Ibrutinib 7 month's in

[cartwheels]

Doing well and feeling better nodes soon went and bloods are good bear normal . Side effects all but gone still get tight muscles and occasionall back ache put some weight back on the only thing that concerns me is my belly before treatment my belly button was poking out it has gone back in but not like it used to be and I constantly watch it as I say I have put some weight on but my belly still seems big (well to me) could my internal nodes still be enlarged I get worried that if I see my belly poking out it might be the start of ibrutinib failing thoughts please

[PlanetaryKim]

Bad back ache (muscle spasm) is the one problem I have been having since starting Ibrutinib in September. Back ache started the following month. Has not gone away. I am now into my 3rd month on Ibrutinib. So I was interested to read that you have had tight muscles and back ache too. Good work on the bloods and nodes!

kim

[starsafta]

I don't know how large your internal nodes were. Mine started at 35-45mm. Though my palpable neck nodes receded pretty quickly on Ibrutinib, I know that some of the deeper ones are still diminishing in size after 16 months. I know this because there isn't as much of a bulge in what should be a hollow space above my clavicle, yet it still isn't hollow.

It took 12-14 months for the nodes in my abdomen to recede. How did I know? First, my stomach didn't protrude as much. Even better, I could sleep through the night without having to get up for a bathroom break. This was a clear sign that the cluster of large nodes that had been pressing on my bladder had diminished in size. Whether those nodes are still slightly enlarged, I don't know, as I haven't had a CT scan and don't want one unless absolutely necessary. It's enough to know that the meds are still doing their work and things are trending in the right direction.

Be patient. Ibrutinib is on the right path, like the turtle making slow and steady progress. You will soon be doing cartwheels again - or maybe you still are?

On another note, my belly isn't as flat as it used to be either. At 78, I've lost about 2.5" of height in the last few years, while my weight has stayed the same. It occurs to me that the weight was okay for someone 2.5" taller, and that I now need to lose about 10 pounds to accommodate to my shorter self. As my grandfather said at age 86, growing older is h---. (rhymes with bell)

[cartwheels in reply to starsafta]

Thanks or reply very informative

[Hoffy]

With and MRI or CT you will be able to tell. CT gives you Radiation though.

My Last MRI showed the stomoch nodes have gone back down to < 1.5 cm.

I have the same concern. I have felt more full lately and thus I worry about progression. Sometimes feel like i need to urinate more frequent but it is hard to tell.

My clinical corrinator reminds be there are alot of Stomach issues with IB and Venetoclax though.

I see the Doctor in a couple days and I will see if he can tell. Over all I feel good but just always concerned about progression since I am 17P deleted.

Be well

[Hoffy]

With Corrected Spelling....

With and MRI or CT you will be able to tell. CT gives you Radiation though.

My Last MRI showed the stomach nodes have gone back down to < 1.5 cm.

I have the same concern. I have felt more full lately and thus I worry about progression. Sometimes feel like i need to urinate more frequent but it is hard to tell.

My clinical coordinator reminds be there are a lot of Stomach issues with IB and Venetoclax though.

I see the Doctor in a couple days and I will see if he can tell. Over all I feel good but just always concerned about progression since I am 17P deleted.

Be well

[AussieNeil Administrator in reply to Hoffy]

You can always edit or delete your posts by choosing from the menu you get after selecting the 'v' below your submission.

[PlanetaryKim]

Abdominal ultrasound is more than adequate for imaging enlargement of abdominal lymph nodes and spleen. CT scan or MRI not necessary for that purpose. Could be abdominal u/s will only image nodes when enlarged, and not when back to normal. But that's all you want to know anyway. That is the only imaging technology that has been used to monitor size of my abdominal lymph nodes, spleen and liver (because I have refused CT), and it has worked fine.

kim

[Hoffy]

ok