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Myelofibrosis

jubilee
Posts: 1
Joined: Jun 2002

I was diagnosed at 32 in 2002,and have had a splenectomy and I am currently in remission.is there anyone else out there that has this rare bone marrow disease? its also has other names one being Agnogenic Myeloid Metaplasia ,another is Idiopathic Myelofibrosis or Primary Myelofibrosis...I would like to meet other with this....

Shery
Posts: 1
Joined: Jul 2004

My fiance was diagnose with Myelofribrosis in 1995. He is currently blood monitoring. (platelet are plentiful! Hemoglobin is falling...currently 93) He will have a BMT (brother is the donor, most thankful for the match) when the Dr. decides it is time. His spleen is still intact and they will take it out in prep for BMT or before if it gets bigger. So far, his counts seem to be falling at a steady pace, but we pray every day for advancement in BMT's. They say the minute his hgb hits 80 (I question that, apparently if you require tranfusions, it weakens the immune system) he will be set up for the transplant. Brad is 48 in a few weeks. He works (an electrician so long days) and only seems to be mildly tired. As he puts it, "I only take one stair at a time instead of 2". Brad doesn't much like to discuss his MF, however if you have any questions that I can help you with, or even as outside support, I would be happy to.
Shery

faithhusain
Posts: 1
Joined: Apr 2010

I am a 36 yr old just told yesterday about the diagnosis. I had gone for routine physical when my doctor found high platelet counts.I subsequently had Bone marrow biopsy which confirmed Primary Idiopathic myelofibrosis. I am at a loss- My hemato-oncologist had no answers for me. I am still completely asymptomatic.I am unsure about my options and survival.The uncertanity is killing me, Did your fiance start of as completely asymptomatic?.Where would you be getting the transfusion done? How are you all coping?. I have a 7 yr old. I hope I live long to see him grow.

faithhusain

ladyhicks919
Posts: 1
Joined: Apr 2011

Hi i am 35 I was diagnosed last year! I found out after having my third child! She was born with a heart defect! She ended up having a heart transplant and spent ten months in the hospital. Anyway she is home now and i really need to focus in to see what i can do about this disease. I have a large spleen now my blood count has been up and down but has not gotten to the point of needing a transfusion. I am wondering how are you doing since you were diagnosed?

Mrs.kashif
Posts: 1
Joined: Feb 2013

my husband is also suffering from myelofibrosis n daignosed in nov 2012 n he is 37 yr old n i m getting tense day by day ............i really dnt knw that what happened with us to next morning? mean i really dnt understand that either it ll be manageble or not? plz tell me he has slightly hepatospleenomegaly which is not to be seen in general check ups.........just only found in ultrasound and his hemoglobin level is too low now dr prescibed him eprex injection which is not so working in second month ..........tell me about initial situation which happened with u ppl plz let me inform i wanna guide from u......  

thnx

Beloved49's picture
Beloved49
Posts: 1
Joined: Nov 2004

Hi, I am Beloved49. I was just diagnosed with Myelofibrosis last Friday. They do not know how long I have. I am 56 years old. What awaits me? I do not know what to do.

lauradeon
Posts: 1
Joined: Feb 2005

Hi! I was diagnosed with Myelofibrosis in 2000. I wasn't able to get a bone marrow transplant because I wasn't able to find any matches. I have a very rare antigen. I had platelets over a million. The doctor said I had Essential Thrombocythemia (ET). I then had a bone marrow biopsy and he said I had myelofibrosis. The doctor put me on Hydrea. I am currently on Anagrlide (Agrylin). I have been having problems keeping my platelets down. I am currently taking 6 pills of Agrylin a day. Each pill is 0.5 mg. My white and red are fine now, usually at the top level. I will be 41 this year. I guess everyone is different. This is the first time I have been on any support site. I would be happy to talk to anyone with this disease. Thanks!

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to consider contacting others you have read about on this discussion board through the internal CSN email system. To learn more about this feature, click on the help button which is located at the top, bottom and on the left hand side of your screen.

Take care and be well,

Dana
CSN Dana

MESizelove
Posts: 5
Joined: Nov 2005

I too was diagosed with Mylefibrosis in 2000 and have enjoyed 4 years of "stable" blood counts until early this fall when the counts seemed to take a nosedive. Up to now we have been in "watch and wait" mode. I will be having another bone marrow biopsy in Dec and we will see where we go from there. Yes, it seems that everyone has a slightly different pattern. I am 61 and worked full time (State Employee) for three years after diagnosis. I am VERY happy to be retired for a year now.

