Walking By Faith Not By Sight

[Danid18]

I’m a 34 yr old woman, diagnosed July 2018 with CLL 17P Del, unmutated. Initial shock, fear and anxiety of the waiting for results nearly killed me! I’m sure many can relate. I’ve been on Imbruvica since Sept 2018 which has my WBC looking pretty good! However, over the last month and half my lymph nodes have began to swell in neck, under arms and groin. PET Scan was done and showed the lymph nodes are still pretty small, but there is some activity. My thyroid is enlarged! But tsh levels are good. My iron has been very low. I’ve had infusions a few times over the last 2 years. Vitamin is low as well. My pain has been TERRIBLE! I can barely get out the bed some days. I have crazy fatigue and dizziness. My doctor said my imbruvica is still working but mentioned a possibility of adding Venetoclax if Id like.

I’m curious if those of you that added the meds did it because imbruvica stopped working, or to help with some symptoms. Also, is it normal for your lymph nodes to swell sometimes? Does that mean your cancer is growing back. My concern, is transformation, especially with the 17p unmutated.

Any recommendations of medication to help with the pain?

Looking forward to hearing some feedback

All of the testimonies have been inspiring!

[Hidden]

without an actual resistance mutation test-there is no way to actually know if your developing ibrutinib resistance, However there seems to be a 'synergistic effect' when venclexta is added to imbruvica. some studies 'suggest' that they each neutralize the others resistance factors. One doctor i saw thinks it 'juices' up the imbruvica. I actually don't know. One doctor thought i was developing resistance.

i am on both and they seem to work at the moment

[Danid18 in reply to Hidden]

Thank you! How are your side effects with the combination?

[AdrianUK]

Hi there, I think my main advice will be to get a second opinion from a top CLL specialist. It will if nothing else put your mind at rest. If your insurance wont pay I notice that you are in the USA and there is a free service fun by the CLL Society that is web based. It is alwyas a good idea. For sure adding venetoclax seems to becoming a more common idea especially if it looks at all like ibrutinib might not be working so well, or even if someone just wants to try to get to a state where they might be able to come off all medications. So in general terms the idea sounds reasonable but as always it is worth getting a high up expert to give their advice. Recent research confirmed that those who see doctors who see a lot of CLL actually live longer than those who don't. Of course if you are worried about transformation it is reasonable to ask for some confirmation about that. This phrase "lymph nodes are still pretty small, but there is some activity" in your comment would make it sound unlikely that is the case but of coruse an expert would interpret the PET scan itself and give you the reassurance you need, it is one of the main reasons for doing a PET scan in a CLL patient to confirm the absense of signifgicant growth from a transformation in a specific area. As for pain it all depends on the kind of pain and what pain killers are suitable for you. Would definitley ask for advice from doctors bout that as it could be anything from panadol to neurofen or even morphine that may be suitable for you. There is a school of thought that advises CLLers to stay away from panadol or neurofen becasue of the risk of suppressing a temperature and missing an infection, or indeed of causing an increased risk of bleeding. You have an interesting title to your article which makes me wonder if you are a believer as it is a phrase often used in church circles. If you are do drop me a direct message and I can add you to a whatsapp group that exchanges prayers and bible verses etc as well as talking about our CLL if you want me to.

[Danid18 in reply to AdrianUK]

Thank you for your response and information! Yes I am a believer! I’d love to join the group!!

[AdrianUK in reply to Danid18]

I’ve sent you. Private message with the link to join.

[sllincolorado]

So sorry about this situation. I have similar markers and after about 2 yrs on a similar med I had same issue with nodes coming back. I am going to start a new treatment in a few weeks.

What type of pain are you having?

[Danid18]

Thank you! I pray your new treatment goes well! Do you mind sharing what they’ll be putting you on?

My body aches ALL OVER! It’s been so bad!

[sllincolorado in reply to Danid18]

After a few months on imbruvica I was in so much pain I switched to calquence (acalabrutinib). No pain and numbers were great for two years. Numbers still good but lymph nodes coming back so I am starting the ultra V clinical trial. Two new meds plus venetoclax

[4Glory]

Hi, I have had this open all day but didn't get back to it until now. I hope you gain much wisdom here and from what Adrian said with CLLsociety. They are top notch and this is how I found my local support group! ~Lisa