What's the name of your rare blood disorder?

Anne

What type of medical center are you dealing with. Our cancer doctor here specializes in blood problems and she also works with the Mayo Clinic. John Hopkins is also very good. Don't be afraid to ask for help as someone here might be just that right person. Good luck and feel free to email me direct.
Marie
Who just lost a husband to cancer, and major lung problems

Old Fixer, I'm so sorry to hear this news. Please share some further details so that we might be of help.

If you are not in an area of large research hospitals that are known for their abilities to aid in tough medical issues maybe it would be worth a trip to such a location and try some of the medical facilities. I know Houston has a wonderful medical community as do several others as mentioned.

Keep positive thoughts flowing if the negative takes over you will be defeated. Fight! Many of us are facing these kinds of situations.

Could you share the name of the 'disorder'? Must be something other than leukemia if it is not a cancer.

Regardless, the KT is a great place to get support "fer whatever ails you". Pull up a chair often for just plain venting or to continue to be your witty self -- whatever suits you.

It must be quite a shock to get this news -- and so FAST! After you get past the, "NO!" stage, what's next?

This is a great place to come to talk ... to vent ... or find support when one feels the need.

Come whenever it suits you, Old one needing Fixing.

ole joyful

Can't think of anything to say that hasn't already been said. So sorry to hear this news ((((OldFixer)))).

So sorry to hear about your bad news. I am always amazed that, whenever I find what seems to be an unsolvable dilemma.... a door here at the KT opens and often sheds some light on the situation. Keep in touch, stay positive, and share whatever you feel comfortable with sharing. Good Listeners sit at this table.

Sorry about your bad news concerning your health. Keep your chin up and know we are thinking of you.

It's hard to believe there isn't a group somewhere discussing the blood ailment you have. When you feel up to it, give us a name of the disease and I bet some computer savvy person here will find you a support group.

So sorry to hear this. I went through 10 years of being told that I had chronic leukemia and then had a miraculous return to normal blood chemistry. Hopefully that will happen (as it has happened to others) to you.

That really stinks, I can feel for you and you're between a rock and a hard place. I know the feeling of fight or cave in. Maybe we can help you find more info or some support for the nasty critter in your diagnosis. I'm more than happy to help . Faith and fun my friend, you can do this. Sending healing love from all of us.

Sorry to hear the bad news. I hope you can find some answers soon.

Sorry about your bad news.

Fight as hard as you can & never give up hope. Get on the computer & try to find a hospital that can help you.

Keep us informed as to what is going on, Good Luck. My prayers are with you.

I'm sorry about your health problems. Wishing you a speedy solution to finding info. Keeping you in my prayers. Please keep us posted on your search for answers.

Keeping you in my prayers

You are in my thoughts and prayers.

Just a thought, but have you got the correct spelling for this blood disorder? I bet there is information or others fighting this in forums out there for you. The other place you can get information is to go to the medical library of a teaching hospital. Unfortunately if you have no medical background, you almost need someone to help interpret what you are reading. Ask your doctor if she or he has any literature as well.

Wishing you well.

Thanks all, for your kind words and warm friendship, since I've only been here a short time, but managed to get into big trouble once. It was difficult to post my short adventure because it sounded like a "whine". But I wanted to turn to somebody, anybody. if it's proper, I'll try to expand on the situation right here, and answer some of your questions, rather than start a new topic.
This is not a cancer. The official medical term is Myleofibrosis, a degeneration of the bone marrow and the ability to produce good blood cells. No definate cause, no known cure, a rare disease. Where are the others that may have it? Abundant doses of Chemo have been linked as a cause, but, I don't fit that scene. Lukemia may lead to M-F, but no sign of that either. Conversely, M-F may lead to Lukemia. WTF?? Decreasing blood counts also cause other problems, previous symptoms now obvious.
Started locally, with a great Hemotology/Oncology Dr., no complaints there. Switched to the VA in Chicago, which has vast connections at its disposal. That's good. Including help for medication, if you qualify. There is only one prescription available, and the cost is $7K/mo. Agony. It's cheaper to die! If this weak info has given you a slightly better insight to the problem, your input is most welcome. Any way of avoiding falling into that hole is appreciated. Whew, this was less of a whine.