DNeal
Posts: 1
Joined: Sep 2012

I was diagnosed in May. I'm trying to come to grips with whether to get a Stem Cell transplant or wait until my condition worsens which is one opinion. Can I ask why you didn't pursue a transplant ?

cajungirl
Posts: 1
Joined: Jun 2008

Hi!! My husband was diagnosed with Myelofibrosis 2 yrs. ago. He is 48 yrs. old. How are you doing? Any improvement? Do you have any symptoms? I know that you are looking for someone to talk with that has this disease but I would love to talk with someone that just knows what I am talking about. Thanks!!! :>)

suesue555
Posts: 25
Joined: Dec 2008

Cajungirl: How is your husband? I love to talk to you if you can read this email.
My e mail address: suesue555@hotmail.com
Take care!
sue

attoni
Posts: 2
Joined: Jun 2009

HOW IS YOUR HUSBAND DOING? I ALSO HAVE MYELOFIBROSIS AND I AM 56. IT IS SCARY. MY COUNT WAS DOWN THIS WEEK TO 8.7. MY DR IS VERY CONCERNED AS SHE SAID IF IT GOES BELOW 8, I NEED TO EITHER TAKE PILLS, WHICH IS THE FIRST OPTION TO TRY TO BUILD UP RED COUNT OR IT IT DOESN'T WORK, THEN TRANSFUSIONS. SHE WANTS MY BROTHERS CHECKED FOR POSSIBLE BONE MARROW DONERS. DID YOU HUSBAND GO TO A SPECIALISTS, LIKE SLOAN OR CORNELL? I WENT TO SLOAN IN NY FOR A 2ND OPINION AND RESULTS WERE THE SAME AS MY DR IN NJ. I FELL HEALTHY OTHERWISE EXCEPT FOR BEING TIRED LATELY. IT JUST SEEMS LIKE SOMETHING THAT IS UNREALISTIC AT THIS POINT.

suesue555
Posts: 25
Joined: Dec 2008

Hello,
My name is Sue and I have been diagosed with Myelosfibrosis since August 2008. I also can not find any matches for bone marrow transplant. I have also have high blood platelets over 1.2 million. I have been takinng the same medicine as you for 18 years. The doctor had infromed me that by the age of 65 years of age all my bone marrow with deterioted. I also tranformed from ET to Myelosfibrosis I am currently 59 years now. For 2 months I have been taking Canadian and chinese herbs for 2 months. In the middle of January I will know if the herbs have been helping. Feel free to contact me at suesue555@hotmail.com I am looking forward from hearing from you.

JossieJo
Posts: 2
Joined: Mar 2010

Hello Sue
I have been diagnosed with Mylefibrosis since June 2009, I am 61 years old, so bone marrow transplant is out of the question.
I am taking thalidomide, prednisone and an injection of Aranesp every three week and my hemoglobin, platelets are under control at this point.
Please let me know about the chinese herbs.
Hope you are doing better.

david71
Posts: 1
Joined: Dec 2012

My name is David, and my father was just diagnosed with Mylefibrosis today. He is 70 years old and I was wondering how the medicines you were taking have treated you. If they are still working to keep your blood under control or have you had to change the regiment of drugs and how that was working for you. Thanks for your time

dgenton
Posts: 1
Joined: Jan 2013

Hello, I was diagnosed August 2011 with same thing except my platelets were about 900. I was on Hydrea for over a year which did lower the platelets but did not reduce the spleen size. In October they changed me to new drug - Jakafi 20mg. It has done wonders in three months. Spleen has been reduced and platelets are normal. WBC and RBC are still a little below normal but are improving each month. Good Luck to you.

MESizelove
Posts: 5
Joined: Nov 2005

I hope you have had contact with others with myelofibrosis since your posting on 11-27-2004! I was diagnosed August 2000 and have enjoyed "stable" blood counts until this fall. I'm scheduled for another bone marrow biopsy in December and we will see where we go from here.

