16 replies to this topic

[bayclub]

Although it has been 2 years since my diagnosis, whenever I see my doctor, I find that at times I may need some words of encouragement.  I've been told that most CML patients just take the meds and go on with their lives.  That being said, sometimes it's more than medical needs, and for that reason, I've stated to the doctor that there should be more interaction between patients with CML.  I have read that a percentage of patients with CML, do not take their meds, ie., financial, forgetfulness, etc.  That's why it's important for the doctor to go beyond the usual questions.  Any thoughts?

[LivingWellWithCML]

I am treated at a university cancer center that has an integrated wellness program with additional staff that specialize in things like psychology, nutrition, etc.  my doc is about the biology and science aspects and is pretty cut and dry (but does take my questions, etc.).  But he did refer me to their wellness team a while ago and I found it helpful when I was still in my first year of treatment and trying to get comfortable living my life again and putting CML to the side.  Maybe an option like that is available?

[mariebow]

bayclub, it would be great for me if I can personally interact with other CML people, I personally do not know anyone who has CML, except for people here that basically I can not see their faces.  I think  meeting  another person with leukemia would encourage all of us, and help cope with dealing with issues up close and personal.  I have wanted to get in a CML group, but has not as of yet.   I do not think Doctors have the time to go the extra mile other than keeping our CML in check or monitored.  Just my 2 cents.

[dj_bolete]

Thoughts on support for patients?  Oh yes.

Being proactive to get the support needed it vital, imho.  Some what like Dan, I was very fortunate to live in a community that has an active support group.  Ours is called Cancer Connection. Additionally, evaluating ones needs is vital, be they medical or well being issues.  Having a therapist is helpful.  Many people seem to shy away from talking to a professional be they a shrink or a social psychologist.  Fortunately, my town had a wide range of therapist with a 'meet & greet' policy; that being  15 min. appointments available to 'meet' the professional to chat, no fees charged, in order to locate one with whom felt comfortable. So many issues arise  with a critical dx  such as a blood cancer.

Of course, the disease specific message boards were a godsend.  I formed some very close bonds with virtual friends who've supported each other before, during, and after treatment.

As for docs 'going beyond the usual questions', well, that's a crap shoot.  Some are good, some are not so good. Some focus on the science only, others look at a bigger picture. 

If this is a question of your doc not meeting your needs perhaps it's time to shop around?  I KNOW how hard that can be.

There's my nickle   hope some of it helped.  dj

[hannibellemo]

Hi, all,

This made me think of an earlier post on the same subject. I was much younger (in CML years) then!

http://community.lls...age/80270#80270

I still feel the same way, this discussion board covers all the needs I may have for a support group and I still think of all of you as my BIFs!

Pat

[Susan61]

HI Pat:  Hope your doing good.  I agree with what you said.  The only reason I go to my doctor is to get my prescription for myGleevec, and to get my slip to go to the lab for my blood work.  I actually have no reason to even see her,unless I have some changes that need to be addressed.

      My doctor is so busy.  They are doing Chemo there etc.  I walk in and say the same thing every visit, she asks the same questions and I pay my $30.00 co-pay for nothing as far as I am concerned.  Her practice is too big for her to handle, and I have to keep showing her mistakes she makes on my scripts and blood work slips.  I am constantly correcting her on things.

    I get all the support and up to date information right here.  I always get the answers I am seeking, and  the advice is right on target to help me.  Maybe we do not see each other, but its amazing at how close we have all become.  Caring for one another, and always ready to help each other out.

Susan

[ChrisC]

Nicely said, Susan!

[hannibellemo]

Hi, Susan,

I agree with Chris - you always have the right words!

I'm doing fine, thanks for asking. I hope things are looking up for you and your DH!

I was thinking about you this morning. I remember you saying you were dxed around Christmas of 1998. I was dxed around Christmas of 2008 (12/12/08 but who keeps track down to the minute)! So, when you are celebrating your 20th year of CML survival, I will be celebrating my 10th and so on and so on! (Hmm, when I put it down in words in doesn't look so amazing,but it was when I first thought of it)

Hope you have a great day!

Pat

[bayclub]

Hi Again, I soooo agree with you. Although we're considered very fortunate that we have meds that keep this particular disease controlled, it would be helpful to speak with other CML patients.  Sometimes I just want to have some assurance that the CML meds are working.  Whenever I go to my oncologist, my b/p rises until I receive the lab results from that day!  I have now experienced sun damage and although I have been exposed to the sun, my thoughts are that it may be linked to the CML????  There should also be a"wellness group" that encourages all patients to explore other means of keeping our bodies "healthy". Any thoughts? 

