Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
Suggest Treatmet For Myelofibrosis
Question: My husband has been dealing with myleofibrosis for several years now. When he had a bone scan a few years ago, he had 83% of his bone marrow thickning and solidifying. We went to the Mayo Clinic for that diagnosis, and since have been doctoring here in our small town clinic with an onocologist who comes in from Ft. XXXXXXX Indiana.
Lately he has become extremely tired, and having trouble sleeping. He sees the onocologist again in three weeks, but I have been very concerned about his sudden change. They told us it would be a slow progressing disease ("one that he could live with for years with no problems") but just in the last four weeks he has gotten progressively worse. I am in such distress......and I am looking of some additional ideas and advice on making him feel better.
At this point they aren't giving him ANY medication for it......but his spleen is very enlargted (and has been for some time) so he doesn't eat much because it makes him feel full. So......not only is his strength ebbing, but he has lost about five pounds in the last two months.
The doctor has told him that there is a study with a pill with people with a JAK type of the disease, but he doesn't have that in him. I was just praying for something new or experimental that I could ask the doctor about when we see him.......I am desparate to find something to help him. It just seems so sensless for NOTHING to be done for it.....his counts have lowered a little, but the doctor said that it is still "stable". Well.....he doesn't seem stable to me anymore, so I guess I am looking for some good news and new news about something that could help him.
I feel so helpless and out of control. Could you please help me with your opinion?? Please????
Lately he has become extremely tired, and having trouble sleeping. He sees the onocologist again in three weeks, but I have been very concerned about his sudden change. They told us it would be a slow progressing disease ("one that he could live with for years with no problems") but just in the last four weeks he has gotten progressively worse. I am in such distress......and I am looking of some additional ideas and advice on making him feel better.
At this point they aren't giving him ANY medication for it......but his spleen is very enlargted (and has been for some time) so he doesn't eat much because it makes him feel full. So......not only is his strength ebbing, but he has lost about five pounds in the last two months.
The doctor has told him that there is a study with a pill with people with a JAK type of the disease, but he doesn't have that in him. I was just praying for something new or experimental that I could ask the doctor about when we see him.......I am desparate to find something to help him. It just seems so sensless for NOTHING to be done for it.....his counts have lowered a little, but the doctor said that it is still "stable". Well.....he doesn't seem stable to me anymore, so I guess I am looking for some good news and new news about something that could help him.
I feel so helpless and out of control. Could you please help me with your opinion?? Please????
Brief Answer:
Considerations
Detailed Answer:
hello and thank you for sending the question.
I can appreciate that you are dealing with a very stressful situation. Myelofibrosis is a disorder which can become very disabling. At the same time it is very difficult to predict how rapidly the course of the disease will accelerate.
each and every patient is unique regarding how this disease will manifest. Regarding the mutation you described JAK2. there is a medication which has been approved by the FDA for treatment of patients who have this mutation. Interestingly the drug is also been shown to be somewhat effective in patients who do not have the mutation.
I think it would be reasonable to discuss a trial of this medication with the hematologist. Of course every decision should be made with the patient making the major decisions based on the information provided by the physicians. This includes potential side effects of medications as well.
if the spleen becomes very large some physicians have considered radiation to shrink the large spleen. This again is something you have to discuss with your doctor in detail.
Again I appreciate that this is a very stressful situation. No one can really tell us how quickly the disease will progress.
thank you again for sharing your health care concern. Please let us know if we can be of any additional assistance.
Dr. Galamaga
Considerations
Detailed Answer:
hello and thank you for sending the question.
I can appreciate that you are dealing with a very stressful situation. Myelofibrosis is a disorder which can become very disabling. At the same time it is very difficult to predict how rapidly the course of the disease will accelerate.
each and every patient is unique regarding how this disease will manifest. Regarding the mutation you described JAK2. there is a medication which has been approved by the FDA for treatment of patients who have this mutation. Interestingly the drug is also been shown to be somewhat effective in patients who do not have the mutation.
I think it would be reasonable to discuss a trial of this medication with the hematologist. Of course every decision should be made with the patient making the major decisions based on the information provided by the physicians. This includes potential side effects of medications as well.
if the spleen becomes very large some physicians have considered radiation to shrink the large spleen. This again is something you have to discuss with your doctor in detail.
Again I appreciate that this is a very stressful situation. No one can really tell us how quickly the disease will progress.
thank you again for sharing your health care concern. Please let us know if we can be of any additional assistance.
Dr. Galamaga
Note: For further queries related to kidney problems Click here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