You may have already done this so forgive me if this isn't helpful - but I simply googled ............support groups for Myleofibrisis......
and several came up. I merely linked one below.

Here is a link that might be useful: Myelofibrosis awareness

You are in my thoughts and prayers; as others have said, the Kitchen Table is a place of friendship and support.

Here's another site with listings of support groups through the country as well as more information about Myelofibrosis. I hope this will be a helpful informational source to add to your data base.

Here is a link that might be useful: Support Groups

My friend's husband had something similar and ended up getting acute myelogenous leukemia.
He went to MD Anderson Cancer Center in Houston and got in a medical clinical trial. His leukemia went into remission.
He was scheduled for a stem cell transplant which would have cured his blood dyscrasia but unfortunately developed blood clots in his organs and passed away. He has a lot more time than the predicted four to six weeks.
It might be something you could look into and see if they have any programs that may help.
My thoughts and prayers are with you.
Keep us updated, please.

I did a quick read on this disease....I do have a bit of a medical background so I can understand some of the terminology. It looks like the medication you are talking about is Ruxolitinib. Are there any studies you can go on for this drug? Would it be free for you in this case? I am not from the States and am unfamiliar on how studies are run there. Is there funding you can get for this drug under compassionate use. Will the drug company donate you some doses? Is there a generic form of the drug you can get cheaper? I hope you can qualify for the medical funding you mention. Is stem cell transplant an option? Once you are over the shock of this diagnosis, write out a list of questions to ask the doctors. Take someone with you if you can to be a second pair of ears and advocate on your behalf. Even though I was a registered nurse, there were things that the doctors said that I missed due to stress. Doctors are used to having to repeat answers to questions. If you don't understand something, ask them to explain it in layman's terms if they can.

If you join some of the forums/ support groups you will find that these people are quite knowledgeable and a good support for you.

I have an inkling of what you must be feeling right now. When I was diagnosed with a rare cancer, they said my prognosis was about 6 months. That was 13 1/2 years ago and I am still here.

A friend of mine told me at the time, "Life is worth living as long as you can do something nice for another person everyday". It doesn't have to be much, writing an email, opening a door...just something. Her words of wisdom helped me fight depression as I looked to do things for others.

We are all keeping a chair at the KT available for you. Please check in often or we will get concerned.

from the one site already posted, clinical trials....while I can understand using the va system often they are so over burden, I'd take this list to to the dr there and see if they can't pull some strings....

Here is a link that might be useful: http://www.mpnresearchfoundation.org/Myelofibrosis-Clinical-Trials

OldFixer, so very sorry to hear of your diagnosis. Your story is so similar with what I went thru as a caregive for my Father. He was diagnosed with Multiple Myeloma back in 2004. Abnormal blood tests, then a BMB confirmed it. Ouch is right--I was there right with him.

I used to go to the Leukemia & Lymphoma Society website forums & post quiet frequently there. There are so many people who are dealing with blood cancers and so willing to share their stories, therapies, outcomes etc.. They also have a section where you can find support groups.

The first two therapies for my dad's MM didn't work for him. One of the medications my Dear Dad had to take (& was very expensive) was not covered by Medicare, but it was covered thru the V.A. I thank God they were able to help us with costs. Also, there are many drug companies that you can work with directly who may be able to give you assistance to get the medications you may need. You can talk to you Doctor about help with these programs.

And I just want you to know that the third therapy was showing signs he WAS going into remission. He was feeling better, gaining weight back & got to see his first great-granddaughter born.

And, just so you know, He passed away at age 83, but it wasn't his cancer that took him, but a massive heart attack. (He had heart disease for many year prior) So in my book--he beat the cancer.

I hope you will find some answers & hopefully some people on the message boards at the L&LS website. And I will keep you in my prayers, that you will find comfort, peace & hopefully remission & a cure.

Also, our dear KatWa has battled Lymphoma for many, many years & eventually had a Bone Marrow Transplant--and she's been doing great. She's an extraordinary & inspiration to all of us who know her (from her posting here at the KT) It was never easy for her, but she never gave up. She always found humor in some of the most dire times. I see that she occasionally post on the KT Facebook & I hope if she see this, she'll send you some hope & cheer as well.

