CLL and treatment

Hi Mayb and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your CLL journey to date.

I am Mike and I help out around our various Blood Cancer groups……. I live in Inverness so know Edinburgh ever so well we did live in Dunfermline at one point.

I don’t have Chronic lymphocytic leukaemia (CLL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) …….

I was basically on Active Monitoring (Watch and Wait)  for 14 years but eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a number of active members on the group at the moment so let’s look for them to pick up on your post.

You may find this link very helpful Top tips for the day of your chemotherapy

Although CLL it has the word Leukaemia in it, in Hematology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.

Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..

Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.

They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.

They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

I am always around to help more, just to chat and to answer questions ((hugs))

thanks.

Have a read and watch the Edinburgh CLL support conference that should be on the site by next week. The consultant from Aberdeen was so positive in his presentation with good response rates and several methods of treatment. I am Watch and wait but trying to get rid of the negative thoughts and get on with living.

Hi nickyj53, thanks that.

Having come to terms with and lived with the condition for 8 years, I do get on with life., so much so that cll  seldom enters my mind, other than at blood test time. My wife and I  also enjoy several holidays each year.

My current anxiety is obviously coming to terms with the fact that the cll is now progressing, and the uncertainty of how this might impact on us as we move forward. 

Having had some comfort from my consultant about the effectiveness of the proposed treatment, we are optimistic about the future. It is, nevertheless, a worrying time. 

I'll look out for the conference that you mentioned  thanks again.

Hi Mayb,

Sorry to take so long to reply to your post. I understand it must be a very worrying time for you.

My husband was diagnosed with CLL around September time and he is on exactly the same treatment as you will be having - Obinutuzumab, through a drip and Venetoclax in tablet form. He started the infusions 5 weeks ago and is now on tablets as well. As he is 82 and has other health problems, we were very anxious how this treatment would affect him, especially when we read the leaflet explaining side effects. But, I can honestly say, so far, he has been absolutely fine, although a little more tired than usual. He's not on the highest dose of Venetoclax yet so we can't say with absolute certainty that he won't have any ill effects.

It was quite stressful to begin with as he was having to travel to hospital twice a week - one day for the infusion and one day to have his bloods checked and to see the haematologist. That meant two long days, sometimes from 8 am to 6 pm as the infusions are done very slowly.

He is now only going to hospital once a week and then every month he has to go twice a week (for the infusion as well). Yesterday he went to have his blood checked and pick up his tablets and he was only there 3 hours (and some of that time was spent in the cafe eating a bacon sandwich!)

Please let us know how you get on. And if you have any questions we'll be happy to help if we can. Wishing you all the best!! xx

Hi

Thanks for your very informative and reassuring message regarding your husband's treatment. I had a CT-Scan earlier this week, which will give my consultant the final piece of information regarding the progression of my CLL.

My wife and I are off to York tommorow for the week and I'm hopeful that we will be in to see my consultant soon after returning home to discuss the way forward.

Thanks again and best wishes to you and your husband for the furture.