30 replies to this topic

[samycat24]

okay.So most of you know about the severe pain I've been having in my limbs, and the fact I even had to go to the ER for it. I put up a post awhile back about the side effects for Gleevec since I read that the pain is called bone pain and it';s listed as a side effect of Gleevec.. Now here's where things get very interesting..

.so went to my Oncologist and his reaction to everything was quite shocking to say the least. He not only refused to give me anything for my pain I've been having in the limbs..but accused me of being suggestive to things I'm reading on the internet and said that Gleevec doesn't cause any type of bone pain, especially the kind I'm describing. I then told him I hadn't even looked up the side effects until AFTER I started experiencing the digestive/bathroom problems and the severe limb pain. He said , that he had never heard of Gleevec causing these side effects and that there was nothing he could do for me. They took my blood, my $30 co pay, and said if my molecular tests comeback good then I don't have to see him for another 3 months.

He actually seemed shocked when I said how much pain I was in, and the idea that it was the Gleevec shocked him. I couldn't believe this was happening. He actually accused me of being very suggestive to other peoples influence, especially with my diagnosis. But the fact that he seemed angry even insulted when I asked about switching to a different medicine besides Gleevec, caught me off guard. I mean he's an Oncologist..I'm sure other patients that have been on Gleevec ave discussed their side effects with him. And everyone says how wonderful he is but both my boyfriend and I each saw a totally different side of him. Now I still have trouble getting around, It hurts so bad I cry, and my Dr. is a complete wack a do anytime you bring up the side effects. And the fact that he said Gleevec doesn't cause these effects..when I started having the pain I looked up the side effects and bone pain was right there in black and white..

So now what do I do? He's only run the blood tests so far..no marrow aspirations, nor do I think he will ever do any. And after the way he behaved I really don't feel comfortable seeing him again. should I report him for the way I was treated? Who would I even report him to? And is that a justifiable enough excuse to find a different Oncologist? Any advice would help!

[Emily87]

I can only speak to the behavior, not the treatment but: Would you take that kind of dismissive or rude attitude from a server in a restaurant? A Sales Associate at a retail store? NO. You would report it to a manager and take your business elsewhere. Bottom Line: You deserve respectful treatment. You are the customer in a service providing establishment. A lot of doctors don't realize that while we do consider ourselves lucky to be treated by them, THEY should feel lucky that we have chosen them to treat us.

I'd say bring up with your doc how dissatisfied you were, OR tell one of the nurses in the practice about it.

[Marnie]

Find a new oncologist.  I'm on my 3rd, and this guy is wonderful.  

[Tedsey]

Fire your onc.  Then, think of it no more.  Sadly, you are going to have to deal with CML for a long time.  Why add more torture to your life.  I am on my second.  I am much, much, much happier.  I have an ally now, not a foe.

Wishing you all the best,

Tedsey

[hannibellemo]

Your oncologist is not only a rude jerk but he sounds incompetent to treat CML. Run, do not walk, to the phone and look for a new hematologist/oncologist. It looks like you live in a part of the country that should have loads of choices. Be up front and tell him what you are looking for in terms of a physician and what you have had. You may have to try a few before you find one that "fits"!

Good luck!

Pat

[Marnie]

Pat's advice is good.  When I switched oncs this last time, I typed up a letter of introduction and told the doc exactly what kind of person I needed to work with.  I had gotten a wonderful recommendation from an acquaintance with CLL.  Anyway, the new doc knows what I'm looking for and, by gosh, he's very, very informative and communication with him is fantastic.  You need to demand the best for yourself. . don't settle for someone who is not giving you what you need.  Every appointment is money out of your pocket into his/hers.  You need to know that your money is well spent.

Marnie

[CallMeLucky]

Your Dr. is a jack as*.  Unfortuanately anyone who studies and passes the exams can become a doctor, regardless of their personality.  Your Dr. is either lying to avoid having to deal with the issue, or has so few patients on Gleevec that he does not understand the side effects and how to treat a patient with CML.  If it were me I would tell him that I was switching doctors because his lack of knowledge regarding the side effects of the treatment I am on disturbs me and I am unable to trust my care to someone who is unqualified.  See how he likes that kick in his god complex.

I would suspect your doctor does not specialize in CML.  He is probably used to treating other cancers and thinks Gleevec is a miracle and his CML patients should be greatful they are alive, kiss his hand and leave quietly.  Screw that!

We know all too well that life is too short to have to deal with people like this dope.  I hope you find someone who treats you with the respect and care you deserve.

