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[Cdclown]

My husband was just diagnosed with CLL. We’re pursuing a second opinion with a CLL specialist recommended from this site. I’m so thankful. A rushed jump into chemo just didn’t feel right. This is great. It gave us such peace to connect with a community of patients and families.

[Jm954 Administrator]

That's good news, I'm glad you found this site helpful.

Please let us know what the specialist says.

Best wishes

Jackie

[annmcgowan]

Sorry to hear your husband had received a diagnosis of CLL. I am pleased you have found this site, it is invaluable to me and many more.

Good luck with the second opinion, keep us informed.

Ann

[Cdclown in reply to annmcgowan]

My learning curve has been nearly horizontal. I’d never heard of CLL! Last year I discovered I have hemochromatosis with higher than normal iron levels in my liver. Even though it’s hereditary I never had iron levels outside high normal range. So I now have my ferritin checked regularly. I encourage everyone to do likewise and do a dna test.

[JigFettler Volunteer in reply to Cdclown]

It was thru CLL that my haemochromatosis was found. Had it not been for CLL - then the iron would have got me. My MCV rose after alcohol on completing FCR...

How was your iron level discovered?

I urge all to have iron / ferritin levels done by mid 40's myabe - mid 50's for women.

Jig

[Cdclown in reply to JigFettler]

I was going to a chiropractor who was also a naturopath. She evaluated my overall health and questioned the fact that I had never had a ferritin test. She ordered it and it was more than double high normal. TheN my primary care doc ordered dna and another ferritin. Confirmed I carry 2 genes, one from mom, one from dad, homozygous for hemochromatosis. Had phlebotomies for 6 months every 2 weeks. It was undetected because I have AB+ blood and was a donor for years so I was self treating without knowing it.

[Sepsur]

Welcome @Cdclown

[Cdclown]

Just knowing we have a community of support is wonderful. Our younger son is having trouble processing any threat to his dad. Our son is 35 and super protective. It was a comfort to him to hear this didn’t mean eminent morality. He’s a bit of an Eeyore.

[annmcgowan]

Hi again, in my experience most of us are diagnosed by accident. I was diagnosed following my 3 yearly mammogram 9 years ago.

Like you I had never heard of CLL.

All I heard was the words cancer and leukemia. I jumped straight to the wrong conclusion, that this constituted a death sentence. I was totally wrong of course.

About one third of people diagnosed never need treatment, your husband may be one of the lucky ones. Even if he does there are many more new treatments than there used to be and the medics are working hard to find a cure.

The future for people diagnosed with CLL today is much brighter than it used to be.

I am in treatment, on ibrutinib after 6.5years treatment free and live a very normal life. I hope you find this reassuring.

You will learn all you need to know on this site and receive practical and emotional support, as and when needed.

Good luck

Ann

[Cdclown in reply to annmcgowan]

I think we’re in a crazy place in our life. My husband is 85 and I’m 73. To discover this stuff so late in life🤪.

[CBeauty in reply to Cdclown]

When I visited my doctor last (CLL specialist, working on latest cures!), he mentioned he had just prescribed Ibrutinib to an 81 year old woman and she is doing well. (I am 61 and all nervous about starting...though I did just start 3 days ago). So...thought I'd pass that passing comment he made to reassure me, along to you!

[annmcgowan in reply to Cdclown]

Don’t think there is ever a right time to get this disease but I know what you mean.

Take care

Ann

[lexie in reply to Cdclown]

My primary care doctor told me that her uncle with CLL had a bone marrow transplant at age 89(!) and 2 years later is doing fine. Age might be a guideline but it all really depends on the individual.

[Kokobean]

Been there, done that. We are so thankful for those who suggested a second opinion when we were questioning our doctor. So glad you did the same.

[Billhere]

Please see CLLsociety.org

They arrange 2nd opinions in a free program.

[Cdclown in reply to Billhere]

I got specialist name from CLL society and we’re following up.

[Cdclown in reply to Billhere]

I also filled out the paperwork for that second opinion. My husband definitely doesn’t want to start chemo if he doesn’t have to. Do you know what the turn around time is for the consultation ? I know it can take a couple weeks before they get all the information compiled.

[Billhere in reply to Cdclown]

I sent that question to CLL Society - lets see what they say.

[Cdclown in reply to Billhere]

Ok thanks

[Billhere in reply to Billhere]

They say most of the time, is used up getting the GP in the hematologists to return records but the program is open and they have funding and second opinions are available

[Smakwater]

Cdclown,

CLL is often viewed as less aggressive when compared to some of the other lymphatic blood cancers for example ALL, AML, CML, and CLL is viewed in many cases to be successfully treatable.

As best I know, Rai staging is still the standard of measure in CLL, as also watch and wait is the treatment observation protocol.

If you have been recently diagnosed, and have not experienced adverse symptoms nor have advanced co-morbid conditions, it is interesting that your oncologist would be suggesting treatment so soon.

I agree that a second opinion is in order. However, consider seeing a credible specialist that can present clearly to you the most recent comparative data for approved novel therapies.

A qualified specialist should also be able to offer an initial perspective with regard to understanding your disease progression and why.

JM

[Cdclown in reply to Smakwater]

Yes we got name of CLL specialist and have faxed all pertinent info. We are very encouraged by all this community responses.

[Analeese]

I got a second opinion from the CLL society. I was very happy and relieved to find that it was very close to what the doctor I was seeing had already suggested. The thing that I find most difficult is choosing a treatment. It’s a little scary to realize that you have options and makes it more difficult to know what is best for you.

Good luck in your journey. You Are in the right place to get information concerning CLL. Not only the practical information but also the personal experiences that help you understand the disease even more.😊

[Cdclown]

The continued support has been wonderful

[Billhere]

They say most of the time, is used up getting the GP in the hematologists to return records but the program is open and they have funding and second opinions are available