This is new and overwhelming. Wife is diagnosed and we need support

Hi jgjacksonmn1

If you like to read more about
Polycythemia Vera (PV): Causes, Symptoms, Diagnosis, and the Role of JAK2 Mutations
https://swaresearch.blogspot.com/2025/02/polycythemia-vera-pv-causes-symptoms.html
or
Erythrocytosis (Polycythemia) https://swaresearch.blogspot.com/2025/07/erythrocytosispolycythemia.html

My heart goes out to you both.

I am so sorry you're going through this.

I am so sorry to hear about this change in your wife’s health. Are you seeing an MPN specialist? I have ET, so I am not totally familiar with treatments, but there seem to be new mylefibrosis treatments, including with combinations of drugs. Also, maybe clinical trials with new drugs that can help. I seem to remember a treatment for low platelets. Bless you and your wife. I hope she quickly finds an effective treatment.

I can understand being scared, even shocked, by the sudden change. I pray that you get the answers and care that you both need. Holding space for you both.

So sorry you are dealing with this. It is overwhelming. I can relate.

In January, was diagnosed with High Risk Myelofibrosis 3+/3 -only 6 months after being diagnosed July 2025 with Chronic Myelomonocytic Leukemia. In July, I was told it was wait and watch.
In January after my third Bone Marrow Biopsy, I was told I need a Bone Marrow/Stem Cell Transplant.
That process has begun. I have had a steep decline since December.

My Oncologist chose VONJO/Pacritinib to treat Myelofibrosis symptoms until my Stem Cell Transplant occurs.

VONJO has been a game changer for me. I went from spending half or more of the day in bed and doing very little to living almost normally in just 12 days on Vonjo!!!
My blood test numbers changed for the better dramatically in just 10 days, my prominent spleen has reduced quite a bit and is no longer uncomfortable, fatigue has gradually improved quite a bit and my breathing is a bit better. Im am so thankful for these improvements.

Mayo has a terrific clinical team. Speak to your Oncologists Nurse about support and resources if you have not already.
My symptoms started in October 2023. Until I came to Mayo, I was seen by many Specialists for the various symptoms Ive been having including daiy intense itching and was dismissed.

Sleeping has been a challenge at times, keeping the room cool/cold helped me including ice packs. I also slept more upright relieving the pressure on my spleen and making it a bit easier to breathe.
When sitting, a pillow mid lumbar helped with spleen discomfort.
I bean drinking Protien shakes and eating small amounts often because I was so weak and worn out.

You are not alone. I hope you get answers soon and wish you all of the best.

Welcome to Mayo Connect, @jgjacksonmn1 Well, this news sure clipped you both off at the knees. I’m so sorry to hear about this rapid change in health for your wife. For most people, PV (polycythemia Vera) may remain stable for many years with varying treatments. While in some patients the natural progression of PV can lead to bone marrow damage, resulting in scar tissue formation, which characterizes MF (myelofibrosis).

Having an enlarged spleen is pretty common with myelofibrosis and really, any form of blood cancer. One of the functions of the spleen is to store extra blood cells. When someone has MF, extra blood cells made by the bone marrow can build up in the spleen, causing it to swell. If there is extensive scarring in the bone marrow impeding production, the spleen may also start producing blood cells adding to the build up.

When the spleen is swollen it takes up room in the abdomen where it can push on the diaphragm and surrounding organs. So that may interfere with breathing and eating. I’ve gone through that myself and truly empathize with your wife with her shortness of breath and difficulty in sleeping. For sleeping she might try lying on her right side, her back or propped up with pillows to keep pressure off the spleen which is under the left rib cage. Sometimes a recliner can work wonders for this. Also helpful is to eat very small portions instead of larger meals. I ended up nibbling throughout the day which worked out much better.

I know this is a huge shock and overwhelming right now because the change was so rapid. This may have been progressing for some time and reached a point where symptoms began. Your wife is now taking Jakafi which has a good track record for reducing spleen size and improving symptoms of myelofibrosis. But it does take a little time for the body to process the extra blood cells. So hang in there!

What other tests have been done for your wife to diagnosis this change? Have her lab values changed significantly? A bone marrow biopsy (BMB) can be of significant value for assessing bone marrow involvement such as scarring from the MF and also for staging a disease. Has your wife’s hematologist/oncologist suggested this test?

I feel for you, I am in the same situation. My husband was diagnosed with MF in January 2025 took us by total surprise. Our Oncologist here in town referred to a doctor that specializes in myelofibrosis. At first you feel totally helpless but 99 platelet fusions later we are thankfully seeing improvement. He is on Vonjo and Vidaza. His blood counts are improving and he is feeling stronger. There is always new medicines coming on that gives hope. My husband is to old for a transplant, he is 81. It sounds like your wife was in good health at the beginning, there lies your hope if possible pursue the trans plant. Keep the faith, with lots of prayers and medicines, the sun will come out for your wife and you.

My heart goes out to your wife and you. This community is so helpful and supportive, keep reaching out.
Please add my prayers to your support team.

I have been diagnosed with the same cancer around Thanksgiving Nov 25’. I was recommended to see a hematologist because of blast cells. I had been having progressively discomfort in my lower back and abdomen swelling and no longer being able to use the stairs, came on pretty fast. Was on a does of 40mg of Jakafi a day. Numbers started to go the wrong way so backed down to 20 mg a day. I understand it is scary, I am still dealing with my condition. Have noticed after dropping the does down my abdomen has started to swell again. It had gotten better. Breathing is still an issue. I wish you & your wife the best. Keep the faith that you find something that will help.

Your wife is lucky to have you there to support her. And it sounds like she is getting good care. Please take good care of yourself so you can continue to be her support.
Of course you are both scared. We are all afraid of what we don’t know or understand. So, coming to this forum that is such a great resource of other’s experiences will be helpful.Worry does not help so do what you can to stay positive!
We are all praying for you both and her medical,providers.