Palacelover

[Palacelover]

Diagnosed in July 2022 after a PET Scan and a bone marrow biopsy. Placed on a watch and wait regime.

Have been experiencing many colds and chest infections over the last three months.

I am now waiting on a decision from the consultant regarding a treatment regime.

[Petma]

I presume your consultant will take this on board. Make a note of every infection you have, duration and recovery time as that will help him to assess how your immune system is coping with the lymphoma. Some lymphomas are very slow growing and the consultant will not want to treat you until it is really necessary. Do find out as much as possible about your specific lymphoma - use reputable sites ( lymphoma action/ blood cancer) Only then will you and your consultant be able to make decisions re your treatment plan.

I have splenic marginal zone, non Hodgkin’s lymphoma (2020) followed by chemotherapy and immunotherapy but that was curtailed because of Covid. Since then, I’m doing well on watch and wait.

Good luck to you on your journey.

[Palacelover in reply to Petma]

Please forgive the late response to your post, I am new at this game and therefore getting to know the ropes takes a while. Thank you for the advice you offered, which I am taking up. I have the version of Lymphoma they call Waldenstroms Macroglobulinaemia, (W M) and because of the repeated infections, my health care team are considering putting me on BRUKINSA, which contains zanubrutinib; if you have heard of this medication or had experience of it, I would be most grateful of any insights you can offer. In the meantime I wish you well on your journey.

[Petma in reply to Palacelover]

My treatment for my lymphoma ( Smzl) was Bendamustine, which is chemotherapy and Rituximab, which is immunotherapy.

I don’t really know about zanubrutinib but from what I’ve researched it is often a second line of treatment when the lymphoma has returned. I suggest you check this out with your consultant- it may be different with WM. ( from your earlier post I noted you hadn’t had any previous treatment)

Don’t be afraid to keep asking questions. Most consultants will be happy to give you answers.

Wishing you good luck.

[sparklesbw]

I remember, when I was first diagnosed with lymphoma, that I also had colds and infections, which was very unusual for me.

I think, in retrospect, that the emotional trauma of being diagnosed, along with the fairly invasive tests, Had a Temporary weakening affect on my immune system.

after I healed, I went to a Support group with similar diagnosis,and gained more of an understanding of my situation, and felt a bit more in control,

The infections stopped after that.

I am hoping that you will feel better in short order and you can continue to watch and wait, as I did.

please let us know how you are doing. I wish you well.

Barbara

[Palacelover in reply to sparklesbw]

Please forgive the late response to your post, I am new at this game and therefore getting to know the ropes takes a while. Thank you for the advice you offered, which I am taking up. I have the version of Lymphoma they call Waldenstroms Macroglobulinaemia, (W M) and because of the repeated infections, my health care team are considering putting me on BRUKINSA, which contains zanubrutinib; if you have heard of this medication or had experience of it, I would be most grateful of any insights you can offer. In the meantime I wish you well on your journey.