We have hope !

[Lizlashley1]

Did anyone else in England listen to Find My Cure on BBC radio 4 last week????!!!!! Seriously wow!!!!! A drug trial at St James Hospital, Leeds is having a massive impact on CLL participants. 2 non chemo drugs are given. The results are having the participant at almost undetectable in under 6 months!!! We have hope guys!!!!! Listen to the podcast.

[ElaineW]

I did. Blooming marvellous news Liz and I too was absolutely over the moon to hear about the trial success. 'Changing the landscape' was a very apt description used by Prof Hillmen I think.

I have watched, waited and yes worried, quite a lot in the early days (15 years now) I listened to the programme and then skipped down the street with glee. I wanted to shout from the rooftops, so I did. There was also a BBC news article on the web site. I sent a message of great news and a link to the article - to my sister and a few close friends. Two replied busy, would read later (no comment since) and two didn't respond at all, zilch, nada (which is quite out of character for them) My husband wasn't even interested in listening to the programme.

So your post has made my day.

I have ended up quite down at heart really thinking I could do with a different lot of family and friends tbh with whom to share the perhaps life-changing good news.

Indeed yes.Yay😁

[Shooey in reply to ElaineW]

Hi Elaine

Your last paragraph made me think, I haven’t had support offered from my family, all who live locally, I might get the odd text asking how treatment went that particular day but that’s about it. My partner shows very little interest in the disease itself but at least he comes with me on treatment day. It would be good if one of my siblings offered to give him a break and also as different company for me on the 120 mile round trip. My son is excused as he lives in Australia!! I’m not a needy person but just an offer of support would go a long way to make me feel they actually give a damm. Maybe it’s me but I don’t expect to have to ask, I expect them to offer as I would.

Moan over!

Shooey

[Wroxham in reply to Shooey]

This is a very common situation I believe and would be worthy of a separate post.

ElaineW Shooey

Bet we would get some interesting

Comments/views about supporting.

Our problem is our condition is mostlyunseen. Although my neck is now huge one side! I now take no notice of doubters, hurtful but dosent change anything.

I think there must be many people in our position.

ps sorry Liz didn't mean to hi-jack your post. Yes I did hear the broadcast and it is good news

but it all takes time to prove facts and work through the system.

Sue

[Shooey in reply to Wroxham]

You’re right Sue, a lot of people don’t see it as a ‘real’ cancer as we try and carry on as normal during the watch and worry period, in my case 10 years before treatment. I’m with you on the hideous neck thing, before treatment started last Oct mine was so swollen both sides that my chin seemed to join my shoulders, not a pretty sight! Fortunately back to normal now, although I did ask at Addenbrooks if they would throw in a nip and tuck to get rid of the flabby skin! Anyway, I digress, i’ve had more support and interest shown by my neighbours than I have family, they always pop in after treatment to check if i’m Ok which is lovely and more than my siblings do! It’s not always physical support we need, sometimes a chat and a good old giggle works wonders.

Take care

Shooey

[pkpayne in reply to Shooey]

I feel the same way Shooey!

[ElaineW in reply to Shooey]

In the end I figured the thing to do was simply to explain to my husband and my sister that I thought the programme was important, and that I would be really very pleased if they would listen to it. I may also speak with the two friends at some time, but that doesn't feel so important right now.

I figured it was just better to explain directly , not to expect people to read my mind , and walk around being resentful when they didn't.

I do have a tendency to cover up, act like everything is all fine when it isn't and hide any vulnerability. Today I haven't done that and I have learned something.

(It is also for the best that most people can't actually read my mind 😂)

Yes sorry for the hijack Liz😣

[country76 in reply to ElaineW]

Yes, my family never talks about it either or when I have good news there is total silence and ignore me. Actually, my husband has occasionally made the remark "when she dies"?? I defend myself and state "I am not dying" reversing it saying "when you die". It's rather childish.

I actually saved his life last year, he came home from a camping trip septic. Refused to go to the emergency room claiming he was Ok and wanted to watch the basketball game as he went into La La and land passing out on the couch resulting in me phoning 911. They had to carry him out of the house to their rig. If I hadn't of persisted and stayed with him he would have died.

That makes this website also very important. We have others in the same boat to talk to, who don't criticize or make fun of us.

I have a few friends with Cll who also are great to talk to and share what is going on. My dermatologist mentioned she had a patient also on Ibrutinib with the same symptoms I have. It was comforting to know there is another patient on ibrutinib with the same symptoms.

Sorry to Rant. This month it's a touchy subject.

[Ladydi49]

Is there a link to the podcast? I'm curious as to the name of these 2 drugs and whether or not they are here in the U.S.

[AussieNeil Partner Administrator in reply to Ladydi49]

However the drug combination of Ibrutinib and Venetoclax is also being used in trials for previously UNtreated patients. This known as the CAPTIVATE drug trial"

healthunlocked.com/cllsuppo....

[ABloor in reply to AussieNeil]

Is this trial for particular Fish results ie 11Q or 17P or anyone with CLL who hasn't been treated as yet?

[Lizlashley1 in reply to AussieNeil]

Are you able to share the link to the podcast with everyone? I'm not very technical!!!

[Wroxham in reply to Lizlashley1]

Liz

If you click on the highlighted blue section in Neil's reply it will take you to the information you seek.

Hope this helps.

Sue

[Berrytog]

I think we all heard it or of it and it will have impressed some more than others depending on our particular deletion and how far we are down the track since diagnosis. For those that are in dire straights it must be good news but I fear we are a long way from a cure, which is what we would all like, and it remains to be seen what remission comes of it but, whereas a cure would be great, the results so far are remarkable in reducing the symptoms, so even if one has to fall back on treatment now and again, how bad it that.

In the future I think we will be seeing less or the watch and wait and more of immediate treatment with these new drugs as opposed to rounds of Chemo first.