Chronic Myelogenous Leukemia (CML) Support Group

Yes all of us in the US have to pay for our meds until we get some sort of healthcare program like you all in the UK. That would be nice not to have to worry about the costs in the long run. My insurance plan has a maximum of 1 million dollars and after that its all me. So after 16 years of the insurance paying for the medicine that is 650,000 dollars that is without a bone marrow transplant, bone marrow tests, all the appt's, and lab work or any other medicine. So count yoour blessings over there. I just take it a day at a time and maybe one day we will be as lucky as you are over there.

OMG, I can't beleive that Krissy. Nooooo they need to sort it out as they can't expect cancer patients to pay for there meds. I don't even know what Insurance is. I get treated on the NHS- National Health Service. Even if your on state benefits here they will treat you especially for cancers and other illnesses that can be life threatening. You can join medical groups like BUPA and they treat you faster but really the meds are all the same. Do you have any plans for when your insurance runs out? I think your right though taking it one day at a time, as it's so much less stressful if you do that. I take things one day at a time. I'm just sooo shocked cause I don't pay for meds, bi-op-si's and even if I need a transplant I wouldn't have to worry about costs for that either. I hope your going to be ok. Hugz Kev.

Remember that Gleevec will be off patent protection in a few years and generics will become legally available. There's already a generic being made in India which sells for less than a third of what Gleevec retails for. I would expect the cost to go down when patent protection ends. Also, I keep hoping for an actual cure!

Hi everyone,

My name is Teresa and I was diagnosed with CML two weeks ago. I am so overwhelm with everything. They have started me on Interferon shots and will soon be switching me over to Gleevec. I am a little scared. This last week I have been extremely tired and fatigue. Finding it very hard to do anything. Any information you have would be greatly appreciated. My WBC count is over 300,000 and my RBC are low, iron is extremely low and hemi is low.

I just need to know what I get to look forward to. I have been reading all of this information and like I said it is really overwhelming.

I am 29 years old been married to my best friend 3 years this September. Lost my dad 2 years this coming July to cancer. My husband and mother is now afraid they are losing me. HOwever, I keep reminded them I am a strong girl and a fighter.

Thanks for listening

Hey Tree79, I was diagnosed on dec 19th 2009, I thought they were giving me a life sentance but I soon realised the key to beating this is staying positive. I have made a great support network and because I live here in the United Kingdom have had no probs in terms of getting my meds and stuff plus they even help me with my finances as I qualified for Disability so that was plus as money is important during times like this. I have been to a Leukemia support group and met and heard stories of other CML patients. I think the meds we have now for CML are very good, I'm am on 400MG imatinib Gleevec and have my second Bi op si on wednesday this week so will find out how I'm doing then and will learn if Gleevec is working for me. My blood levels and everything soon went back to normal in a short period from when I started taking imatinib. I know the concerns and scares when your first diagnosed especially when they mention the phrase "well it's a form of cancer yes" like they did with me. But try to just continue life as normal and go to all your appointments and take your meds. Do all you can to help yourself and your cancer should respond. Wish me luch for wednesday and I'm thinking of all you guys and wish I could have you all here in the UK where I know you wouldn't have to worry about the cost of your treatments. Big Hugz Kev

Dear Tree79,

Please do not worry. CML is not like other cancers, it is controlled long-term by drug therapy. You should get on to Gleevec as soon as possible, that is the first-line drug treatment in CML and can get you into remission fast.

My husband was diagnosed with CML in Jan, 2002. His WBC was 273,000 and spleen was enlarged. Within 6 months of Gleevec treatment he was in remission and is still in remission. I know CML patients surviving 18 years with the disease, they just take a pill every day and lead normal lives.

At first, you will find the diagnosis overwhelming, we did, too. But, I have many friends who are young, they are getting married and even having babies (with strict medical monitoring). The long-term results of Gleevec show 90% survival at 5 years and doctors say that CML will be controlled long-term by drug therapy.

My husband has been working full time all these 7 years. The first year he was very fatigued but it passed. He has some Gleevec side-effects but they are manageable.

Stay positive, Tree79, once you respond well to Gleevec, you will feel much better.

Like Perry, I look forward to the day this disease is cured. Doctors have done so much research on this one cancer that I am optimistic we will see a cure in the future. Stay positive.

All the best,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
PCR negative

Thank you everyone for your kind words. I will stay open minded and stay positive and strong until the medication starts working. I am assuming the beginning is just the worst and once I get through it then it will become easier as the days go by.