I have been unwell and with white blood cells going a bit bonkers for a year now. I had a bmb 3 weeks ago. The good news, the PV was stable, the bad news, I now also have lymphoma, type to be determined. I have a ct scan today to see if there's a spread to lymph nodes. I see the consultant in 2 weeks when they have all the results. Its a face to face in the hospital. I am very anxious about it. I gave up reading about lymphoma as there are so many types. I am trying to read around it to get a basic understanding.
Is anyone else dealing with this? It does feel a bit challenging. So any help and information would be appreciated.
Thank you
Mal
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Mal42
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Hello Mal42 - so sorry that you are starting down the same emotional turmoil that I had a couple of years back (though I really hope you are able to have confidence in your haem team) I am ET JAK2+ and my lymphoma is a super rare one (non Hodgkin nodal marginal zone lymphoma stage 3) - non curative + had a battle to get it diagnosed - I had radiotherapy + am stable at present. It will be a very scary time for you (I can’t lie - it was pretty much rage got me through, not to mention the support of this forum)! - their are so many lymphoma types + treatments are different for each - you will I imagine have to wait for test results to find out what road you will be on and be in a better position to move forward. Keep us posted, rant on the forum when needed (I know I did) and I wish you all the best. Anne-Marie. x
Dear Ann marie. Thank you for sharing that. I’m sorry to hear about your condition , you provide an inspiration for the road ahead. I see my consultant in 2 weeks. She is lovely and kind. I will give info then. Mal
Hello Mal42, so sorry to hear your news but stay positive and you will get through it. Everything crossed for you it is the best outlook you can have. If you need to talk, we will all be here for you. Kindest regards Aime xx😻😻
This is indeed a trying time. Having one cancer doesn’t unfortunately protect us from having a second one. I have friends who had lymphoma and they all got through it. Something like this hits us nevertheless. I’ve had swollen lymph nodes on the sides of my neck since April and am just watching them at the moment.
We never know which hand of cards we will be dealt. Just take step at a time, make sure you have a Good Team of doctors and move quickly as to not lose precious therapy time. It is also empowering to be informed and proactively involved with whatever therapy is given to you
Please eat clean foods, drink clean water, clear your home of chemicals. Do everything to reduce any unnecessary strain to your immune system. Take time to love yourself every day by doing what makes you happy, no matter what. I will pray for a correct diagnosis, that the doctors will be spot on with the treatment and that you will stand strong.
We are all here for you. Let us know how you are. 🙂 Anag
Thank you Anag. I do need to look more into diet etc. My consultant is lovely and I feel she cares. I hope you are ok with your condition and that the lymph nodes sort themselves out. I'll know in 2 weeks what sort of lymphoma I have.
It’s so important to have a good trusting relationship with your doctor!! It’s worth half the therapy. Whatever it is, be ready to embrace the problem and go. I do hope you find a doable and really healthy diet. I will be grateful if my lymph nodes calm down! I will know more in Sept. Meanwhile, prayers for you and me.
Hi
Sorry to hear your news. My partner had Non Hodgkin Lymphoma - his symptoms were back pain which went undiagnosed for around 6 months. Scan was the key to diagnosis. He had fortnightly chemo and went into remission It’s 10 years now. Lymphoma treatments have really come on. Wishing you the very best and as others have said we are all here for you.
My brother was just treated for a high grade non-Hodgkin's B-Cell lymphoma. He started on CAR-T chemotherapy, but ended up needing surgery. Between the chemo and the surgery they do appear top have removed all of the cancer. He is recovering well and it is hoped treatment was curative. My brother is not MPN-positive, though we both do have Neurofibromatosis Type 1, which predisposes us. My daughter and I are both JAK2 positive. I have PV. She has ET. There is some research looking into the familial link between MPNs and lymphomas. It is possible that the MPN mutation my predispose to something like a lymphoma. practiceupdate.com/content/... .
I do hope that you will get a clear diagnosis ASAP and will find successful treatment. Please stay in touch and let us know how it goes. You will be in thoughts and prayers.
Thank you Hunter. It has been such help to hear from everyone. The familial link is interesting, my dad died of myeloma, many many years ago. I have wondered if that predisposed me to PV and now the lymphoma. I am JAK 2 pos. I hope you and your family keep well.
We are doing OK. My daughter and I are participating in a Familial MPN Study by Dr. Angela Fleischman. Trying to get more family members, including my bother with lymphoma to participate. They are particularly interested is him. Dr. Fleischman mentioned a potential link, but I am not familiar enough with the genetics to really say. I am not sure anyone really knows for sure. Theoretically, I think the JAK2 Haploype thought to be responsible for the predisposition to acquiring the JAK2 mutation could be responsible for a predisposition to other concerns stemming from hemapoietic stem cells (which the lymphoid cell line also comes from). All three of us also have Neurofibromatosis type 1 as well. This is another genetic condition that also dysregulates a kinase system (RAS-MAPK) which is downstream from the JAK-STAT pathway. The NF1 gene is a tumor suppressor gene that when mutated no longer does the job as well. JAK2 and NF1 mutations both increase tumorigenesis and decrease apoptosis. How they work together is largely unkown as the database is too small. The only current finding is that we are more prone to leukemic transformation.
I do hope you get good news soon. Many lymphomas are treatable. I hope that turns out to be the case for you.
Sorry to hear this Mal. I hope everything goes well at your appointment. You’ve had some encouraging response, so I hope you take comfort from this.
My first cousin had Non Hodgkin Lymphoma in his twenties. Because of this, I have wondered if there’s any familial connection with Lymphoma and MPNs. The good news is he was treated and has been in remission for over ten years.
Keep us updated
Mary xx
Interesting It could well be familial for some cancers but having said that my partner who had non Hodgkin also 10 years in remission has no cancer at all in his family neither do l. Not a single family member -
I’m not in any position to advise you, especially since you don’t know what kind of lymphoma you have. I just hope that you find the best treatment possible and hope that this next challenge isn’t too difficult.
Thank you everyone, so good to hear from you. I'm feeling more positive, my lovely consultant called to tell me the results of the ct scan. Lymph nodes, liver and spleen slightly enlarged only, so that's good. A full consultation in a week. I hope you are managing this heat, I'm finding it hard. Keep well everyone.
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