P.S.  My oncologist is a CML specialist, I tell her often about the pain I get in my legs and how it is one of my top two side effects (fatigue being number one).  She nods and says "we know these drugs cause these types of side effects, I'm sorry".  She doesn't offer all that much in the way of solutions, but she acknowledges that it is real and she shows me compassion and respect.  We deserve their respect, both as humans and as their paying customers.

[janne]

It is quite troubling that your doctor seems intimidated by your having acquired information from a source other than himself, and in your case, your source was subjective report to begin with, they were your symptoms, you were not trying to dream up something to talk about. So what if you found someone else who reported the same symptoms.  Unfortunately there are practitioners who view informed patients in this manner. These discussion boards are the greatest source of information for investigating symtpoms and finding relief. I don't know what to do with someone like that. I had a primary care practitioner who behaved similarly and I gave her WAY too many opportunities to repeat the same annoying behavior, which she did. I am not sure why they dismiss patient complaints so easily when we are using drugs of this nature. I am still with my first oncologist after 3 years and I hope I do not find reason to change doctors but I sure understand why someone would do so. Yes I do believe it is a justifiable reason to look for a new doctor. You have to have someone who hears your concerns.

[Rissa]

You've never had a bone marrow biopsy?  You really need to find another doctor.

[Tex]

I don't usually post here.  It's not my disease.  But I saw your thread out on the main page and got curious.

I do know that we are emotionally tattered when we get a cancer dx.  Sometimes it's possible to misinterpret what the doc said and/or how s/he  said it.  I think I'd give it a week and review the conversation in my  mind.  If it still tracked like you described it, I'd definitely fire my  doc and find a new one.

However, from a completely  different perspective, it is a tendency we all have to relate every  ache, pain and sniffle to our disease/treatment.  There is a possibility  your pain is not from the Gleevec but that something altogether different might be happening, something unrelated to your CML.

It  might be a good idea to touch bases back with your PCP and see if  there's another path to pursue.  Maybe you'd do well by seeing an  orthopedic doc?  Maybe a neurologist to track the pain?  I really have  no idea who you might want to see for what but I've learned the hard way  that not everything is cancer-related.  Not even while we're fighting  cancer.

Blessings

[jrsboo]

First of all:

Tex: you know NOTHING about this disease, so please don't try and give medical advice, especially when everyone else on this board KNOWS that bone pain is a side effect.  Just traumatizes poor Stacy again!

Second:

Stacy: Run don't walk to a new CML expert.  Not just any old hemotologist will do.  These are very specific drugs that are too new for others to really read up on.  My onc (who is a CML expert) not only recognizes all the side effects, and reports new ones to the drug companies, she has prescribed Morphine and Dilaudid for me for the pain.  I always have a 30 day supply of both on hand at all times.  The pain does not last all the time, it cycles in and out.  Usually every 4-5 weeks.  But if I over extend myself, it comes back sooner. 

Please find a new oncologist.

Caroline

[nathaliece]

Stacy,

I completely agree with the group.  I, too, had to switch oncologists in the first 4 months of my treatment.  My first oncologist was extremely compassionate but did not know much about CML and did not admit that.  Each of us is different but eliminating the stress of questioning my oncologist was really helpful for me.  You might share with the group where you live and see if anyone on this board has a recommendation for you.  Hang in there!

Best,
Nat

[samycat24]

Thanks everyone! I called my insurance today and found several Oncologists in my area..I called one and told their office why I was wanting to switch and they completely agreed with me. especially when I told them I had had no bone marrow work done. I have a great feeling about this Dr and see him on the 28th. I called my other Onc to have my records sent over to the new guy and they were completely fine with it. I'm actually looking forward to seeing this new guy and going at this from a new perspective. I don't necessarily want to go the narcotics route but if I have to for a short amount of time just to get through the bad spots I will. Thanks all for putting everything in the exact words I needed to see inorder to make this decision easier. I initially thought maybe I was over reacting to the situation but looking back I know I wasn't. My Onc's rudeness and abrassive manner was uncalled for and I am so happy I was proactive in choosing another. I'll keep everyone updated on how it all goes. Thanks again!

[jrsboo]

I too was concerned about the narcotics, until I realized that I need them.  I hem and haw every single time, spending time in writhing pain, trying NOT to take the pain meds.  Then once I do I feel better.  I usually only take them at night so I can sleep.  Mostly during the day I can distract myself.  But since we aren't supposed to take OTC n-saids, not much left for us to use.  I find that if I take an Aleve or a Tylenol, I end up with blood in my stool.  So.............narcotics it is.

Oh, and I am totally proud of you for taking the proactive steps to get a new doc!

