I have been diagnosed with plantar fasciitis in both feet. The doctor claims that 2% of patients on gleevec have the latter side effect. I can barely stand for more than a minute w/out pain in my heels. Anyone experienced or heard of such a side effect?
Plantar fasciitis (PLAN-tur fas-e-I-tis) is one of the most common causes of heel pain. It involves pain and inflammation of a thick band of tissue, called the plantar fascia, which runs across the bottom of your foot — connecting your heel bone to your toes.
I suffered with plantar faciitis for years, even wearing orthotic inserts in my shoes to help the pain. For ten years I did not wear sandals because the orthotics do not stay in place in sandals. This was before my Dx of CML. Then I found a shoe brand called " Finn Comfort". They are quite expensive but worth every penny. I have not worn or needed the orthotics since. I would recomend you get fitted for the right size though, they are made in Germany and have european sizing. Once I knew my correct size I was able to buy them on line at a much reduced cost. I have been on Gleevec for 7 moths and so far no problem with plantar faciitis (knock on wood). Good luck, foot pain is really a pain......
I was on Gleevec for 6 yrs. and have recently switched to Sprycel. The last 2 yrs on Glevec, I had this same pain in my heels, but never went to the Dr. for a diagnosis. The heel pads helped, I just never thought about it being a side effect, but now I am sure it has to do w/ Gleevec. I have not had much foot pain since on the Sprycel, but when I first wake up in the mornings, my feet hurt for a few minutes when I am first walking on them, but it goes away and I don't have much trouble. I am now experiencing cold hands and feet that I can't get warm.
OMG! I'm so glad to find that someone else who was on gleevec that suffered this condition. Not that I would wish it on anyone else but I just thought it was yet another "condition" to add to my complaints. I thought for sure it was weight or bad shoes, posture or whatever. Yes, I too had PF in my right heel for over a year prior to going to sprycel. It was so bad at times I thought I was going to have to have steroid injections. I gave up the hope that I could ever wear sandals again! Guess what disappeared when I started sprycel? Yep, the PF all but quit! BUT... having all sorts of new fun with numbness and pain in my hands which I never had on gleevec. Onc says its carpal tunnel and not neuropathy! Har! If you can't explain it, give it the next best DX! Guess I just traded side effects... I do still feel a little PF in my heel now and then but it seems controllable with OTC heel pads and isn't as painful as it once was. And it is mostly in the morning instead of being all day long like it once was!
I live in Oklahoma where we just had a huge snow/ice storm, so I am dealing w/ the cold hands/feet more than ever. I have never been cold like this before, especially since I put on 50 plus pounds after my diagnosis and white counts got under control. I have always been a very hot natured person, so my husband is very confused with my turning the heat up! ha ha!! It takes a strong man to live with a woman who is going thru menapuase and Leukemia at the same time!!!
I quick update, after going to four orthopedic doctors, all of them blamed my PF on the Gleevec. I couldn't stand on my feet for 2 years and it was getting worse. For some reason I still couldn't believe Gleevec was the cause. I kept looking for literature to link PF to G but couldn't find anything. I finely went to a podiatrist that immediately diagnosed an extreme case on foot pronation (flat feet) which is precursor to PF. He advised on wearing orthopedic pads which miraculously helped significantly!
Now i am walking and standing normally after two years of pain
I too have been diagnosed with PF as well as tendonitis of the R ankle. I am an RN and my feet were just killing me, but no one connected it to the Gleevec. I started wearing Birkenstocks and they are my secret little weapon in regards to foot pain. They also help me at night if I get leg or foot cramps - I have to get up and walk it out in the Birkenstocks. QVC.com and Zappos.com both have a wide selection to choose from. They are a little pricey, but so worth it. Hope this helps.
Well waddya know- I just had dx. of bilaterial PF as well as Morton's Neuroma last month. Got cortisone injections and am on a regiment of alcohol (not the drinking type) injections for the MN. Also, last month had to have a toenail extracted due to an infection. I've been living in sandals-both street & golf. I've found the most comfortable are sandals, Rx Comfort Crocs & Asics running shoes.
