16 replies to this topic

[snowbear]

Since I started Gleevec on 12/30/2014, I have been experiencing dull pain and/or tenderness on my right side. Sometimes it will spread to my back. Gallbladder was removed a few years ago without further incident.  I told my Onc about it at one appointment and she felt around and said everything felt good and that my spleen was going down.  All of my liver function tests have come back normal or a bit low (ALT, I think has been low).  

 

Now, the pain has become near constant.  It's not "bad", but persistent and I'm starting to wonder if docs should check into it some more.   I've also been having trouble with weight gain/fluid retention, bloating, and nausea on and off. I'm trying to drink more water 3-5 liters a day and eat melon and cucumbers hoping to flush this fluid out.   I'm not currently taking Tyelnol or drinking alcohol although I have since being diagnosed - just not that much.

 

I have appointments with both my Onc and gastroenterologist in 2 weeks, but I'm not sure if I should wait that long if the pain never goes away anymore?   

 

Edit to add:  I've also started walking 30 minutes a day.  My breathing is getting better and I'm almost back to a power walk pace.  Still too soon to try running, but I'm happy to be walking without the SOB.   Also, my bilirubin levels have been normal to a little low since starting Gleevic, if that makes any difference.

[------]

I have pain in the liver/gallbladder area too and still in the spleen area.  I tell my Onc but he doesn't seem to be concerned about it.  I guess they look at the labs to determine level of concern.

[gerry]

Hi Snowbear,

I never had an enlarged spleen, but I think I remember Trey saying it can take a while before your spleen stops hurting. But doesn't hurt to get things checked out.

 

I also had fluid retention and some nausea - doc put me on Modurectic for the fluid and Maxilon for the nausea. I took them when I needed to. The running will help with the fluid retention as well, once you're back to it. Watch out for salt it is hidden in a lot of things.

[jmoorhou]

I had that pain too, but it went away.  I had my diagnosis 2/3/2014, and I can still feel my spleen a bit, but the side pain has gone away.  Take 400 mg Gleevec.

 

I think Trey said it takes a while for your pancreas to settle down.

[Trey]

Spleen would be left side.  Liver, doubtful.  Pancreas, maybe.  But it sounds like it could be fluid build-up, either near the lungs or around the diaphragm.  Pressure can build up and cause pain.  Ask your doc about that.

[Gail's]

I was thinking pancreas too. Suspicious. Fairly simple blood test to rule it out, but avoiding alcohol, fats, and meat for a few days may help you easily see if it improves. My daughter has chronic pancreatitis and goes on clear liquids for a few days then light stuff as she feels the right sided pain subside. May have to see primary doc since at least my onc wouldn't have a clue what to do about it.

[snowbear]

My left side never hurts and it didn't before diagnosis.  The right sided pain only started AFTER Gleevec.  Today, I noticed no pain until just after I finished lunch - chicken salad sandwich & cantaloupe. There's a little bit of light mayo but nothing too fatty.

 

Pancreas would cause severe pain and make me feel sicker, wouldn't it?  Comparable to gallbladder attack?  This pain is nowhere near that bad....thankfully. 

 

I'm gonna keep track of what I eat and when it occurs and tell my gastro doc when I see him in a few weeks.  I haven't seen him since being diagnosed (my bad).

[Gail's]

Glad you're seeing gastro. For my daughter her initial symptoms are pressure and dull pain that starts after meals. If she keeps eating normally, the pain intensifies. She sometimes vomits when the pain is bad. They removed her gall bladder first. Then later realized the problem was pancreas instead of gb. She knows now how to treat her symptoms. As well, she takes digestive enzyme prescription daily with meals and has added big doses of probiotics. Hope a clear, fixable answer is found for you. BTW, I'm not real sure how the gleevec would cause this vs coincidence. Keep us posted!

