Hoskins

Hi again greeny123 and I am sorry to hear about your stomach issues…… this indeed is one of the more challenging Side Effects of Treatments.

Some of the chemotherapy treatments used to treat Lymohomas in general….. not just Hodgkins Lymphoma are very strong and can temporarily strip the lining of the stomach…… but it’s important to remember that this is temporary and this will improve once treatment is finished……

I was exactly the same on a number of occasions over my 25 years journey when my 2 rare types of T-Cell NHLs were being treated…… but I keep working with my clinical team to try all the available meds out there to help reduce the effects…. I was never able to eradicate the problems completely during my treatment…… but persevered and as I said, things improved once I was post treatment.

Have you talked this through with your clinical team?….. have they offered any alternative treatments to help this?

As for taking your chances…… I am not sure we will see many group members….. if any, identify with this as an approach they took.

When it comes to Lymphomas….. especially once the condition becomes aggressive the treatments are needed to stop this in its tracks and eradicate it…… not treating it fully may mean that it will progress with a vengeance…… it’s not an option I ever considered so can’t talk from a first hand experience.

I will however recommend that you share this with your clinical team so that they can review your treatment and see if there are other ways forward but also to get a clear indication as to what the future looks like without treatment being completed.

Hello Greeny 123 - I want to reinforce the reply that Mike (The Highlander) has sent to you in that it is essential you discuss how the treatment is going with your clinical team. And I write having had 4 and a half years treatment - some of it made me feel rough. After diagnosis and told of the treatment regime I asked the question what would happen if I refused treatment and straight back the consultant said "you'll die". So I had two choices; have the treatment or have the treatment. So I had the treatment and am now in remission.

I do not know where you are having your treatment but there are a group known as Clinical Nurse Specialists who act as  "intermediaries" between patients and consultants/treatment unit. They have stacks of knowledge and I would guarantee that they have met patients in similar circumstances to you. Speak to them. Valuable lovely people. You are not alone- everybody I have met in the two hospitals treating me (Oxfordshire and Kent) want you to succeed but they can't do it without you being 100% open with them.

Finally - get your laughs and hugs wherever and whenever you can.

So, all the best and have a long distance hug from me,

Pete

Thanks Pete I will get in touch with them