Hairy Cell Luekimia

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your son and I am sure that some of the folks with HCL will pick up on your post.

I have been treated for my type of NHL for many years and I am also allergic to penicillin. This bring challenges when dealing with infections....... and I have had lots.

I would be rather surprised that penicillin would be the cause of any replies but you can only trust in his team to move this in a positive direction. When I have infections my counts can go all over the place but have not (as yet) relapsed.

((hugs))

Hello 

I relapsed twice and have had two types of chemo and rituxamab on the 3rd time. I developed reactions to antibiotics at the first round. It continued in the next 2 relapses. It’s been 7 years since my last treatment and just recently have I started to be able to tolerate some antibiotics. So yes similar experience.

i hope your son is improving now.
Wendy x

Thank you Wendy for your response. My son was given the news that he is now in remission- he has no hairy cancer cells in his bone marrow hooray, I am so relieved. 

I guess with the current pandemic of the COVID 19 virus my son still has to be very careful even though he is in remission. 

I hope and pray all of us will stay safe during this world wide crisis

santi 

Hi , I hope your son gets better soon. Have you discussed with the doctor that your son is allergic to antibiotics?

Best Wishes!

Hi all, I thought it would be good to post this information that was posted in another blood cancer group that has been put out by Lymphoma Action.

The government guidance refers to ‘Patients at any stage of treatment’. This includes people before, during and after treatment.

• Before treatment: people who are on active monitoring (watch and wait) for low-grade lymphoma.
• During treatment: people who are currently having treatment for lymphoma. (Patients on treatment should follow the standard neutropenic sepsis pathways and telephone for clinical advice as stated by chemotherapy unit prior to commencing treatment.)
• After treatment: people who are within 2 years of finishing treatment, or longer if ongoing recurrent infections.

hope this helps, but as we always say check with your team, it does still seem to be a confusing picture when you read posts on various platforms of people who have received the letter and those who have not. As of Monday people can contact their GP and query if they are highly vulnerable or not.

Hi there, thanks for sharing this information here!

Well, I agree with you that it is better to check with the doctors regarding any information related to your disease. Different people have different experiences and each of them reacts differently to each treatment.

In my opinion, nobody can know your disease better than your doctor and what is the best suitable medicine for that disease only your doctor can give the best advice about that. 

I hope you are doing well recently!