I'm on Tasigna & my Podiatrist didn't know of any connection to the drug or CML. So maybe we are on to something here.
I am glad to see this thread since I have been having a lot of right heel pain lately and wondered if it was a bone spur. I found a site on line that has exercises for plantar fasciitis and it does help. The exercise is to stretch your feet (toes upright) towards your shin and hold and the other exercise is to pick up something like a marble with your toes. I find the first exercise helps the most as it really stretches that ligament. I guess I can just add another side effect to the list but hey, I'm here so I won't complain;)Thanks everyone! Have a great 4th! Skittles
Yup - so here we add one from '2012' - I have PF in the right foot, it is remarkably painful. I don't have insurance anymore so cannot change to another med however running out of
stockpiled Gleevec so it all may be a moot point. However studies seem to indicate that Gleevec has remarkable effects on "feet!" Toe swelling - saw this link -
http://www.ehealthme.com/ds/gleevec/toe+swelling I swear my toes have changed shape since Gleevec, gotten thicker (Not the big toe but all the rest) and also turned
slightly but side effects indicating 'deformity' seem rare (be gentle with yourselves looking up Gleevec side effects!).
But I have PF and walking is no fun anymore... neither is life.
Hi: I see these posts are all old dating back to 2009, but I found it weird that this subject was brought up again. I have been suffering with Plantar Fasciitis for the past 6 months or so. Some days are worse than others. I cannot walk without some type of shoe device. I also just ordered the foot wrap that helps lift your heel on your foot. Mine is the right foot also. Unbelievable with all the things we are getting, and what is really related to our TKI drugs?
I would like to tell you both about something I tried and it helped a lot. I bought Dr. Scholl's Pro Pain Relief Orthotics FOR HEEL Pain relief inserts for my shoes. I bought them at WalMart. On the bottom of the package it has relieves pain from plantar fasciitis and heel spurs'. These helped so much but I had to be diligent about wearing them all the time (even in slippers) and before I ever got up from lying down or sitting I always stretched my foot up towards to shin to stretch that heel out. I had PF for about 9 months and then it finally went away...Yippee! Hubby has it now (not on TKI's) and he is now using the Dr. Scholl's and find relief too. Good Luck everyone! Skittles
Yes, I will take a look. I too wear an aftermarket insole from SuperFeet - but will most certainly look into what you say (My foot issues may be complicated by an old but very severe, four surgeries, ankle fracture.
Additionally one can do a 'plantar fascia' stretch (vs. an Achilles stretch) where you put the effected foot onto the opposite knee, then use the palm of your hand to push the 'toes' towards the shin WHILE stabilizing
the heel or even pushing it slightly rearward. HTH. Thanks for the great idea.
Your post concerns me. How are you doing? Have you explored your options when you run out of your Gleevec? I'm sure there are many here that can give you information on who to contact for assistance. Let us know if you would like more information with that.
On the other point, my DH has had no more issues with PF since he did the stretches. He uses the insection of the floor and the wall for the stretch. Puts the ball of his foot on the wall and leans into the stretch. He swore by it.
Thinking of you and hoping you find the help you need to get your drugs.
P.S. I have 14 100 mg. Sprycel if it will help anyone. Contact me privately.
Novartis has a $5000 "total income" limitation on 'giving' one Gleevec. I guess one would carry the Gleevec around in their shopping cart between the sleeping blanket and ground cloth?
A great movie, "The Perfect Storm", really is what happened to me (us). A series of (might've been comical but...) events (a 16 yr job lose, on to Cobra) led to much of this (the CML was found
in my own ordered blood work - DC - through 'insurance' carrier and not paid privately - then it would not have showed up) "JUST" a few weeks before applying for private insurance. My wife got
her's, they denied mine of course. Got a high cost 'risk' pool plan but it was $1100/month just for me - then my job was outsourced - I was on unemployment and so was my wife. She did get a
contract job well paying but no benefits at all (contract jobs are like that).