MESizelove
Posts: 5
Joined: Nov 2005

There is a lot of information available about median longevity from diagnosis - but if it is published it is probably out of date. What you can expect depends on what symptoms you have now. The norm is for fluctuating blood counts with a generally downward trend. I was 57 when I was diagnosed August 2001 and have enjoyed 4 years of "stable" counts - HGB around 11 or 11.5 - until this fall. Sept was 9.9 and Nov was 9.2. I'm going back for another bone marrow biopsy and CT scan on Dec 15th. Did you have a bone marrow biopsy and Ct Scan? When will you see your hematologist/oncologist again? As for what to do: learn all you can about myelofibrosis; find a support group (I attend a general cancer group as well as a Leukemia, Lymphoma group); and plan some fun happenings. When I was diagnosed we updated our wills, drew up legal and medical power of attorney and updated our living wills. We are prepared for anything - but will never be ready. And we are now planning the vacation of my dreams for next summer.

MESizelove
Posts: 5
Joined: Nov 2005

I'm interested in your statement regarding remission. Since I was diagnosed Aug 2001 I have done extensive research and have read nothing about possible remission. Please tell me more.

suesue555
Posts: 25
Joined: Dec 2008

MeSizelove/any one

I hope you still can read this message, I need to know any one have Myelofibrosis
over five years to talk to me. Is there any hope ?

stavan
Posts: 4
Joined: Aug 2009

Hi, i was just diagnosed 2 days ago. I am 32 years old. very scared. i have 3 children. Did anyone respond to you about having myelofibrosis for over 5 years. In every thing i read that's what i see but it seems like very few people live longer i guess it depends on the person. How are you doing now?

Still Here
Posts: 2
Joined: Aug 2009

Hi, Just wanted to give you hope, I was diagnosed in 1999 at the age of 45. Was told that I only survive 5 years, I am still here & just started to see changes in my blood work. I have a large spleen & the white count is in the 50,000 but other then that, I work & do everything that my body lets me do. If I never gone to the doctor 10 years ago. I would not think there is anything wrong with me... My red & platelet count is normal. Hope this gives you "faith"..

stavan
Posts: 4
Joined: Aug 2009

Thank you, this makes me feel a lot better. I'm just praying it goes as well for me. Are you taking any medication? I am not right now but my platelet is high and hemoglobin 10, other than that i feel fine. Please keep in touch let me know how you are doing. Again, Thank you for responding.

bethevans
Posts: 3
Joined: Sep 2009

Hi Stavan,
I am sorry for your recent diagnosis, I am sure it was frightening for you to find out you have this disease. I remember when my sister was diagnosed over 16 yrs ago, yep, 16 years. I thought she would be gone within 5 yrs. She has been stable for this whole time, worked fulltime and has felt pretty normal. NOTHING has stopped her from doing things that she enjoys. She is occassionally tired but she paces herself.
She doesn't like to talk about her disease so I can't get much information out of her. She is stubborn that way.
Have faith, keep in touch with others, get information, get to know your body and your limits. Be aware of your labwork, keep records, ask questions, plan ahead, get family to get tested to see if they are a match in case you need a bone marrow transplant. My family got tested, I am unfortunately a match but my older sister is IN CASE my younger sister needs one. NOT YET though, she is stable for now. So hang in there Stavan, there are thousands of people with this who live a long productive life. Enjoy life,Good luck to you, Beth

stavan
Posts: 4
Joined: Aug 2009

Thanks its always comforting to hear some good news. How old is your sister? My doctor said it just depends so i'm going to try and stay positive and trust God to do the rest.

bethevans
Posts: 3
Joined: Sep 2009

HI Stavan, my sister is 52yrs. old. One other thing I forgot to tell you was, please share this with family and friends. You absolutely need the emotional support through this ordeal. It is not easy going through this by yourself. Have someone go with you to the Dr. and for bone marrow biopsies. It's always so helpful to have a special family or friend there with you. Not only will they be a support for you but they can be an extra set of ears for information the Dr. is giving you., there is a lot of new confusing information to absorb. You don't have to be alone with this. Beth

Still Here
Posts: 2
Joined: Aug 2009

Hi Stavan,
I am still not taking medications. I go to the doctor every 3 months but as of Tuesday, I am going to a new dr. because mine has left the state. I will see what they have in store for me. My hemoglobin has been OK tho the red count is down in the low normal, I started taking vitamins with iron. It is just the white count & enlarge spleen that is the problem. There is a good website about the disease from mayo clinic. My doctor told me years ago not to believe everything you read on the internet but is hard to stay off when there is no one to talk to.. Keep in touch. I will let you know what the new Doctor says. Where do you live?