Caroline

[CallMeLucky]

I was looking through this thread and I wanted to make a statement on behalf of Tex.  I don't do this to confront Caroline, but I feel it is important.  While Tex does not have CML and is not very familiar with our particular challenges, Tex has certainly been through enough.  He is a kind and supportive member of LLS and was one of the first to respond to me when I was in my diagnosis stage and did not know what I had.  He is an AML survivor who has been through treatments that most of, thankfully, will never go through.  He is a veteran in every sense of the word.  I know his intentions when posting here were for the right reasons and while in this case the likelihood is that Stacy's issues are related to TKI drug, his points are valid.  We do often tend to think everything with our health is somehow related to CML now that it is the focus of our world.  His perspective, derived from his experience, is worth listening to.  I don't think we want to cultivate a community that excludes anyone from sharing their opinion.  Regardless if a person has experience with our treatment or not, they may bring something to the table we can benefit from and I would hate to think individuals from other parts of the board would refrain from posting here for fear of getting their heads bitten off for daring to speak about something they don't have first hand knowledge of.  I for one, welcome other points of view.  We should also remember when dealing with other members of the LLS community, that whether we think of ourselves as "lucky" or not, most of us have it better than most of them, so I think for multiple reasons we should try to extend them a certain amount of courtesy.

Tex - thanks for your input here, I hope you will not shy away from sharing your advice in the future should you see a post you feel inclined to comment on.

Best to all.....

[simone4]

I reply to people on the other boards and if any of them had scolded me

like you did Tex, I would be terribly hurt.  Although bone pain is a known

side effect, not everything can be attributed to that. I broke a bone in

my foot last summer and thought that it was Gleevec pain. Trey as well as others

here remind us that is not always the cancer or the treatment.

As Lucky said, Tex has given some comfort to many people on these

boards.  We all earned a right to be here, so please take moment

to think before being harsh.

[jjg]

Lucky that is a really nice post - I'm with you on this one. I've seen some discussion boards which bring out the worst in people but this one is nearly always the opposite. I think that we should also remember that sometimes (sadly many times) people post on here when they are feeling far from their best.

Happy posting to all...

[Tex]

I'm sorry I somehow offended you.  However, please quote where I offered one piece of medical advice.

Interesting thing, there's a guy who posts on this forum (I believe it's the CML forum, anyway) who's never had a transplant.  Yet, he posts on the transplant forum occasionally.  Should we not let him post because he hasn't had one, even when he has something to say, an important perspective to offer?

Believe it or not, many AML patients have bone pain.  It might have a different itiology, I don't know.

Still, there are miscommunications between doctors and patients.  Sometimes we spend years chasing what we are sure are leukemia/treatment related conditions only to find out we've lost those years that we could have been treating the actual disease instead of chasing the wild goose.  I did that.  I'm in worse shape than I would have been because I couldn't shake the idea that it had to be graft vs host disease from my transplant.

In other words and to change bird metaphors, even if it walks like a duck and quacks like one, that doesn't mean it's necessarily a duck when it comes to symptoms.  If it's traumatic to hear that, imagine how much more traumatic it's going to be if/when it turns out one has been focusing on the "obvious" answers and it turns out that person should have been looking elsewhere.

I certainly hope my comments didn't traumatize anyone.  That said, I'll certainly be glad to stay away.  This is my first post here in over 20,000 posts to the LLS forums in their various incarnations.  But I'll be sure that if I live to post 100.000, I won't encroach upon your terriory.

As I said, this isn't my disease.  However, you might consider being kinder to well-intentioned visitors in the future,  Of course, that's your decision.

Lucky, Simone, jjg and those of you who have written privately, Thanks.

[hannibellemo]

Tex,

I, too, am sorry you were treated so harshly on this site. I like to visit other LLS discussion boards and I tend to think of you as the "Trey" of Living with AML. You said nothing out of line, in fact, we've talked over and over again on this board that we can all just 'get sick' and sometimes it just has nothing to do with leukemia.

I wonder if there wasn't a bit of "Mama Bear" in that reply. We do seem to be protective of our own and a perceived threat to someone could produce an over reaction. Not an excuse, just a possible reason.

Please continue to monitor and know that your interest and input are appreciated here.

Pat

[Tex]

Well, I do love to follow a firestorm, even if it's only a drizzle of one.  So I saw this note and felt a desire to respond to it.

From what I've seen in Trey's postings, he is much more attuned to the science than I'm capable of being.  The help he brings is knowledge and I don't deserve comparison with his knowledge.  I tend to focus on what I can bring to the table which is perspective.  I'm pleased that my contributions are sometimes seen as useful.  So, thanks.

But I'm fine.  However unintentional it was, it seems I've hijacked this thread a bit.  Please return to Stacy's concerns and I'll head on back to my places of familiarity.

Blessings