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Long Term Effects Clinics

frantik
Posts: 20
Joined: May 2002

I am a 31 year old childhood cancer survivor (Wilms tumor and lung cancer). I have had multiple late effects, for a total of 10 surgeries throughout my life. I have always had Kaiser insurance and have had what I considered "crisis management" health care.

I am now researching and learning more and am realizing there is much more knowledge and many more professionals trained in late effects.

I live in San Francisco and am just starting to look into going to a late effects clinic. I am wondering if anyone out there has been or is currently being treated/followed through a late effects clinic? What is it like? How has it helped or not helped you? Is there anything that I should know?

elizabethe
Posts: 5
Joined: Jul 2002

Hello, Im a 29y old survivor of Leukemia. I had Chemo and Cranial Radiation at age of 3. I am also just learning of research about long term effects. Ive never heard of the clinics you mention but would love to learn more. I am currently trying to get tested to see if some problems at work and emotionally can be traced back to my treatment. So, any info you might have or find would be very helpful. Thanks

dickl
Posts: 39
Joined: Jan 2002

elizabethe,
My son is 6 yrs. out of AML and a bone marrow transplant. He is now 14 yrs. old.Following treatment many neorological problems surfaced. Memory loss,learning difficulties,obsessive-compulsive behavior, epilepsy,vision problems,frequent severe migraines,and behavorial problems that included rage and use of foul language. The hem-onc docs at Children's Hospital in Cicinnati had no experience with these late effect problems and were of little help. We found a book that addressed many of these issues.It is by a nurse at the late term effects clinic at Children's Hospital of Philadelphia, her name is Wende Hobbe.If you are looking for more info contact me.I am still searching for ansewers and am happy to share info with others and let them know they are not alone in their problems.

dickl

frantik
Posts: 20
Joined: May 2002

Hi Elizabethe:

I'm happy to tell you what I have learned. First of all, Dick is absolutely right--there is a fantastic book out there you MUST read. Run, don't walk, to your computer. It may still be on sale through Amazon.com. You may know, but in case others are interested, it's called "Childhood Cancer Survivors-A Practical Guide to your Future" by Nancy Keene, Wendy Hobbie and Kathy Ruccione. It will be the most important book you own. Libaries have it I've heard, but do what you can to own it.

Since I posted, I have been to see Carolyn Russo, MD-the founder of the late effects clinic at Stanford/Lucille Packard. She is now with Kaiser, which is my insurance. She spent 2 hours with me, listening and telling me all that she knows about what I might expect in the future, how I can monitor through regular preventive tests (also found in the book) and what I can do on a daily basis for prevention (and, may I add what I don't have to do). I think it's extremely important to find a doctor that is familiar with childhood cancer survivors.

Here's a link of clinics you might want to connect with:
http://www.patientcenters.com/press/follow-up.clinics.html

It is important to learn, as I have that you/we are not alone. There are many of us and a new world of awareness will open up to you on this journey. It isn't easy facing all this stuff, but it's very, very important. I also recommend getting your medical records (a late effects clinic will need them, but you will want your own copy). Hopefully your treating institution still has them.

Please feel free to send me mail directly, as I would be happy to share more. There are other online resources, and with all due respect to this site and list, another online group that is much larger and more active and contains huge amounts of information.

Best wishes to you,
Fran

dickl
Posts: 39
Joined: Jan 2002

Fran,
We live in southern Ohio and did our bone marrow transplant at Children's in Cincy 6 years ago.My son is now 14.They have a late term effects clinic but it seems to be in name mostly,they have been of little help with my son numerous neurological issues and don't even communicate with the neurologist in the same hospital.They assure me their program is better than the one in Philly.I think they are full of you know what.It is not practical for us to do regular follow up as far away as Philly and I spoke with Wende Hobbe who said she'd be glad to serve as a consultant with the staff at Cincinnati.But they have not been open to this suggestion.We have found help with a neurologist at Wayne State in Detroit and a psychiatrist we found.My wife and I have had to form our own team and handle these very complicated problems mostly on our own.We are always looking for leads to doctors and clinics that may help.
Have you also experienced many effects from your treatments? What are they?

Dick

frantik
Posts: 20
Joined: May 2002

Hi Dick

I am sorry to hear of your troubles with the clinic you have been going to. I know what you mean about the team you and your wife formed. My parents certainly did that for me and have influenced me in adulthood on how to get things done in the health care system. And, thankfully, they are still around when I need them today. We can't always be our own best advocates, esp. when we're sick.

Yes, I have had many long term effects, I'm afraid. My situation, from what I understand, was compounded by my young age at treatment and the relatively unsophisticated treatment done in the early 70's.

When I was about 11 years old I was diagnosed with Kyphosis. I had a number of vertabrae fused. I had back surgeries in the summer when I was 12, 13 and 14. I am left with a pronounced kyphotic curvature. Fortunately, though, I experience little actual back pain.

When I was 17-19 I had 5 abdominal surgeries for adhesions and bowel obstructions. I was quite ill throughout this time and things seemed quite grim. Throughout all of this I had bits of intestine removed, my appendix removed, my stomach resectioned--it was rearranged to dump into my small intestine.

With that said, I did recover fully and am leading a very full life. I completed college and got a master's degree in 5 years following being sick. I am now living in San Francisco working, married, just bought a house. Our bodies and souls are wonderfully resilient.

A few more things over the years, I did have my gall bladder removed 6 years ago, I had a very nasty pressure sore on my back that took 2 years to heal, and still isn't totally healed, and am now having trouble with my thyroid/parathyroid. Not sure what yet, we're still testing.

This thyroid thing was only found b/c I read the book about childhood cancer survivors and have been getting all the recommended tests. I feel fine, but they found a problem (before I noticed any symptoms and hopefully before it's done any damage) b/c I am getting into a very proactive mode. I am still not sure of the problem, as I'm in the middle of getting some tests done.

I hope this doesn't make you too worried about your son. But I will tell you, if I could go back to being 14 I would want (and want my family) to do a few things differently. Particularly, I would keep my medical charts and copies of tests and EVERYTHING I could get my hands on about my treatment, and anything and everything that happened after. I would take copious notes and keep a very good file. I am doing all this now, working backward up to 30 years! You are much better positioned to do this now, and to discipline yourself and your son to do the same.

-Fran

dickl
Posts: 39
Joined: Jan 2002

Thanks Fran,glad to hear your life has some normalcy.We do have the medical history and protocol used.But unfortunately many things that have happened have been very rare complications that stump the docs,so they
often give up.We don't!My son's life is improving but as parents we worry about his future.I e-mailed you directly I think.So maybe that will explin some of what I'm talking about. Thanks again!

Dick,Sara,and Richard

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

This thread hasn't been active lately but Im just now starting my search for clinic. S if you have updated or new info feel free to post a reply!

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I live in Pennslyvania and go to the LTS Clinic at Memorial Sloan Cancer Center in NYC

join the mailg list on this site for LT Survivors, there is a lot of info shared on LTS Clinics as well as LTS issues

http://acor.org/mailing.html

J9works
Posts: 1
Joined: Sep 2010

My 7 year old granddaughter Jordyn has just been diagnosed with a Wilms tumor and it has spread to the lumph and the lungs. The tumor along with her kidney have been removed and she is currenting doing a chemo study "Window" with 2 drugs then will do regular chemo therapy along with radiation in two weeks with 5-6 other drugs. We are looking for survivors of the unfavorable type of Wilms that spread to other organs. Stage IV. Is there anyone out there? J9

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