34 replies to this topic

[tazdad08]

I know that Tasigna can cause the spleen to get enlarged at times. I have been having lower left abdominal pain on and off for a little over a week now. Monday, and now today, it has kept me partially bent over. I thought the spleen was below the rib cage until I used good ole Google. lol.. I know that the human anatomy does vary a little from one person to the next, but not a huge amount. I can feel that the area right at my belt line is swollen internally. Its hard to the touch. The pain now hurts all the way into my back. Kidney stones, spleen? Any ideas? And I do realize that I may end up at the dr. I just hate to go for every little pain since so many of our pains come and go on a regular basis. 

[rcase13]

I am on Tasigna and have mild left abdominal pain since diagnosis 9 months ago. My spleen was very large and parts had died. I am told it is probably scar tissue. I have learned to except it as my new normal. I have to wear clothing loosely or it aggravates it.

[Gail's]

Really lower left bad pain could be sigmoid colon acting up. If you're worried go see the dr.

[rcase13]

Mine is definitely the spleen. It's been the same pain since I was diagnosed and had my spleen CAT scanned. It is back to normal size but probably has permanent scarring.

[tazdad08]

rcase13, does it hurt in rib cage, or below it? I have been admitted into the hospital about a week after diagnosis (almost 4 yrs ago) with "unexplained" abdominal pain. The CAT scan did show enlarged spleen too. The drs wanted to do exploratory surgery and I opt out. I have had this issue come and go over the course of my journey.

[rcase13]

It's just under the ribcage. It isn't pain anymore just discomfort. I just have to live with it. It's like the blurry vision. Welcome to CML and TKIs.

[Gail's]

Sorry tax, thought you said lower left abd pain. I have pain where my spleen was enlarged and it's now a normal size. It's not bad, just a dull ache or burning sensation at times.

[Taylor]

With Tasigna it is likely pancreatitis and you should get this checked out ASAP if you have also had diarrhea and vomiting by chance.

[rcase13]

I haven't had pancreatitis and my numbers are good.but I figure eventually we will have problems with liver, pancreas, Thyroid and heart. I had issues with Thyroid immediately. I'm only 44 so hopefully they come out with something that doesn't cause all these issues. My doctor keeps talking about switching from Tasigna to Gleevec now that we have my CML under control. Gleevec seems less toxic.

Tax my pain or discomfort is above the belt line closer to the rib about 6 inches from the sternum. Are all your numbers for pancreas and liver good?

[Trey]

The spleen can take a long time to stop hurting after it shrinks back.  The severe enlargement damages it and it needs to heal, which can take quite a while (well over a year).  Even after the spleen has apparently healed there can be residual discomfort or "ghost pain".  The time I could feel my spleen most was while driving because of the position of the seat along with the seat belt which caused discomfort -- not so much pain but more like something poking me in the lower left abdomen.  This is because the lower ribs are shorter and the rib points can poke on that area.

 

Complicating this issue, colonoscopy showed I have a diverticula of the colon at about the same location, and 50% of people over 50 years old have at least one.  These can also cause pain intermittently.

[kat73]

Another thought:  pleural effusion? Not exactly the "right" spot, but referred pain or discomfort could perhaps be causing it?

[tazdad08]

All numbers good. Thyroid issues from Tasigna, but control with meds. Today the pain is much lighter. Probably wait it a few more days and see if it continues to decrease. 

[rcase13]

The spleen can take a long time to stop hurting after it shrinks back.  The severe enlargement damages it and it needs to heal, which can take quite a while (well over a year).  Even after the spleen has apparently healed there can be residual discomfort or "ghost pain".  The time I could feel my spleen most was while driving because of the position of the seat along with the seat belt which caused discomfort -- not so much pain but more like something poking me in the lower left abdomen.  This is because the lower ribs are shorter and the rib points can poke on that area.

 

Complicating this issue, colonoscopy showed I have a diverticula of the colon at about the same location, and 50% of people over 50 years old have at least one.  These can also cause pain intermittently.

 

Wow, Your description of the spleen pain is identical to mine. LOL I could not have described it better. And yep we just have to live with it. Same with the blurry vision. Been to all kinds of doctors and they can't say for sure but they are pretty sure it's Tasigna causing it.

[Marnie]

Regarding the blurry vision.  You should have your eye doc check it out.  I had an eye exam a week before diagnosis.  No cataracts.  I had an eye exam after being on Gleevec for 1 year.  Severe cataracts.  Rapidly worsened the past few years.  I had cataract surgery on both eyes last summer.  Vision is now perfect (except for some astigmatism).  I'm convinced that Gleevec and Sprycel caused the cataracts, though I'm sure I had been desitined to have them.  Just not at age 50.

 

See your eye doc.