suesue555
Posts: 25
Joined: Dec 2008

Still Here and Stavan:
If you go to the Discussion Boards, Long term effective, Myelofibrosis
there are few people post their comment and new medicine.........
I am so glad Still here is still here, that is what I like to know too,
My chinese herbal medicine cancer specialist has been given me chinese medicine
that will help my spleen keeps normal, so far, I have not have found any doctor treated
Myeloffibrosis yet, my blood specialist is only given me the same medicine for
my high blood planate, which I have been taking for last 19 years.............
Regards
suesue

bethevans
Posts: 3
Joined: Sep 2009

Hi Sue Sue,
I am glad you are doing so well. What is the name of the medicine that you have been on for 19yrs? and what is the name of the chinese herb? Does it shrink the spleen? Have you had side effects with the meds?
Thank you for sharing your story, it really helps others so much, Continued good health, Beth

Dalt
Posts: 3
Joined: May 2011

I posted a while back how I turned around my myelofibrosis within a very short period using natural remedies and I have been asymptomatic for approx 1.5 years. I might add that I was so sick in late 2009, my oncologist only gave me a short time to live.

Those MF sufferers will find hope with the following extract that medical research in 2002 (yes, nine years ago) it was discovered that vitamin c will supress the Jak 2 inhibitor gene that is suspected of triggering myelofibrosis.

I might add that major cancer institutes are rushing to find a supressor for the JAK 2 gene. Why, when it is readily available now.

Read the extract and for those who want the full medical article to give to your oncologists, let me know and I will forward this to you - "HEMATOPOIESIS
Vitamin C inhibits granulocyte macrophage–colony-stimulating factor–induced signaling pathways Juan M. Ca´rcamo, Oriana Bo´rquez-Ojeda, and David W. Golde Vitamin C is present in the cytosol as ascorbic acid, functioning primarily as a cofactor for enzymatic reactions and as an antioxidant to scavenge free radicals.

Human granulocyte macrophage–colonystimulating factor (GM-CSF) induces an increase in reactive oxygen species (ROS) and uses ROS for some signaling functions.
We therefore investigated the effect of vitamin C on GM-CSF–mediated responses.
Loading U937 cells with vitamin C decreased intracellular levels of ROS and inhibited the production of ROS induced by GM-CSF. Vitamin C suppressed
GM-CSF–dependent phosphorylation of the signal transducer and activator of transcription 5 (Stat-5) and mitogenactivated protein (MAP) kinase (Erk1 and Erk2) in a dose-dependent manner as was phosphorylation of MAP kinase induced by both interleukin 3 (IL-3) and GM-CSF in HL-60 cells. In 293T cells transfected with alpha and beta GM-CSF receptor subunits (GMR and GMR), GM-CSF–induced phosphorylation of GMR and Jak-2 activation was suppressed by vitamin C loading. GM-CSF–mediated transcriptional activation of a luciferase reporter
construct containing STAT-binding sites was also inhibited by vitamin C.
These results substantiate the importance of ROS in GM-CSF signaling and indicate a role for vitamin C in downmodulating GM-CSF signaling responses. Our findings point to vitamin C as a regulator of cytokine redox-signal transduction in host defense cells and a possible role in controlling inflammatory responses.

(Blood. 2002;99:3205-3212)
© 2002 by The American Society of Hematology

It has also been reported that medical research has found that 'Emodin' an active component of traditional chinese/japanese medicine - from the root and rhizome of Rheum Palmatum (chinese rhubarb) will supress the JAK 2 inhibitor gene. Note: The common Rhubarb found in the western world is an entirely different plant.

For the full medical paper in pdf form, I can be contacted via richard@ecobites.com - Reference Dalt/JAK 2 inhibitor gene.

teach45
Posts: 3
Joined: Feb 2012

Hi Dalt, I have recently been diagnosed with primary myelofibrotosis in Jan/2012 after a routine physical. Referred to hemotologist/oncologist at our Cancer Clinic. I have more "nuisance syptoms"(itching after shower, RBC Low normal, WBC normal, slight weight loss,fatigue for approx 4-5 wks(due to low iron), slight increase in spleen size)I feel great last 3 mo (high enery, weight gain back to normal, increased appetite. At this point my H/O wants to monitor progress with monthly blood work.
He mentioned that I can probably qualify for a JAK2 inhibitor clinical trial that is under way in Canada but since I have few really serious symptoms I have to make a decision.
I am very interested in your post about vitamin C and Emodin as it is the ONELY ref I have found on the internet re the effects on PMF.
Are you still on the regime? still "holding PMF at bay"? I will email you for the full medical paper.
Thanks

