Having a rough day

[Packers46]

Having a really rough day with fatigue and leg pain. Grateful for the "Magic Mouthwash for these mouth sores

[Ironj]

Hello packers46

I was reading your Bio and noticed how you were diagnosed. I also was having issues with diverticulitis and on my Ct scan it showed enlarged lymph nodes above and behind my pancreas. A biopsy was done and showed I have SLL.

I see you haven’t started any treatment yet but they want to put you on a BTK ?

What is the leg pain and mouth sores caused by ? Sorry to hear your in pain.

[Packers46 in reply to Ironj]

Hey. I had some leg pain from the CLL/SLL in my car but it's moved into my bones. Oncologist said the pain is coming from my bone marrow making those bad cells pressing on nerves. (Sorry I'm not super technical with this, still new. Just trying to explain the best I can the way they explained to me.) Anyway, There leg pain is also caused by the Imbruvica they've had me on for a few weeks. It is also causing the mouth ulcers and ulcers on my skin and causing my hands to swell so bad you can't see the knuckles. It's not as bad as if I had regular chemo but it's pretty rough but my palatiive care Dr is helping a lot. The "Magic Mouthwash" is amazing for the mouth ulcers and I have a social lotion for the sites and ulcers on my skin. In actually have started treatment about a month so. Just hid that part. It's Imbruvica, which is a targeted therapy. How are you doing?

[GMa27]

Try Claritin without D for leg pain. I use magnesium Glycinate 400 mg for chronic leg pain. 💕

[Packers46 in reply to GMa27]

Hmmm isn't that an allergy med door am I confused as usual...lol. They have me on Gabapentin as well as other things but some days doesn't seem to be doing much on certain days. It's gotten much worse with the Imbruvica as well. How are you doing?

[GMa27 in reply to Packers46]

Yes it's for allergies but it works on nerve endings that usually does the trick. Very popular for CLLers.

I don't like gabapentin. They give that med out for everything...it's the new Prednisone. I was given it last week for minor surgery. Took 2 and was stoned....so loopy. Didn't take care of the pain from surgery.

My friends complain about memory loss, weight gain, etc. It doesn't work well for most.

Research other options. Acupuncture helps me. 💕

[Packers46 in reply to GMa27]

I'll definitely try the Claritin. I have have allergies anyway. Never heard of it. That Gabapentin had totally word out my short-term memory. My poor wife can tell me something and I will have forgotten it within 30 minutes. It's like losing party of your life. Very annoying!

[GMa27 in reply to Packers46]

Ween off the Gabapentin!

[Packers46 in reply to GMa27]

I can't I have neuropathy from diabetes and nerve damage from a bad work accident 6 years ago. I would love to be off it but when they tried the nerve pain was way too intense

[Hidden in reply to Packers46]

i take gabapentin for my trigeminal neuralgia-along with the imbruvica.

[Ironj]

For me my right hand fingers hurt and are stiff. The top of my feet have been hurting since August of this year. And my right side of my rib cage I feel a slight pressure when I lay on my back.

I’ve told my specialist, my local oncologist, my Gastro Dr they all examined me and said it’s not related. Both oncologist say it’s muscle skeletal pain and not to worry. I had a bone marrow biopsy a year ago and I have 5% involvement. All my blood CBC are in normal range, I’m on watch and wait.

But with me any new ache or pain I think it’s a result of my SLL.

[Packers46]

I have the CLL/SLL and the leg pain is almost unbearable at time but had gotten much worse with the Imbruvica. It is unusual to have the pain on your right side rib cage. I have a lot on my left side but they said it's my spleen enlarging. It had gone down pretty my last CT but not had the pain there. Not sure what could be going in with yours but Im not a doctor not did I stay in a Holiday Inn but I would keep after then to figure it out. One thing I have learned since bended l being diagnosed with the CLL/SLL is you have to be an advocate for yourself. Just keep in them and don't take no for an answer. It's their job to find out what's going on and if it's concerning to you then it should be to them. Hang in there and keep me updated. Good luck to you.

[Hoffy]

Go pack! Oregano oil on my tooth brush worked for mouth sores for me. Just 1 drop. See my past posts.

Be well,

Hoffy

[GrapeGrower1]

I grew up 4 blocks from Lambeau Field. Where are you? Wisconsin?

[FruitSnacks in reply to GrapeGrower1]

Milwaukee native here (VT is now home) and new to the wild world of CLL. Hope you get some relief soon, Packers46! And I hope Rodgers & crew gives all of us some happiness in the month ahead. Go Pack!!

[Packers46 in reply to GrapeGrower1]

I actually live in TN but have been a Packers fan since I was a kid old enough to understand what was going on in football. Hope they can have a good playoff run. Guess we'll see.

[GrapeGrower1 in reply to Packers46]

I'm getting a little more confident after the last two games