[Susan61]

Hi Pat:  I am sure I will die from something else besides CML.  We are exactly 10 years apart.  I was diagnosed on

12/12/98.  I cannot remember yesterday's date,but that date will always stick out in my mind.

     Things are always hectic for me, plus taking care of my husband and his health issues.  I just take one day at at time, and hope the next one is better.

Take Care

Susan

[Susan61]

HI Chris:  Hope your doing good too.  I just tell the truth, and tell it like it is LOL

Susan

[hannibellemo]

Hi, Bayclub!

I know there are groups in larger cities who may get together occasionally. You can search on this website to see if there are any in your area. Also, there are lots of CML groups on facebook, but I don't really care for the venue. There doesn't seem to be much in depth discussion and, quite honestly, from many of the posts I've read, the posters don't seem to be very well informed about their disease. So I would take what many of them say with a grain of salt.

If there isn't a group in your area, maybe you could start one. I just can't relate, and I would feel quilty, attending an all cancer support group. I can just hear the conversation now:

OCP: "You mean you just take one pill a day? One pill at half the normal starting dosage? You get to keep your hair and eyebrows? And, you're complaining about a little bone pain, diarhhea, whatever?!?!"

Not that I think anyone would be rude enough to say that, but I feel guilty enough to believe they would be thinking it!

Our TKIs can affect the texture of our skin and I definitely think that it can prematurely age it,  but that doesn't mean your damage wasn't just caused by the sun.

Everyone feels the same way as you about tests, that will probably never go away, but it will get better. Just keep coming here and asking questions when you're concerned, celebrate the good moments with us and whine, bitch and complain to us about the bad moments. We absolutely understand everything, even things that those who love you the best can never understand.

I honestly can't think of anything you've brought up that hasn't been brought up on this discussion board, but I understand you may just have a need to be around other people with the same issues. So go for it, start your own group, it just takes one more person and maybe a kitchen table.

Good luck!

Pat

[Marathon]

Hi Everybody

I do not participate regularly but read every single post that appears here.

I am husband of a CML patient and we find our comfort here.

Doctors....... could improve a lot when interacting with patients. Out of 10, 1 is good with that.

The information we want on CML we find it here.  To be staright: after what we have found here I doubt we would do any move before counting first with the opinion of people here.

Thanks for being there,. Never said enough times.

M

[hannibellemo]

Marathon,

I hope your wife is well! Doctors theoretically know about our disease (usually), but we are living it. We have the side effects, worries and, yes, joys and I'm glad you can both find comfort here.

Pat

[Marathon]

Thanks Pat.

Wife doing well. Gleevec 400 mg. since dx not yet 2 years ago. As we would say in business...... KPIs in the right direction. So far so good.

I have the feeling that some people here know more than doctors. CML as many other things is about having feedback from as many people as possible.

As said, we would not make any move without first getting opinion from people here.

Hope you are all doing great.

M

[Melanie]

I've seen several different specialist for CML and I've been fortunate that they have all been very patient and understanding in their "clinical" way.  Interesting enough, I actually ran into a distant cousin that I had lost contact with at the Oncologist's office and guess what she had...CML.  We had quite the reunion and discussion and it was nice to actually speak to someone in person who also has this disease. She's had CML for 8 years and is MMR. On Gleevec, which she says still gets her down sometimes, but she has two teenagers to support and tries to forget about CML. We still touch base every once in while and it's nice to have that. Also, the lady that has done my hair for the last 25 years, son in law came down with CML around Christmas last year, so I was able to offer encouragement to that family.  He's now in remission on Tasigna and doing well. For such a "rare" type of leukemia, it amazes me how small my world was.

Prior to these encounters, I had no contact with anyone who had CML, outside this board and you can feel very alone. This board was and is a wonderful companion, full of useful information, companionship, and compassion. I suggested this board as a support for those I've encountered and they, too, feel its been a good friend.  It's always here, always helpful and educational, positive and always encouraging...I feel very blessed to have it. Thank you to all the contributors.

[chriskuo]

My experience is that it is the specialty pharmacy and drug company are the ones that follow up to make sure you are taking your meds.  After all, it is in their financial self-interest to make sure that you are taking your pill every day.  I get a call from a nurse related to the health plan almost every month, checking on how I am doing, and if I need any questions answered, but I'm sure the main motivation is to make sure the prescriptions keep on coming.