teach45
Posts: 3
Joined: Feb 2012

Hi Dalt, I have recently been diagnosed with primary myelofibrotosis in Jan/2012 after a routine physical. Referred to hemotologist/oncologist at our Cancer Clinic. I have more "nuisance syptoms"(itching after shower, RBC Low normal, WBC normal, slight weight loss,fatigue for approx 4-5 wks(due to low iron), slight increase in spleen size)I feel great last 3 mo (high enery, weight gain back to normal, increased appetite. At this point my H/O wants to monitor progress with monthly blood work.
He mentioned that I can probably qualify for a JAK2 inhibitor clinical trial that is under way in Canada but since I have few really serious symptoms I have to make a decision.
I am very interested in your post about vitamin C and Emodin as it is the ONELY ref I have found on the internet re the effects on PMF.
Are you still on the regime? still "holding PMF at bay"? I will email you for the full medical paper.
Thanks

teach45
Posts: 3
Joined: Feb 2012

Hi Dalt, I have recently been diagnosed with primary myelofibrotosis in Jan/2012 after a routine physical. Referred to hemotologist/oncologist at our Cancer Clinic. I have more "nuisance syptoms"(itching after shower, RBC Low normal, WBC normal, slight weight loss,fatigue for approx 4-5 wks(due to low iron), slight increase in spleen size)I feel great last 3 mo (high enery, weight gain back to normal, increased appetite. At this point my H/O wants to monitor progress with monthly blood work.
He mentioned that I can probably qualify for a JAK2 inhibitor clinical trial that is under way in Canada but since I have few really serious symptoms I have to make a decision.
I am very interested in your post about vitamin C and Emodin as it is the ONELY ref I have found on the internet re the effects on PMF.
Are you still on the regime? still "holding PMF at bay"? I will email you for the full medical paper.
Thanks

Archie
Posts: 1
Joined: Dec 2012

My story is somewhat the same as the above story except I have been on Jakafi tablets for about six months. I was diagnosed with MF in april of 2012.
Symptoms was reduced Hemo, kidney disease, gout, enlarged Spleen,increased Platelets, weight gain and skin irritation. The Spleen has reduced slightly after six months of Jakafi. At the time of initiating the Jakafi, I was told that my Hemo might further lower, which it has. I am now taking blood transfusions about every 40 days and on one occasion I spent some time in the hospital as my Hemo dropped unexpectedly to 7.0 I am scheduled to come off of Jakafi in two weeks as there is no positive results other than spleen reduction.
I am interested in all the information about vitamin C therepy I have been reading about.
I would like to hear from those that are using Vit C. I am 75 yrs old and need all the information I can gather.
Thanks

auntbe
Posts: 3
Joined: Dec 2012

I would suggest you check with the Mayo Clinic in Rochester Minn  for trials and new treatments. I was there in January  2013 and given great hope with an extensive evaluation and treatment options. I say Dr. Al-Kali and Dr. Teffric. Some options listed were thalodomind, lenalidomide and inteferon. After the evaluation I was given a clear explanation about which treatment was best for me. I felt better knowing the doctors were knoowledgeable about Mylefibrosis and had been studying it for so long. They are willing to work with your doctors at home. I am 56 and was diasnosed in November 2013 after 30 years of thrombocytosis. Best wihes to eveyone

auntbe
Posts: 3
Joined: Dec 2012

I would suggest you check with the Mayo Clinic in Rochester Minn  for trials and new treatments. I was there in January  2013 and given great hope with an extensive evaluation and treatment options. I say Dr. Al-Kali and Dr. Teffric. Some options listed were thalodomind, lenalidomide and inteferon. After the evaluation I was given a clear explanation about which treatment was best for me. I felt better knowing the doctors were knoowledgeable about Mylefibrosis and had been studying it for so long. They are willing to work with your doctors at home. I am 56 and was diasnosed in November 2013 after 30 years of thrombocytosis. Best wihes to eveyone

Annie R.
Posts: 2
Joined: Aug 2011

Hi, it's a relief to have just found this site. So much seems to be happening at once. My husband was diagnosed with MF in 2004, no symptoms, JAK neg, just enlarged spleen and liver. Everything was relatively fine, but we were upset that there was no help until symptoms start to show.

That's where we are now.

