16 replies to this topic

[SunNsand]

I would like to know what others experience regarding their Oncologist treatment. I'm specifically wondering if your Onc treats you as a whole person or are they concerned with only your blood counts? I find my relationship with my Onc a little confusing. When I was first diagnosed, the nurse made sure I understood that my Onc was going to be my Dr. from now on. (her exact words) It's been a year now and I've come to realize my Onc cares only about the blood counts, which is good, I want someone to care about them! My problem is, when I bring up the subject of other health issues for my Onc, that may, or may not, be related to CML/Gleevec, (how do I know??) my Onc gets a blank look and tells me to see my PCP. (No I'm not a chronic complainer lol) In my imagininary perfect world, I think an Onc should treat the whole person. How do they know if these other health issues are related to CML/Gleevec or not? It seems these days if your foot hurts, you see a foot Dr., if your GI system is kaput, you see a GI specialist, etc. Dr.'s tend to treat only certain areas of the body, except for the PCP. I think when someone is diagnosed with a chronic illness such as cancer, someone should be assigned to look at the whole picture and maybe, they might be able to tie all the health issues together. It seems as if no one wants to take that responsibity, at least in my case. I also understand how beneficial it is to see a specialist, especially when you are having health problems in one area only, such as a broken leg, you see the Orthopedic. I think this system we now have makes it too easy for people's health problems to not be properly diagnosed or not diagnosed at all.

  Is my Onc relationship common? My sister has had cancer 2x's and she tells me this is the norm.

SunNsand

[Marnie]

Hi, SunNsand:

I'm lucky in that both my onc and my PCP are great.  When I see my PCP about general health issues, I fill him in about what's going on with the CML, side effects, etc.  He always asks, and has given me great advice on dealing with side effects.  When I visit my onc, I bring a huge list of questions, which I compile between visits.  Most of my questions are in regard to the CML directly, but I include other things, as it's hard to tell when something is CML-related or not.  Both of my docs give me great answers and reassurance.  However, I try to do a lot of research so that I pretty much know the answers before going in.

I wouldn't be all that concerned if your onc doesn't answer your non-CML related questions.  He/she IS a specialist.  Your PCP deals with typical health issues on a regular basis, and probably has better answers than your onc.  I'd just be sure to keep BOTH docs informed of what's going on in all areas.  I have an eye doc appt coming up, and have done some research about potential Gleevec vision side effects, and will bring some print-outs to my eye doc.  I will expect him to keep himself up-to-date on what's out there. . .but I think it's MY job to inform him of MY situation.  Same is true with my dentist.  I do a lot of the research, and then I talk with him about it when I see him.  I don't expect him to have the answers at the tip of his fingers, but I do expect him to be aware of my situation and do his homework.

Marnie

[dee145]

I agree totally!!!!  If I bring things up he says see the family dr.  If he is going to treat me for leukemia and the gleevec then know the side effects and all about it.  There are things I have told him that I have learned from on here or doing my own research.  I have QT interval of the heart and he didnt even let my heart dr know my last ECG the number had gone back up, I did when I called the heart dr for something else the other day.  Now my heart dr wants to see me, shouldnt they be working together cause of meds I can and cannot take.  He just let it go.  How do I know if my problem is leukemia or gleevec related or not?  Which I think mostly are but its just numbers and then I get him to explain them but I still dont understand most of the time.  Just if its good or bad?  I was told the same thing when I got diagnosed that he would be my dr from now on cause of the leukemia but thats not what is happening.  So I am confused too.

                               dee145

[rct]

Their job is to Conquer Cancer.  They do that by reading the test results and telling you you are PCRu, or MMR, or CCR, or something else that indicates that he/she has Conquered Cancer.  If the blood tests don't indicate that, they will perhaps change medications until they do Conquer Cancer.  Anything else, that would be the myriad of life altering side effects from these drugs and what they do to someone, is not in any way Conquering Cancer, so they don't want a whole lot to do with it.

The guy at the drive thru window doesn't cook the fries, he's workin the window today.  Doctors are not much different.  That's my experience.

Good luck with it.  I hope you can find a balance between the buncha doctors most CML'rs have to have on staff.

[Sloater]

I must have a nice southern doctor, he cares about my discomfort and pain no matter what the cause.  Of course if it is not his specialty, then you have to understand that he is treating cancer..  Sometimes they forget they also must treat the side effects.  I am lucky, my ONC asks me every time I go in if I am comfortable.  He prescribes treatment within reason.  I hope you find the answers you seem to be looking for without having to pay another co-pay.

Or you can wait for Obama Care, and hope you have it as good as you do now...

What is, is.

[rct]

Then you are absolutely lucky to have such a good doctor, and I'm pretty sure I can tell you with confidence that the current political climate has absolutely nothing to do with it at all.

[docfishes]

Being still new to this I think I have both a great onc and a great Pcp . I go to the ONC for my cancer and then to my PCP for anything else I think it is my PCP responsibility to keep my heart doctor and my onc in the loop of what is happeneing . As others have mentioned they each treat their own problem.

I also talk to my pharmacist about what I am  taking and anything new and he is good about going over what may not work good with each other , and to tell  which ever doctor about it

I think if you had one person treating the complete you he/she would never be completely competant (sp) in the problem you have ,I think too the person should let each of their doctors know what is going on so that you know they are up to date on any issue you have

You go to a Target,a Walmart , Kmart or any number of other stores for a pair of general purpose shoes   ,however if you need to get serious about Bull Riding ,mountain climbing or snake chasing in the everglade swamps you go to a speciality shoe store for a better made selection

Doctors are same way

Ok I am rambling will hush up

[MJL]

Marnie, I too have an eye appointment coming up. Can you advise where you found the info on Gleevec and possible  Eye issues?

