Treatment for Cll and Sll

Hi Tracy, good that a route forward has been put in place so that you can get on with life. I have not had these drugs but as you are expected to continue working I would hope that there would not be significant side effects.

As you can see this group is rather slow but let's see if any member who has been on these drugs can help you out.

I will highlight the Lymphoma Action Buddy Service as they can match you up with someone who is further down the line and is able to give you support from the point of having the T shirt ((hugs))

Hi

That would be fantastic 

X

Do also remember that Lymphoma Action also run regular Lymphoma Online Support Groups...... I highly recommend these groups..... I actually run one of the Scottish Groups and it a great place for support ((hugs))

Hi Tracy, yes large glands is a common reason to go for treatment.

Note the following on the choice of treatments.

V & O will undoubtedly shrink the glands and do it in a rush.

The problem with the speed is that TLS, tumor lysis Syndrome, is often a side effect which can be very dangerous.

In the UK, that drug combination is mostly given to patients while they have a few days in hospital, so that the bloods can be closely monitored. This being a new drug it is not yet known if MRD, Minimal Residual Disease, can be reached, so that the drug can be stopped completely.

Alternatively the drug Calquence, or Acalabrutinib, works very much more slowly, has minimal side effects, and hospitalization is not required.

I had to make a similar decision myself, and I chose the Calquence, Acalabrutinib, and my only side effects have been a few blood blisters in my mouth.  These are expected to fade away after a few weeks.  Already I have more energy and the drug has worked to reduce the swelling of glands.

Obviously I am not a doctor, and don't know the results of your fish testing etc., but you might wish to query your CLL specialist on his/her choice of treatment drug.

Good luck with what ever you choose.

Dick

Hi

thats really helpful appreciate the advice will definitely look into that.

Its a shame to have treatment early on when I’m stage B but my glands are like eggs and lemons so consequently I’m getting head ache, ear ache and nerve pains which could be due to swelling and pressure on my nerves!!

My throat swells too causing discomfort and such tiredness when this is happening which is more often now.

 Thanks Again 

 Tracy x

could you please point me in the direction of the Lymphoma Scottish group as i have recently been diagnosed and i have now had a PET scan and getting a CT scan on Friday then my results on 9th January as they may need to do another biopsy or a bone marrow biopsy to decide what treatment i will get and i am a bit stressed and would like to connect with others who may have had a similar experience

Hi Janie1234 follow this link to the Lymphoma Action Lymphoma Online Support Groups...... I totally recommend these groups..... I actually run one of the Scottish Groups and it a great place for support ((hugs))

Thank you I have done