Past few months, his blood tests are showing declining hemoglobin, and also what they call, cell blasts, which are currently at 3, last month they were 2. We were told when it hits at 30%, it will become something much more serious, leukemia.

Also told that transplant is very dangerous, just as last ditch efforts, and there's no match for him within the family.

Our specialist in Rochester, New York wants us to go to Mayo Clinic where there are clinical trials going on, the earliest appointment was for September 27th, so off we go.

They refused to answer any questions however over the phone (or email), just show up, where the specialist will speak to us for one hour, and then decide what to do.

Minnesota is far from us, especially when the seasons change and snows come, so it's plane only.

Anyway, we're scared. He's very tired, and has many naps during the day, however, he's still working around the house, a huge deal. Planting, gardening, mowing, taking great care of the house and also, me.

Does anyone have any advice or experiences with the Mayo Clinic, and with this stage of MF? Anything you have to say would be helpful, and you know I mean anything!

We just don't want this to continue to decline, especially with those blast cells, that's the scary part.

Oh yes, forget to mention, he's lost and still losing weight, although he eats every 2 hours, and eats a lot. He started at 256, now down to 193. He's started to feel a little bony, although his tummy is large because of the spleen size (double what it should be).

Ph yes, forgot to mention, my husband is 69 yrs.

Please help with any advice, experiences you may have. Thanks so much.

Janice C
Posts: 1
Joined: Dec 2011

Hi Annie,
I was wondering if you found any help for your husband at mayo. My father was diagnosed with MF about 2 years ago. He is 77 and has been going downhill fast in the last 6 months. His red and white blood counts are low as well as his platelets. His is now getting a blood and platelet transfusion every week. He has lost a lot of weight and is getting really bonney.
I am looking for a miracle. Any info would be greatly appreciated.
Thank you
Janice

stavan
Posts: 4
Joined: Aug 2009

I am so sorry it took me so long to get back to you. I live in Georgia. I have an appointment next week at the Mayo Clnic. How did everything go with your new doctor? Ill let you know how my appointment go next week. Ive been trying to keep my mind busy. I know how it is not to have anyone to talk to. My husband wants me not to worry. The world can be coming from under his feet nothing moves him but i am the opposite. Where do you live? I

suesue555
Posts: 25
Joined: Dec 2008

Beth: The medicine I am taking now is called Anagrelide and the chinese med. I do not know
what they call in English. I do not know is there any side effect or not ? I am doing o.k.
Regards
sue

supermans pal
Posts: 1
Joined: Nov 2009

Hi
I just joined today. I started with essential thrombocythemia (too many platelets), diagnosed in 2005. Treated with Anagrelide until March '08, but was losing confidence in my doctor. Switched to an oncologist/hematologist at NYU. He seems very good. He did a BM biopsy, and confirmed myelofibrosis. I am 55, and have been told that a bone marrow transplant is not feasible--25%chance of survival.

We weaned me off of Anagrelide, and began treatment with interferon alpha injections. Very rough start, but after 8 months it is getting more tolerable. Lots of side effects, if anyone is interested or is also treating with interferon, I would like to share info.

best to all

sudhir2884
Posts: 3
Joined: Aug 2012

Hi Supermans i m taking Interfaron 2 alpha 3 miu from this month. Can you please tell how effective are these. will they help in reduction of spleen size and in MF ? How much side effects they have ?

Thnx..

justbychance
Posts: 8
Joined: Nov 2009

I was diagnose with myelofibrosis in April of this year 2009. I had to have blood transfusions and a splenectomy. My spleen was over 5lbs, they took a liver and lymph node biopsy and the myelofibrosis has spread to those organs also, they tried a low dosage chemo pill called revlimid and I have so many different allergies to medicines that I couldn’t take it. I got a reaction of dinner plate hives from it. I was taken off of it for 30 days and now they are going to try a low dose of hydroxyurea and see how I get alone with that. They had to remove my spleen because I was having very high fevers, losing a lot of weight, mouth sores, red blood count and platelets very low, but white count high and other different things. When they were removing it they found it had attached itself to my diaphragm for more blood supply, which was help causing me to get anemia and breathing problems which I didn’t realize at the time. Three years ago I was diagnose with breast cancer had an lumpectomy and radiation, then they found I had a factor V deficiency which cause me to have a deep vein blood clot in my leg and is being treated with warfarin, then 2 years later start having female bleeding which they done a d&c and a procedure called nova sure which none helped which was sure it would,, but they think now the warfarin and the myelofibrosis combined is not helping my problem with that it could be causing it. The symptoms that I was having with the spleen was coming and going over a year before diagnose because they was looking for something with the breast cancer. My white blood count and platelets is high right now. The revlimid was helping the platelets but the Eos was extremely high because of the reaction and the white count was getting higher. I was 48 when diagnose with myelofibrosis. Just wondering has anyone experience any symptoms like this and had to get there spleen removed and is close to my age. Please let us know. Does anyone know if there is a certain age for bone marrow transplant (someone told me some places doesn’t like to do them after age 40) and can you receive one with out a spleen.