Thank you, MJL.

[5tigercubs]

I am still pretty early into treatment but my onc has taken over my care pretty much completely. I thought that was the norm. I hope you find you and your docs come up with a strong and supportive line of communication for your caer that will make things as easy as possible for you.

[WoofWoof]

My Onc. is very clear that he is only concerned about the cancer. When I bring up ailments that I'm experiencing he does research to see if it's CML or Tasigna related and then will suggest I see my PCP or specialist.  Yes it is a bit unnerving but I guess I wouldn't expect my plumber to fix an electrical problem.

I want one person to be the project manager for my health and guess I have to be that person.

[VickiW]

WOW! Always knew I had a "good one" but didn't realize til now how truly blessed I am!  I never gave it a thought that an Onc would not treat the "whole" person.

I am on my 2nd PCP since dx in March of 07.  Only go to them for annual "girl" physicals, etc.  My Onc is really 90% my PCP as well.   This whole journey would be a whole bunch harder if I did not have his support!  It often takes both of us to figure out if a particular problem or reaction is drug related, the leukemia itself, something else, etc.  and even if it turns out to be the "something else" he is often the one to treat me.

I had some real allergic issues when I was on Gleevec right from the beginning (deep sinus pain, stomach, sunlight, you name it) It was my onc that figured out what was going on (my pcp at the time was clueless and sent me to the dentist) and gave me the support to deal with them.  Now that I am on Sprycel he watches me even closer.  Example;  there was a mix-up last fall and the desk forgot to enter my appointment.  When we arrived (a 2 hour drive) they were having a really hard time trying to fit me in.  I had already done the bloodwork and my CBC's came back ok and it takes a few days to get the rest back anyway so, after waiting over an hour I finally told them I was ok, just give me a call (as usual) when the QPcR results came in.  A week later I get a call from a clearly upset nurse.  My Onc would have none of it!  He wanted me in the office so he could see me!  The bloodwork was fine he just would not let me go (at that time my appts. were every 3 months) without talking with me and checking things out.  Good thing because in the interrum the neuropathy (which HE is treating me for) suddenly decided to get alot worse.

My point being, my Onc DOES care about the whole me.  Every time he asks "how is ____ doing? Are there any more problems? Are the meds working for you? Did___get better?  Anything new?  Any pain, etc.?  He was more upset than I was when Sprycel side effects got worse and I developed progressive motor neuropathy. 

I have an actual relationship with my onc and could not imagine it being any other way.  I really, honestly, am sorry for any of you who do not.

[docfishes]

That is great that you have such a good one,I can't say that mine will not do the same thing as I have had no problems other that the side affects of the Gleevec.

I do know he cares very deeply . I had the same issue.The first time I went to him I waited a couple of hours to get in ,by the time we did it was tooo late to do the BMB as it was a friday.

I instantly thought about getting another ONC. Glad I did not  He called me the following Mon not a nurse it  was him,asking me  to come back in on Tue we needed to get the BMB done,after a few minutes he says no way I can get you in see me WED and we will work you in.

I thought what the heck I will be hours getting worked in,but went anyway .45 minutes Iiwas being seen and it was ass if he had all the time in the world,at no point did Ior the wife feel I was being rushed and the way they did the BMB had to be the best and easiet in the world according to what I read as I had nothing but a local and the drove home and then ate buffet latter in day  with no problem. Went to work next day with no stari climbing restriction for one day.

He has called me aging several times not the nurse and talks to me and we go through any new problems and he tells me if he thinks they are the CML or the medication and why and what for

I will have to see whne I get anything else if he will treat it or send me to my PCP.

[SunNsand]

   There are times I do like how our healthcare has evolved. When my mother had cancer her family doctor wrote the orders for Cobalt and he was in charge of her case. She didn't live either. Now that I have cancer I do want a specialist, but I also wish he would not have such a line in the sand when it comes to other issues which may or may not be related to CML.  I have come to learn, since my first post, that when I see his NP, she has a much more open mind. Reminds me of when I was a kid, dad always said no but mom always listened

[PhilB]

Your sure it wasn't just the traditional model where Mom listens, then makes Dad say 'No'?

[SunNsand]

Ha! Now I know their secret! Lol

[Marnie]

Hi, MJL. . .

I don't have any information or statistics on eye issues related to Gleevec use.  In fact, my oncologist poo pooed my questions.  My eye doc, on the other hand, felt very strongly that my sudden onset of cataracts was directly related to medication.  I believe it, for two reasons

1)  There seem to be a LOT of people on TKIs who have developed cataracts.  There is a thread about it from 6 months or so ago. . .seems like an awful lot of folks got cataracts after starting G.  There's another woman here in Denver who was diagnosed just a couple months after me, and she too, developed them.

2)  I had an eye appt a month before being diagnosed.  No cataracts.  1 year later, after being on G for just under a year, I had cataracts.  Keep in mind that my dad had cataract surgery, so I think it would have been in my future anyway. . .but 45 years  seemed like a VERY early onset.

So. . .no scientific info for you. . .but I sure wish that everyone who has developed cataracts after starting Gleevec would report it and make sure that their docs report it to the FDA, as I think it would be worthwhile to have the FDA start tracking it.  Maybe I'm wrong. . .but it sure looks suspicious to me.  

[VickiW]

PHIL, SHAME ON YOU!!!!

You just gave away THE #1 mom secret!!!!  Wait til your mom finds out!