is correct) is the primary researcher. Consequently my BMB was sent to various universities, including the Mayo & MD Anderson, for pathologic confirmation. In many ways, it was a relief to have a firm diagnosis.

Since I am asymptomatic (except for the weight loss, slight splenemegaly and odd CBCs) I'm only getting a monthly blood draw, seeing the team of docs at the Univ 3x/year, and my local oncologist on an as-needed basis. I am not looking into finding a stem cell match at this time. 

My husband and I spent a solid 5 weeks, between initial diagnosis and confirmation from the specialists, learning all we could about MF. We were almost numb trying to learn the language of hematology so that we could research properly. We actually created our own glossary and quizzed each other. 

I've been lurking on this site (and others) since early August. This is my first posting. Best of luck absorbing all the new info ...

Karen 

I'm a male and was diagnoised in August. The finding of the blood marrow donor is just for peace of mind. I hope to not need this for at least a few yrs. Hopefully some of the research in stem cells will create other options. Best of luck, Pat 

 

On 11/30/2007 islander wrote:

I did test positive for the JAK2 as 50% of us do, but my other cytogenics are OK, placing me in the "low risk" catagory, whatever that means. The hardest part is not knowing,but I'm thankfull for the time to prepare to fight this disease. Every day is a blessing. 

Hi Islander,

Low risk is wonderful, and I totally understand what you mean by "not knowing".  I applaud your actions.  We're just going on with life, I feel I've done everything we could for now, let the Lord take it the rest of the way.  My husband will be having a blood test in a week or so, then seeing the our general doctor, who I trust more than the specialist, and see what he says.

Time is on our side, and being optimistic in spite of what the general info is, keeps us going. 

Please keep in touch and let me (and others) know how you are.  Any questions, don't hesitate to ask.  I'm grateful I haven't been kicked off here yet, for a few days going I posted tons of messages, to everyone I read about here, asking for help.  I'm calmer now, and thankful there's a place to go to complain, to cry, to rant and rave, to ask plenty of questions, and then to get responses that are helpful and supportive.

Thanks to everyone.

 

On 12/1/2007 Garnetta wrote:

Dear Islander -- We could be twins! I was diagnosed in August. I lost a lot of weight over a two year period and my husband and kids forced me to see the doc. My RBC, Hct and Hgb levels were low, RDW high. But it was the BMB that finally tipped the scale to a dx of PMF. I also am Jak2 neg. Oh yes, and I just turned 58. I am female; how about you?

We are also in the watchful waiting mode. I am in a study at the University of Utah where hematologist/MPD specialist Josef Prchal (yes, the spelling is correct) is the primary researcher. Consequently my BMB was sent to various universities, including the Mayo & MD Anderson, for pathologic confirmation. In many ways, it was a relief to have a firm diagnosis.

Since I am asymptomatic (except for the weight loss, slight splenemegaly and odd CBCs) I'm only getting a monthly blood draw, seeing the team of docs at the Univ 3x/year, and my local oncologist on an as-needed basis. I am not looking into finding a stem cell match at this time. 

My husband and I spent a solid 5 weeks, between initial diagnosis and confirmation from the specialists, learning all we could about MF. We were almost numb trying to learn the language of hematology so that we could research properly. We actually created our own glossary and quizzed each other. 

I've been lurking on this site (and others) since early August. This is my first posting. Best of luck absorbing all the new info ...

Karen 

Hi Karen....  or Garnetta,

Just read your message, my husband also has been diagnosed with MF, just enlarged spleen/liver, with his JAK2 negative, no further symptoms.  You're actually fortunate to be included in a study with people who actually know what they're looking for. We're in Rochester, NY, and there's little here right now.

First, the panic, then the study, and for someone like my husband who can't stand doctors, hospitals whatever, it's really hard.  As I told him, everyone hates these things and places, you're no different.

Like so many others, it's a waiting game. So far, he's working full time at 65 yrs, and in a few days I'll be 60 yrs, the thought of losing him to something so stupid really gets to me. I'm a fighter, but there's nothing to fight here.

Thankfully, no symptoms, his energy is remarkable, even more than before, and it's not an act. I'm the one with the symptoms! Probably emotional tiredness, but still coping well.

They wanted to give him hydroxyurea, just saying, it might help, but might not.  The side effects could have been terrible, since it's chemotherapy, and our doctor agreed that it could even trigger this to react.  So we decided just to wait. On the advice of people here, and with the agreement of our doctor, he's started Vitamin B12 to boost the cells, and we'll find out in a few weeks if it had the intended effect.  At least, it can't hurt.

There's no family donors available. Both his brothers are unfit, one has prostate cancer, the other also has bad health. Our only child, had thyroid cancer a few years ago, thankfully she's cancer free today. So that would leave us on the list.

I've read here that some people have gone on symptom free for 10-15 years, that's my hope and prayer for my husband.

My research has also come up with the City of Hope in California, that transplants on any age patient, regardless of health condition, even the really ill.  I'm keeping that as an alternative. 

When you said "numb", that was a perfect word.  Guess I'm still numb, this happened in September.  Please keep in touch here.  If you have any advice with medications, doctors, whatever, please let me know, as well as everyone here, we're all in the same place.... waiting.

Thanks for listening,  oops, I mean reading!