I don't know if there are people here "looking" for work. I have found that, as I have two degrees and a reasonable thought process and still present brain, all goes well and I'm seen as a candidate
"until" something happens and then the smiles turn into frowns and I am "no longer considered a candidate and, oh, please don't apply to our company again!" I have no 'terrorist' connections ;^)
and I am believing that some 'background' aspect looks into "health" issues (which is illegal but so is 'dead people voting' and...) which shows the CML. I say this simply because I've had HR people
who were so very friendly and optimistic just turn completely the opposite. So no job and no unemployment (which, BTW, means I am now employed 'because' I'm not on the unemployed roles anymore,
isn't that special?) And my wife's contract job will end in 7 weeks... a two month hiatus to allow the company 'not' to give benefits and possible re-hired on the contract after, possibly.
Well, so the choice comes down to 'keeping the home' by paying the monthly (for the next eight years) or telling the bank, "gee, sorry, gotta buy the meds" and seeing my wife homeless? No question
which gets paid. We have both been what is called middle class and have (I had a 401K but went through it to pay for the high risk pool) retirements but they are not ready to take yet and would cost
a big penalty making them near useless in the long run. So that perfect storm is tough... I need an ankle surgery as the other two failed and I can hardly walk, same ankle as the PF... fun... look
like Walter Brennan in the Real McCoys! Hehhehe... Once moving the injury is invisible but it takes a while to kick start in the AM.
So thanks for the thoughts and ideas... a job is essential and it seems unbelievable that such is not available especially given the poor issue of uneducated applicants. All take care!!!
You said that Novartis has a $5,000 income cap in order to qualify for free Gleevec. I believe it is $50,000 if that would make a difference to you. If you still don't qualify you might want to ask them if there are other org. that might be able to help you out. Just a thought.
$50K... where did you see that. We did apply and rec'd a notice after applying that we made too much money... and that the limit was $5K. Of course "they" could
have made a typo, wouldn't that be special. Thanks...will check into it again but We make more than that... at least for another few months.
The Federal poverty level defines the yearly income cap and for a two person household, for oncology meds, it is now $73,550.00. (250% to 500%). Google in Novartis patient assistance application and guidelines or better yet call Novartis and ask to speak to a supervisor. I really think the $5,000.00 was wrong. If you are still having a problem I'm sure your cancer hospital can help you get your meds but I do think once you talk to Novartis you may find out you do qualify. Hope this helps.
I have 'no' oncology hospital. In fact I've not seen an oncologist for many moons (insurance expired in Oct, 2010) - I have a couple of good soul 'oncologists' that have been kind enough to engage in emails conversations. I just had Novartis cover the BCR/PCR blood test and unfortunately the Gleevec is not really 'knocking out' the CML. I am not progressing to the lowest genetic numbers but not getting worse either. My WBC is fine, however I have a number of side effects even after all these years (Oct, 2009) on Gleevec and would love to try Spry... I, we, because my wife suffers along with me (CML is not my only issue, NO! Not insanity... but I've had two very bad accidents and so I am in pain from osteoarthritis and really need a realignment surgery for one ankle so I can walk normally... I cover it well but the first ten steps in the AM are like fire!) and she and I are hoping to sell the house, get debt free, move from CA to AZ and both work at 'retirement' type jobs and use our SS and 401 to help keep a standard.
I WILL look up and again speak with Novartis... I am really wanting the Spry as my oncologist believes the Gleevec is not cutting the mustard. Many thanks.
Hi Doc: Just reading all the posts. I know what your going through. Without going into a lot of detail, we have been struggling along like you. My husband had lost his job 5 years ago after being with the company for 10 years,and we had to cash in his 401K to pay for COBRA etc. Novartis gave me a 9 month supply of Gleevec at the time until my husband started a new job. Now he is with the new company for 5 years, and they have had major cutbacks which meant major low income for us. We do have insurance, but it gets taken out of the paycheck. We struggle with do you pay the mortgage or buy your meds and pay co- pays for all the doctoring. My husband and I both have numerous medical problems, and we ended up cashing in his other retirement fund that we had to make ends meet. So when we try to get help they look at the whole income for the past year including what he cashed in for us to make ends meet.