God Bless
~~ katclaws

Here is a link that might be useful: Leukemia & Lymphoma Society

I'm not any knowledgeable help, but I certainly can send prayers for you, OF! You have all or our support, and I hope you have other(s) near you, as well.

Sorry you are going through this. All I can offer are my prayers.

So many have posted excellent information to you , what a blessing. As one who has had two bouts of cancer and been a caregiver to family members, just want to say it is very important to take someone with you to Dr. visits. It is so easy in times of stress to not absorb everything that is being said. Sometimes we block things out without even realizing it. My prayers for you, and hang on in there !

Below is a forum where you can join in and find answers

Here is a link that might be useful: forum

My husband and I are praying for you and there is power in prayer.

No advice, but prayers for a complete healing.

Shirley

Did you check out the NIH? I typed in the disorder name and quite a few references came up. (Sorry if I'm repeating what someone else said.)

Being informed is so important. It will help you fight. Best wishes.

Here is a link that might be useful: NIH

Hi again, and thanks for all the tips. Been chasing around since 4am trying to find a direction. Info is limited, sometimes duplicated, and talk is scarce, some quite old.

Here's one of the findings: "MF can occur on its own, called "primary myelofibrosis," or as a progression of other bone marrow diseases. Other myeloproliferative neoplasms that can progress to\ myelofibrosis include polycythemia vera (PV) and essentialthrombocythemia (ET). Between 10 and 15 percent of MF cases begin as either polycythemia vera or essential thrombocythemia. Myelofibrosis is also known by several other names, including agnogenic myeloid metaplasia, chronic idiopathic myelofibrosis, myelosclerosis with myeloid metaplasia and idiopathic myelofibrosis. It is considered as a "form of blood cancer"."

It will take some medical courses to figure all this out. No wonder I can't ask any intelligent questions. But the hunt will continue. Would like to post something good! Also have a distraction ....... more snow piled up overnite, and it's still snowing. Have delayed going out to remove it. Tomorrow will bring the -50 winds, and I have to try to get to an early AM treatment. Grrrrr, dumb winter. Forgot how we used to enjoy sledding in this kind of weather.

Lots of good comments above. I'm sorry you have to deal with this, OldFixer, but I'm glad you posted. If I'm recalling the same incident you mentioned, the "big trouble" you got into at the KT was very limited, to say the least. You'll find lots of knowledgeable and sympathetic people here more than ready to help you. Wishing you the best outcome for this new year.

Good luck, OldFixer! I wish you the best.

My aunt was a working doctor her entire career (until she passed on about 5 yrs ago). She always told our family that if we were ever diagnosed with something unusual, to get ourselves to a teaching hospital/facility for treatment. It was her belief that teaching facilities will be most up to date or have the easiest ability to get up to date very quickly.

As a cardiac patient with a weird ailment, I follow her advice and am a Mayo patient. I encourage you to consider this advice as well. Already it seems as though you might be a good student:)

Wishing you all the best..hope you can get the answers and treatment you need.

Take care, and keep everyone posted.

I am so sorry you are dealing with this. Sending prayers your way.

jmc01 gave you some excellent advice regarding teaching hospitals. I was diagnosed with a rare brain tumor and thankfully my primary care felt the same way as jmc01's aunt and I was sent to Stanford. I wouldn't be here today if I had gone to a "regular" hospital.

Bad news is bad news any time of year, to start the year off this way is sad.

I have no helpful info or advice, just wanted to let you know my thoughts are with you.

I, too, just wanted to let you know my thoughts are with you.
I would also suggest looking at the website for NORD National Organization of Rare Disorders

Here is a link that might be useful: NORD

(((( Old Fixer ))) you are in my prayers.

Old fixer, I have heard of myelofibrosis as my brother suffered from the disease. He did pass away but lived almost 10 years after diagnosis. He did go to Mayo but I think he waited too long to get there. A bone marrow transplant might have helped him but there were no matches. Please do as others have suggested and go to a teaching hospital or Mayo. My thoughts are with you. Please do not just accept this diagnosis without seeking every possible treatment. Satine