CLL SUPPORT GROUP OR CHAT

Hi Mr Bean and a warm welcome to the Community.

I am Mike and I help out around our various Blood Cancer groups.

I know from experience having been on my cancer journey coming up to 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..

   CLL, SLL and HCL

…….. support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

I will keep an eye open for you in the group. 

Hi Mr Bean 

I’m Anne, one of the Community Champions here on the Online Community, and I've just popped on as I think you might have meant to post this in the CLL group where I can see you've posted before. I'm sure if there are other members of the group who live in the West Midlands they'll let you know about any CLL groups that they're aware of. The quickest way to get to the online group is to click on my link.

You could also put your postcode in the search bar in In Your Area and it will bring up what support services are available to you locally.

Wishing you all the best

Hi I put it under CLL and nothing in my area unless you know to something

Thanks 

Shaun

Hi again Shaun.

You will most likely not be able to find a specific in person CLL support group…. a group like this would be very niche.

Do check for a local Maggie's Centre as they run regular Heamatology Support Group's and the one I attend does have someone with CLL in it.

As I said before in your other post in the CLL group I would recommend you check out Lymphoma Action.

Lymphoma Action is the only UK Lymphoma, CLL, SLL and HCL 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. 

Thank you buddy much appreciated thank you for your time I'm on my own I feel with this since 2022 have my bloods once a year thats it. I did some research few years ago found they do a mixed group session no one there same as me so pointless and very stressful I went to a few very  stressful for me so never went again. With the Greatest respect to anyone out there with cancer I find it difficult to cope listening to others who are sick with different cancers guess I'm looking for something that's not done a CLL group 

Good morning Mr Bean  I understand the loneliness…… I live in the Highlands and as my 2 T-Cell NHLs are 8 in a million and 4 in a million rare……. It took me 16 years to actually be sitting in the same room as someone with my same Lymphomas….. this was in a Maggie's Centre

I can understand the frustration about mixed cancer type groups as the challenges can be very different between blood cancers and solid tumour cancers….. but when it comes to Haematological (blood cancer) groups there are significant similarities across blood cancers.

As I said you most likely won’t find a dedicated in-person CLL group….. you can look at the CLL group we have on the Community one but it does tend to be slow.

But I will say that I talk regularly with people who have CLL on the various Lymphoma Action Support Platforms.

Thank you buddy how are you feeling now the Highlands you say how beautiful and majestic the majesty of the whole place, yes I will try to look into it but the trauma still sits with me I had a bad experience so it would be hard to trust it that's why if... and it's a big if I did try it again for sure it would be a different center I get why it took you 16 years it's just not easy sitting and worrying about the depth of what someone might say as I can't here doom and gloom forgive me but it sits with me the words of this one guy who sat next to me who said he had 2 weeks.. just stopped me in my tracks all I was thinking of is how long left could I say I'm going to the toilet and leg it..  I had gone the rest was a blare I was in dream state total shock.. it made me physically ill but that's me we are all different..  I had a life threatening accident that made me this way, then ontop of that whilst I was off sick for the first time in my life.. in my later years of life to I was diagnosed bam double whammy have that life said to me after working from age 15 wow I had no words simply head in the sand that's how I've been but thank you Mike thehighlander your a good soul all the best Shaun 

Good morning Shaun Mr Bean  it’s important to not let one bad experience stop you from connecting in further with more specific Heamatology groups….. as there is support out there.

The important thing is that you may go for many years and your CLL…. like many other slow developing Blood Cancers will not develop to the point that treatment is needed and you can be on Active Monitoring (Watch and Wait) for some time.

So don’t wait around looking for something to happen that may take years…… and even if it all kick off…… like many slow growing blood cancers…. it’s very treatable.

I am doing great…. due to my Perfect Storm with me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from Oct 2013 to Oct 2015 was rather complicated…..See my story

But I am now over 10.5 years out from my last treatment, I turned 70 last Nov and I am living as good a life as any healthy 70 year old can be living,

Always around to chat.

Wow you are doing well its been a long time did you ever read about ivermectin and fenbendazole? They use a protocol mix with them or did you have any vitamins high does etc a lot of forums use this stuff ??? It's a cancer treatment mate 

I have indeed been on various Vitamins for a good few years after my second SCT that are all prescribed by my medical professionals.

Yes I have heard of Ivermectin and fenbendazole but these are not approved or recommended as cancer treatments by medical institutions 

While they have shown some potential in laboratory settings, there is a lack of clinical evidence to prove they are safe or effective for treating cancer in humans.