lahicks
Posts: 1
Joined: Apr 2010

I was recently diagnosed i am 34 with 3 kids my spleen in enlarged and so is my liver. I really do not know much about this disease could anyone give some advice of things to look for our ask about in my doctors appointment?

abbyspal
Posts: 1
Joined: Jul 2010

Dear lahicks:

You may have already found the information you requested. But just in case, perhaps this website might be helpful:

http://www.mayoclinic.com/health/myelofibrosis/DS00886

Hope for all
Posts: 2
Joined: Dec 2009

My mother had myelofibrosis and MDS at the same time, she was 64 and had a de novo form of MF and MDS...meaning, a secondary type of Myleofibrosis/MDS since they were caused by Chemotherapy and Radiation, a rare side effect if you will. This meant that she wouldn't get the same or lasting benefits from treatments or transfusions,plus her age and of course there was the fact that she had two types of Myelodysplastic disorders. So I wanted to make sure I was clear about the range of extreme difficulty in treating her before I said anything else.

She eventually had to find a second oncologist that had experience with Myelofibrosis and when she did that, he helped her qualify for a stem cell transplant- even at her age and with the other factors that seemed to be stacked against her. Her brother was a match to be a donor and I think that is why she was approved. Of course this was considered to be a clinical trial, as all stem cell transplants may still be...but I just wanted to let those who are diagnosed a little later in life know that a transplant isn't always entirely out of the question because of age. If you do not have a Specialist that can help you do that, then it never hurts to get a second opinion. Especially if you have a sibling...and even better: a sibling donor that is the opposite sex from the patient.

This condition can be described as a series of ups and downs. Time can go by with no incident and sometimes there can be sudden changes. There is no rhyme or reason to progression, it's difficult to "stage" and I have seen first hand at how frustrating this is, when my mom wanted more than "watch and wait".

I hope I am not out of line for posting this, since I don't have a total success story to share,but this rare diagnosis made an impact on my family and I hope for the best, for anyone experiencing this. I was a care giver for a long time and I never found another family caregiver for this particular illness on a message board, so thats another reason why I wanted to come back to this site. Also, everyone was wrong about estimating a window of "time" for her and "medium ranges" on the web were not even close. Probably out of date and based on a time when the only treatment options were transfusions.

GolferNan
Posts: 12
Joined: Aug 2010

Hi lahicks,
Sorry to hear of your recent dx of MF. I am 65 and was diagnosed with MF in Oct. 2005. Most of the research I have done gives a prognosis of 5-15 years survival rate with a median range of 5 years. I have seen a lot of survivors (on message boards and support sites) living beyond this range so there is always hope that you will be one of the lucky ones. I am into my 5th year and have just recently begun to develop symptoms. I've had an enlarged spleen for a couple of years with no issues, but now it has begun to hurt so don't know if it is bigger or not. I have begun to have a lot of bone pain mostly in my legs, knees and hip/pelvic area. This is due to the scaring of my bone marrow which is an end result of the disease. I've been on pain meds but now need more. My hematologist has started me on Hydroxeurea to see if that will ease the pain and reduce my spleen size. The only blood counts that were always off in me (other than hgb-Anemia) is my RBC. It is low. There is a lot of information about the disease on the internet. You should do some research and maybe you will find a few answers there. It is a rare disease and affects everyone differently, so it is unpredictable. Not much in the way of treatment either. You are young so a bone marrow transplant may be your best bet. That is the only thing that will cure it. Hope you can find a match, maybe someone in your family. Be sure to ask your doctor if that would be an option for you. I am too old and it is too risky for me to consider a transplant. I am here if you want to ask me any other questions. I've been looking for someone else with this disease....we all need support and understanding. Let me know if I can help in any way. Good luck and may God bless you with peace and strength to get you through this valley. I will keep you and your family in my prayers.

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