Cll to Hodgkins lymphoma

[Junebug20]

My husband had Cll 11 years and started treatment in Oct, 2023 with Calquence. It was working, but not as effectively as desired. They then added Venclexta in Dec. He still wasn’t getting better, so after a pet scan and lymph biopsy, it was determined he now also has Hodgkin’s lymphoma. Apparently, this is a very rare (but treatable) transformation. He has had 3 chemo treatments so far (AVD and Keytruda) every other week. He is now slowly gaining some weight back and working to regain some muscle by light exercise and some walking. This is going to be a long journey!

[SofiaDeo]

I am sorry to hear this has happened, but with the new treatments available now compared to even a decade ago, he has a better prognosis. Please don't Google a bunch of older publications about this condition, those statistics are all from before these newer drugs became available.

[Junebug20 in reply to SofiaDeo]

Thanks. No, I’m not mistaken. It is very rare and they are doing a case study on him.

[Jm954 Administrator]

sorry to hear your husband’s news.

From the treatments you’ve described it sounds like you are in good hands and he’s doing well. It is curable so there is definitely hope.

Jackie

[Pacificview]

Very sorry to hear about the transformation, but very glad to hear that he is improving with new protocol. I am praying for both you and your husband. Healing, peace and direction through this storm.As for one of his treatments Keytruda. My Brother received for his cancer Keytruda. It worked when nothing else would. The effect it had on large tumors was amazing. From 6 to 8cm turmors lighted up like a christmas tree on Pet Scans to totally disapearing on same a few months later. Amazing drug and he tolerated it quite well.

All the best to you,

John

[Junebug20 in reply to Pacificview]

Thanks for your encouraging words and the promise of prayer. We will be getting another pet scan in the next month. We are hoping to hear good news. As we see positive responses, we believe we will receive positive news!

[Hilomom]

Hang in there!

[Thursday45]

Just wishing your husband all the best with his treatment.

[Fowey2009]

My husband had a transformation to Hodgkin’s lymphoma in October 2022 (interestingly, shortly after starting calquence). He had 6 months treatment with ABVD and recovered really well. Earlier this year his CLL decided to start to move again so he was put on acalabrutinib.

He now says he feels better than at any time since before he was diagnosed in 2013.

All the very best to you and your husband.

Beryl

[Junebug20 in reply to Fowey2009]

Oh wow… thank you so much for sharing. This is so encouraging to me. Our journeys are so similar. It’s good to hear from someone who has been through what we are experiencing.

[Lara_B in reply to Fowey2009]

What symptoms did your husband have when he transformed?

[Fowey2009 in reply to Lara_B]

Severe fatigue and not wanting to eat. Went on for several months before he was admitted to hospital with very high infection markers. Was seriously ill and in hospital for 7 weeks. Thought we would lose him but 18months later he is doing really well. As soon as he started ADVB he started to bounce back.

[Junebug20 in reply to Fowey2009]

Same symptoms …. Very seriously ill with very low temperature and was listed as failing to thrive. My husband was in the hospital 2 weeks and we felt the same way …. Thought we would lose him. He gets his treatment every other week and is slowly bouncing back as well. He is working at gaining weight and physical therapy to gain his muscle mass back.

[Fowey2009 in reply to Junebug20]

In the last week, my husband has power washed two patios, painted outdoor shed, constructed new garden chairs, taken the old (heavy ones) to the household waste site, lifted large bags of compost for me (I have had a shoulder operation) and moved heavy items around. Two years ago, I never thought that would happen! Keep the faith.

(He is retired from 'work', will be 67 next week)

Beryl

[mrsjsmith in reply to Fowey2009]

Beryl can I borrow your husband for a day please. Those power washers are a complete mystery to me, why are they so complicated 🙄

Colette

[Fowey2009 in reply to mrsjsmith]

That's funny Colette - he offered to show me how to use it and I declined! (His argument was 'if I wasn't here' - my response 'well I'll read the instructions or look at YouTube then!')

[mrsjsmith in reply to Fowey2009]

Beryl the instructions on mine are so complicated I couldn’t even assemble my new one. 🙄

[Junebug20 in reply to Fowey2009]

This is so encouraging to me. That was my husband prior to the transformation. Thanks for sharing!

[Junebug20 in reply to Fowey2009]

So it’s been 3 months since we last connected. He had to go off the “A” chemo (red devil) as it was weakening his heart. Fortunately, the heart has returned to where it was. He has 3 more treatments to go and then another pet scan. He is struggling with neuropathy in his feet, but other than that he is feeling good again. We are hoping once his treatments are done, the neuropathy in his feet will be better.