If they had looked at just the income we would qualify for help. They do not care that we used the retirement money to catch up. Your between a rock and a hard place no matter what you do. I hope things work out for you. We have a lot to consider ourselves for the future with no other resources, unless we sell our house and go into a small retirement area.
Its bad enough dealing with our illness, and then top it off with all the rest. If I find something good,I will let you know.
Hi Roamingdoc and Susan,
Doc, just curious, what was your last PCR # ?. I really hope things work out for you. Have you contacted Bristol Myers to ask them what their guidelines are? They may not have as low a cap as Novartis so that may be another reason to try Sprycel. Also, have you contacted the financial service dept. of a cancer center near you to see about a sliding scale?
Susan, did you ever contact Healthwell? They run out of funds as the year goes on so it's best to contact them sooner rather then later.
I think it is unconscionable that we all have to go through so much in order to get our life saving meds. The stress alone is enough to make one sick. I hope things work out for you guys, please keep me updated.
Hi Judy, Susan,
Mine was 0.0082 which had not changed much for a year. Should have been a thousand times better (0.000082 I believe according to what I understand).
Most states have a Federally sponsored (for some twenty years, not part of the (joke) vaunted Obamacare) Pre-Existing Condition insurance (for Example, here is CA's version and web site:
http://www.pcip.ca.gov/Home/) Other states have 'em and we are hoping to refinance and drop the house payments enough to perhaps afford it right now.
I have two degrees and both my wife and I were professionals in good careers so "this" happens to all types (no money, limited job, insurance waning or ended and no meds) but it is embarrassing
I am "NOT" sure I want to change but might look into Spry... I hate the Gleevec side effects but have learned to live with them, the 'new' unknown ones are a concern with Sprycel "but" I hear (?) there
I will check with Bristol Meyers... many thanks.
No need to be embarrassed, doc. 3 weeks before I was diagnosed in Dec. of 2008 my husband lost his job of 20 years. He had a pretty good severance pkg. and he got another job quickly (only to lose that after 11 mos. due to ongoing recession). He was unemployed for a year before he found another job. I continued to work and carry our insurance which is a good thing because he was dxed with prostrate cancer during that time, too.
It was hard for him to keep looking and being rejected but he finally did get another professional position in his field (at 62) and we are carrying on even though he lives in another town (same state) and comes home on Thursday night and returns on Monday. I'm sure many of us have these same types of "recession" stories. The silver lining for me was that he was home when I needed him during my transition to Sprycel. I didn't love it as much as some and it definitely didn't love me, but we perservered!
I'm not sure I understand the "Should have been a thousand times better (0.000082 I believe according to what I understand)." Is your .0082 IS? Seems pretty good to me.
If you do decide to switch to Sprycel I have a "starter kit" for you if you need it.
Long time in between my replies, sorry.
Yes, the circumstances facing all Americans is dire. Employment, future, foundational beliefs or ideologies, all seem to be in a state of flux (not "flux capacitor!" ;^)
We are trying to move and it seems that AZ will be the landing spot. Going to apply for a high risk pool here in CA so that we don't look like complete "beggars" in
AZ when we have to apply there... of course NONE of them have to enroll a person but I have also downloaded the applications from Novartis.
In talking with my Oncologist via email, he said that a lower BCR/PCR level would be much more desirable - said I should be a 'thousand' times less than that current
reading. So I don't know... I take my Gleevec, getting really low now, every day except Sunday... WBC is all normal, good, and so is the basic blood chemistry. However
I also have to take Vicodin from time to time for unrelated issues and, while I hate the stuff, it seems to interact decently with the Gleevec. Still unemployed but gave
up looking in CA.
I am still wondering if 'employers' get to 'see' that you have Leukemia in background checks or pre-employment routines... that is something that irks me.
I believe in God and I believe in an Afterlife based on that... and frankly it has to be better than this current world where things are so catastrophic for many.
All take care!!!