[snowbear]

I hope it's not my pancreas (or bile ducts).  That can get nasty.  My cousin was hospitalized for over a month on NPO with acute pancreatitis.  His was from long term use of Tylenol.  He shattered his leg in an accident when he was young and it's given him a lot of problems. 

 

The only other thing since starting Gleevec was I quit Dexilant, a PPI because I discovered that it was making the stomach pain and nausea much worse.  I have been able to control my reflux with Zantac and an occasional OTC Nexium although it almost always makes me nauseous.   I take Gleevec with dinner, several hours before bed, and I would take the PPI and Zantac in the morning.  I do also have a Rx for Carafate.  I can see if that helps some.

 

Thanks so much for all your input. 

[Billie Murawski]

It wouldn't hurt to try a diuretic, when I was on Gleevac I asked my onc for a water pill and he put me on 20mg lasix. Within a couple days I started feeling more comfortable, I didn't even realize how bloated I was. I have acid reflux and at one point I was taken off nexium 80 mg a day, I was in so much pain for 2 weeks My stomache throat side ribcage and right up my back also it was unbearable I called my onc and told him if I didn't get my protonix back I would stop my Sprycel I couldn't live like that. I have been on protonix 4 years now and I'm still undetectable.                 Billie

[gerry]

I'll have to keep an eye on which side my doc looks at. lol

[Dona_B]

I can empathize with you--only I'm on Sprycel and it's back pain lately to the point of spasms. First it gets tight and after picking up sticks a week ago, now painful spasms. Ibuprofen doesn't always cut it. Don't know if its CML related, old injury, or something else. I have a month before I can get in with my regular doctor which is right before my next BCR/ABL.

 

Today, I'm recommitting to more water and less processed food. It's alot easier when there is pain involved.

 

Hope you find out what it is causing your pain and find relief very soon.

[snowbear]

Since I've been taking the PPI again, the pain on the right side is GONE.  It wasn't the Gleevec.  Still have weight gain and major bloating though.  I'm trying an OTC diuretic but it isn't helping much.   Hope doc will give me a Rx for Lasix when I see her next week.  

[snowbear]

The pain is back and now it's constant. I'm still taking the PPI at least every other day.  It's hard to get comfortable to sleep.  Had bloodwork done last night - liver tests are normal.  My weight is still going up and down 10-12 lbs. every few days.  See both gastro and Hema/Onc this afternoon. 

[snowbear]

It's a kidney infection !!    My Onc figured it out.  My liver and kidney function tests came back okay, but my RBC and hemoglobin are much lower than what they have been since diagnosis.  Doc says if it were from the Gleevec, ALL of my blood counts would be low and not just the RBC.  WBC is still within normal limits, but higher than last month and my platelets are a bit high again.  Protein levels are also low. 

 

So she ran a urianaylsis which tested postive for bacteria and blood, and now we're waiting on the culture results to start an antibiotic.  Probably explains my low grade fevers the past few months as well.

[Gail's]

Oh, snowbear, I'm sorry you're going thru this! Sorry also that it took a lot to figure out what was going on. Hope you feel better soon!

[AllTheseYears]

Glad you got to the bottom of things, Snowbear.  I've been taking Gleevec for more than 13 years, and I've found that I have periodic bouts of infections....mostly UTIs.  The periods of infections pass, as do the various pains I have.  I've learned just to treat what's necessary and keep moving ahead.  It seems my infections come when I'm run down physically or unusually stressed.  As for the pains, these seem more connected to other autoimmune health issues, although I can never be sure. My onc and regular doctor seem only to react to lab results. Maybe this is good.  Meanwhile, I try to put a few other drugs besides Gleevec into my body  - only meds for thyroid disease (which is hard to treat on Gleevec) and Ibuprofin for pain. I try to avoid a Rx merry-go-round.

 

I hope you are soon good-to-go. The CML journey can be tough. It can be hard to distinguish if something is wrong with the body (from Gleevec or other causes) .... or with the head!  I've learned to be persistent with my medical team if I'm convinced things are out of whack. I'm glad you were, too.