Out of the Loop

[zentangle]

As I have been out of the loop after my SCT, I presume everyone is au-fait with this:

bbc.co.uk/news/stories-4292...

potentially life-changing news?

Love to all,

Steve

Zentangle

[AussieNeil Partner Administrator]

Yes, this news item has generated lots of interest.

More importantly Steve, it's good to hear from you. How are you going?

Neil

[zentangle in reply to AussieNeil]

I'm very good, thanks, Neil. Two years this side of auto SCT and no sign of either CLL or MCL. Yourself?

[Cllcanada Top Poster CURE Hero in reply to zentangle]

So good to see your post Steve, I often wonder when people drop out of the loop...

I hope they are sipping Mai Tais on a tropical island or getting sore feet touring the Louvre. 👣

~chris

[zentangle in reply to Cllcanada]

Well this one's just carrying on as normal. Hope you're well.

[AussieNeil Partner Administrator in reply to zentangle]

Fantastic news Steve. I'm glad that the BBC article encouraged you to drop in.

I hope you can post a summary of your SCT experience sometime as we have a few members who have undergone them or are contemplating them.

I'm still in W & W, with my downward trend in platelets and haemoglobin seemingly slowed since I started IgG.

[Newdawn Administrator]

Good to hear from you Steve and glad you’re doing well!

That news story certainly has generated a great deal of interest on the site today. Good to see CLL as a high profile news item.

Take care,

Newdawn

[zentangle in reply to Newdawn]

Nice to hear from you, too. You okay?

[Newdawn Administrator in reply to zentangle]

Ramping up a bit now Steve with ALC over a 100, reduced immunoglobulins and spleen pretty enlarged. No cytopenias or bad constitutional symptoms yet but awaiting results of a full body CT. All predictable and not unexpected on the CLL journey I’m afraid.

Keep on keeping well!

Newdawn

[zentangle in reply to Newdawn]

Best Wishes, as ever.

[PaulaS Volunteer]

Great to hear from you again, Steve. Great that you're doing well.

I'm with Neil in hoping you'll tell us your stem cell transplant story - lots of people will be interested...

Best wishes,

Paula

[Psmithuk in reply to PaulaS]

Thanks, Paula - have been wondering what STC stands for. So glad it went well, Zentangle!

[Peggy4]

‘Carrying on as normal’ sounds just great to me Steve. Really nice to hear from you.

Peggy 😀

[scarletnoir]

It is a good news story, isn't it? It certainly cheered my wife up - I don't worry (much) anyway!

[Oleboyredw-uk]

Good to hear from you again Steve. Everything the others have said, when you have time and if you feel inclined please share info on you SCT.

BTW - Clarity - good story and I'm one of the 50.

best, rob

[Reem-ayoub]

Neil, Newdawn, Steve and all the lovely people here. We have been out of the loop as well. Just to refresh your memory my husband Raja was misdiagnosed with CLL and ended up with MCL. So he underwent Bendamustine and Rituximab treatment but transplant doctor was not pleased with results after 4th round so we were switched to RDHAP ( which is one arm of the Nordic protocol). He had 2 of those and his stem cells were collected as he was in remission. After collection he had 2 more cause doctor insisted he wants to do the full course since Raja was fit with no comorbidities. That did not come without a price. After each session his counts would go so low he would have febrile neutropenia so back to hospital. After a period of 2 month break from all the chemo he went in for SCT. That was not so bad. He had BEAM conditioning. Got his cells on August 1st. 21 days later we were back home. In the 6 months following SCT Raja has had CMV reactivated plus PCP pneumonia. The CMV messes up his bone marrow but thankfully he has been able to get things back on track. Now we are looking into IVIG to support the immune system before he can start maintenance with Rituximab. Bottom line, it is a rough road but with a good team of doctors and some vigilance on ones part, all obstacles can be overcome. Just be patient with yourself and give your body time to heal. Please do not hesitate to ask any questions. I would love to be of any help as other people’s experience helped us tremendously in dealing with Raja’s condition. Best of luck to all. Reem