[Buzzm1]

Regarding the blurry vision.  You should have your eye doc check it out.  I had an eye exam a week before diagnosis.  No cataracts.  I had an eye exam after being on Gleevec for 1 year.  Severe cataracts.  Rapidly worsened the past few years.  I had cataract surgery on both eyes last summer.  Vision is now perfect (except for some astigmatism).  I'm convinced that Gleevec and Sprycel caused the cataracts, though I'm sure I had been desitined to have them.  Just not at age 50.

 

See your eye doc.

during my last eye exam, developing cataracts were mentioned.  Since beginning Gleevec over 5 years ago, I've had continual eye discharge; have been flushing my eyes periodically, with an over the counter solution, to combat the buildup and resultant irritation.

 

regarding lower left abdominal pain, not to cloud, or distort the issue, six months ago my PCP had me go in for a Medicare preventative care ultrasound looking for upper abdominal artery problems (apparently a common problem among the aging) ... during which I asked the examining technician to take a look at my spleen, as I too experience lower left abdominal discomfort; he did as I requested and stated "have your doctor order an ultrasound of your kidneys" ... I asked what he saw but he just repeated "have your doctor order an ultrasound of your kidneys"  My PCP refused to order a kidney ultrasound saying that nothing was seen by the radiologist, but my kidney function is declining, which she attributes as normal for my age.  I googled it, and Gleevec can effect the kidneys.  I'm in the process of walking down my Gleevec dosage ... just dropped down to 200mg, on my way to 0mg, if PCRU holds.

[tazdad08]

I was told by my eye dr that chemo puts a waxy film on the back side of the eye. I know there is a difference between our tki's and "chemo".... but she may be onto something. She said she had patients that was legaly blind while on chemo, but regained fair vision after treatments.

[rcase13]

Yeah I have had my eyes looked at by retina specialist and they see early stages of cataracts. Nothing we can do at this stage. I am 44 and had clear vision prior to starting Tasigna. Just have to live with it.

[kat73]

Buzzm1 - You're right about the kidney function and Gleevec.  I had been on Gleevec for 5 months when my creatinine, which had ALWAYS (checking CMP's back for years right up through diagnosis) been completely normal, well below 1.0, started coming up into high territory.  BUN also.  So I was sent for a nephrology workup (including ultrasound, but not biopsy) and the conclusion was there was no kidney disease or architecture problem - it was an effect of the Gleevec.  The plan was, as long as my creatinine stayed stable at a "low-high" (which it has - always coming in at 1.0 to 1.2) then I would be fine.  I'm followed by the nephrologist twice a year.  However, there was one more consequence:  the kidney dysfunction/low red blood cell production also tripped secondary hyperparathyroidism, for which I take Calcitriol and Vitamin D.  No side effects from these and not expensive and they ward off any future problems.  But still.  Here I was, perfectly healthy (except for the pesky LEUKEMIA) and the TKIs (I've been on Sprycel for years and the lab values have not changed) caused this other stuff I have to deal with.  Took a long time to get over feeling like damaged goods, the fix is in, what else is there that will arise to doom me, etc.  And yes, Marnie, I know what you mean about "but not at 50."  My vision gets worse every exam, my hearing ditto (hearing aids now), balance, strength, stamina, thinking skills, ditto.  I "expected" (!?) all this, but NOT THIS EARLY and not so much and not all at once.  But there it is.  There's no such thing as a free lunch and my CML numbers are really good.  I read somewhere once that the same gene that causes sickle cell anemia also confers resistance to malaria - yin and yang, the bad with the good.  I'm convinced my DCIS would never have recurred (after radiation and Tamoxifen - good grief - everything done right) TWICE if the TKIs had not done some unlooked for dance on my chromosomes in pursuit of the CML.  We know that the brakes and accelerators of cell growth are not all "good" or "bad" in all body places and situations.  Is a puzzlement.

[Buzzm1]

 kidney function and Gleevec. 

kat73 ... what I'm dealing with  ... 

Creatinine <=1.34 mg/dL last 5 tests ... 1.11, 1.26, 1.26, 1.32, 1.32 

Glomerular filtration rate, nonAfrican American >=60 mL/min, ,,,  last 5 tests >60, 56, 56, 53, 53

 

Buzz

[kat73]

Buzz - Every doctor I've ever asked has said nobody pays any attention to GFR.  In the next breath, they say it's a just a way of monitoring, if you have an existing problem.  Kind of an eye-roller, but I let it go.  Your numbers don't look too alarming, but of course the upward trend is worrisome to you.  I could be wrong, but I don't think I personally would buy the old age argument.  If you could talk one of your doctors into ordering a nephrology workup, which would include the ultrasound, I think you would be well-served.  I was told a biopsy, which is definitive and diagnostic for various bad things, is invasive and risky and most times the other tests have told them what they need to know without it.  The rising creatinine is really justification enough to send you to a nephrologist.