Comments on: Living With Myelofibrosis (Part 1 of a 4 part-series) https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/ News Resources Sat, 04 May 2013 01:16:50 +0000 hourly 1 https://wordpress.org/?v=6.7.2 By: susanashephard https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3410 Sat, 04 May 2013 01:16:50 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3410 In reply to Nancy Galligan.

We are sorry to hear about your mother’s condition, Nancy, and it certainly seems that she is a strong and resilient woman. Unfortunately, we are unable to provide any specific treatment recommendations through our blog site. But we do have a series of excellent videos from our myelofibrosis specialist, Dr. Ruben Mesa, discussing treatments available and suggestions for managing this condition. Here are a few videos that may be helpful to you and your mom. http://youtu.be/Y9pKHy0Pn1E http://youtu.be/GNlRtUZKdRE http://youtu.be/ovF4_1Q4bcE

]]> By: Nancy Galligan https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3409 Fri, 03 May 2013 21:14:26 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3409 My mother was diagnosed with PV in 1999 … she has been on and off of Hydroxurea since the diagnosis was made. She is a farmer’s wife and is one tough lady. With the exception of major digestive issues and bleeding ulcers a few years ago, she has lived a great life. She seemed to hit a roadblock in early March, and has gone downhill since. Her RBC dropped from around 15 in mid-March to 8 last week … they gave her two units of blood last week, and it’s back to 10.9. She underwent another bone marrow biopsy last week, and we were told yesterday that she has moved into the “Spent” phase … with the development of myelofibrosis. I do not believe that PV is something that her doctor has seen much, and I think with her advanced age (78), he doesn’t really have either a lot of knowledge, or much interest in her case. She is exhausted, has no energy level, no appetite, is dropping weight again, and is winded just waking to the shed (which is not far from the house at all). I’m at a loss as to what to do to help her. Do I ask him for a prognosis? She is of the opinion that less knowledge is better, but I feel that we need to know all we can in order to help her. My mother absolutely NEVER complains about anything. She wants no sympathy at all! She has a very deep faith which comforts her. Please help with any suggestions at all. Thank you all so much.

]]> By: robert de jong https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3408 Sat, 09 Mar 2013 04:57:48 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3408 Hi Louise
I have had polycythemia vera for 14 years and developed myelofibrosis 6/12 I am now on a trial drug related to the Jack2 Gene. This drug has helped eleviate some of the symptoms , my spleen and liver are still very large but stopped getting larger. overtiredness is a problem but can be managed by resting when it hits .I live in Australia cCheers Robert

]]> By: lucy scaglia https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3407 Fri, 08 Mar 2013 00:05:42 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3407 In reply to Sharon O’BRIEN.

hi sharon my spleen is big i take hydrorexea for nothing 1500 mlg i do not know what else to do

]]> By: lucy scaglia https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3406 Fri, 08 Mar 2013 00:03:36 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3406 hi i have mylofibroises ask me any questions i live in toronto ontario i see hematologist at st michael hospital let me know if you need more info

]]> By: lucy scaglia https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3405 Thu, 07 Mar 2013 23:59:41 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3405 i have mylofibroises i had 8 bouts of chimo i’m taking hydrorexea and allopurinol sometimes i do not take my medication my spleen is so enlarged …i feel sorry for myself i live alone my husband passed away my children 3 of them do not believe that i’m so tired i had tia like a stroke on christmas 2012 i live in fear of a stroke constantly.

]]> By: Sharon O'BRIEN https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3404 Sat, 16 Feb 2013 16:23:14 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3404 Hi Bruce .. I am cdn too and I know what you mean about the speed of treatment. I have a hematologist right now and I am not pleased with him. But because of the lack of specialists, you really don’t have a choice. When were you diagnosed? I was diagnosed 9 years ago and I’m finding it hard to find people to talk to about it. Tke care and good luck!

]]> By: Sharon O'BRIEN https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3403 Sat, 16 Feb 2013 00:56:38 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3403 Hi Betty .. I was on hydroxurea off and on for 2 years. I had no serious side effects. It reduced my counts but did little to reduce mt spleen.

]]> By: Sharon O'BRIEN https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3402 Sat, 16 Feb 2013 00:51:59 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3402 Thank you very much Susan .. very much appreciated
Sharon

]]> By: susanashephard https://newsnetwork.mayoclinic.org/discussion/living-with-myelofibrosis-part-1-of-a-4-part-series/#comment-3401 Fri, 15 Feb 2013 00:22:20 +0000 https://sharing.mayoclinic.org/?p=9671#comment-3401 In reply to Sharon O’BRIEN.

Thank you for contacting us, Sharon. You made find the following YouTube links helpful on essential thrombocythemia. http://youtu.be/mx66GhG6kvA, http://youtu.be/h0vGV6BgBHg,http://youtu.be/-zA8UsRUAdM.

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