James B
Posted by

James BIngham

James B
Posted by
12 May 2015

I have recently been diagnosed with CML, my WBC was 290 when I started treatment 5 weeks ago. After 1 week on chemotherapy tablets it dropped to 260. In week 2 I started on Glivec as well as the chemo tablets and after two weeks it dropped to 60. By week 4 my WBC had dropped to 5 and i was told to stop taking the chemo tablets and just take 400mg of Glivec. I have been off the chemo tablets for 5 days and just had a blood test that has my WBC at 3.1.

My questions are

1) After coming off chemo does it take a while for your WBC to settle at the right level on Glivec
2) Do you think I stayed on the chemo tablets too long, I guess I could have stopped them at WBC 10 and not 5 but if your only having blood tests once a week it's easy for them to go too low I guess

Still learning about everything so these maybe very basic questions but thanks for any help.

I would be interested in attending any awareness days if people or the charity have them.

Regards
James

Comments

13.05.2015

Hi James,

Thanks so much for getting in touch. It sounds like the initial chemo was extremely effective and has done a great job at getting your WBC back in to normal realms. We can't actually give treatment advice as we're not qualified to do so and my official advice would be to get in contact with your GP or support nurse if you have any concerns as they will be best placed to assist you.

That said, I'm a CML patient myself and whilst I went down the transplant route I know a number of patients on Gleevec who have taken some time to get settled on the right dose and get their count under complete control. If you want to talk to others in a similar position I'd thoroughly recommend the CML UK Facebook group which is run by CML patients for CML patients. They're all incredibly knowledgeable and I'm sure would be able to give you some unofficial advice to put your mind at rest. Here's the link to their page: https://www.facebook.com/groups/cmluk/

Thanks so much for getting in touch and all the best in getting to grips with your treatment. If there's anything we can do to help please don't hesitate to get in touch. How were you diagnosed by the way?

Anonymous
27.06.2015

My son has cml he was diagnosed at 2 and half years old :( he tried glivec but it didn't work he also went onto a drugs trial at the royal Marsden how ever that didn't work either so he had to have a bone marrow transplant now 7 n half n still fighting been told his never going to b in remission. Feel free to email me at hollyalfieellie@yahoo.co.uk

Anonymous
27.06.2015

Hi James

My wife has CML and we have been on this journey for 6 years now. She is in molecular remission and is very stable and leads a normal life. She has to date not found a match on the bone marrow registry. Drop me your mail and I will respond. reichesir@gmail.com

Anonymous
27.06.2015

Hello James I am in remission now for my CML..It was too quick and I was amazed of the recovery ..I was diagnosed last year only ..I advised when you take Gleevec take it wiht Soy milk and followed by coconut juice and ginger hot tea ..that way you will not be throwing up or so or feel even dizzy ...try my experience otherwise you will feel throwing up if you take it wiht food ..I wonder how much Gleevec you are taking ..mine is 400 mg. so , if yours is very low ..it's easy ..Anyway add me to your list of friends ..I would really appreciate it . walk every day for one hour and eat all vegetarian no meat ..it's good for your health ..every other day make a fruit salad fresh ..you will lose weight ..Gleevec will make you fat or gained unexpected weight..Less on rice or take brown rice ..I keep my weight normal and always ....Hope to hear from you soon! Take care ! you can add me to your facebook ..
Gemma

Anonymous
27.06.2015

Ask your doctors about Tasigna, response is faster with less side effects thn Gleevec.

Anonymous
28.06.2015

Hang in there!! My husband was diagnosed with CML at age 43. He was on Gleevac for almost 6 years. Last July (2014) he went into a clinical trial to see if his body had built up enough of an intolerance for CML-and he HAS!!!! One year later, PCR results still come back 0% detectable. In the beginning , he had some trouble adjusting to the pills , but he had very little minor side effects. He found the LLS website (leukemia and lymphoma society in the US) to be extremely helpful. Their is a forum for each and every form of blood cancer on there. You can participate in many webinars through the site as well. Go to lls.org and check it out! I wish you all the best! I run for Team In Training , the endurance training program that raises funds for blood cancer patients, research, and family support. Gleevac research was funded almost entirely by LLS in the US. Please do not despair. My husband leads a very normal life, thanks to the meds! Good luck to you.

Anonymous
28.06.2015

I would say you need to stay on Glivec awhile longer to assure you stay in good health. You doctor will be more interested in your PCR-ABL gene counts rather than the WBC, as that truly indicates whether or not you are in remission. All the 3.1 says is that your WBC is in the "normal" range, but that is not what indicates how well your treatment is going.

Anonymous
28.06.2015

James
I am sorry to hear of your CML diagnosis. I was diagnosed on December 2nd 1999. Things have changed a lot. If you have spent any time at all on Interferon, as I did, Gleevec (USA spelling) is a whole lot better. I think your questions are best answered by your physician as every patient is different. I have spoken to many CML patients and have served as a "First Connection" source for many years. First, you are doing the right thing. Learn as much as you can about CML. You need to be your own advocate and discuss your treatment options with your physician. Don't be afraid to ask questions and be involved. I had a lot of side effects when I first started Gleevec. On an empty stomach, I was nausious. The diarrhea was brutal. I did get rashes - underarms in particular. I gained a lot of weight - some of that was a good thing but gained too much. Then there was the fatigue. Since I had been on Interferon, the fatigue actually got better but I have spoke to people on higher doses of Gleevec that actually fell asleep while driving. I have also experienced muscle cramps and some really bad ones. So thats the bad news. Gleevec is a remarkable treatment and as I will explain later, looks to have some very positive side effects - they don't all have to be bad. Nausea - I take mine with a meal and always with a glass of milk. Protein seems to help.The bigger the meal, the less the nausea. Rash - I got a antiperspirant/deodorant the white messy kind that can get on your shirt if you are not careful. It worked and the underarm rashes went away. Other rashes I put a little anti fungal cream on and they go right away. Watch your sodium. Gleevec causes weight gain and I have to be very careful about sodium. Fatigue - sometimes it bothers me (I hit a wall) sometimes it doesn't. Stay active and exercise. If you take it at bedtime, you may not notice nausea or fatigue at all. Cramps - good luck. They are not as frequent as in the beginning but I can get them in strange places like my jaw and fingers. They go away.

I have been on Gleevec since May 2002 and would not change to a second or third generation TKI unless Gleevec stopped working. My BCR-ABL is undetectable! As long as it keeps working, I will probably take as long as I am alive (I am 66 right now). It comes off patent soon and will get a whole lot cheaper.

Now the good side effects. Gleevec seems to lower cholesterol. My total cholesterol runs around 125 and I eat pretty much whatever I want although fatty foods can add to the diarrhea issues. The lower cholesterol effect has been studied and may in fact lead to some new treatments. The downside is my cholesterol is actually too low which can lead to bone loss and fractures. Some reports are suggesting to take Vitamin D to help with bone health. I take 2000 IU vitamin D3 every day. Gleevec has also been shown to lower the incidence of type 1 and type 2 diabetes. Both topics are easy to research on line.

You may get a lot of advice on what to do and a lot of it may not be good advice. My background is in healthcare and pharmacy so I stick to the science. So should you take mine - learn, read, ask questions and make up your own mind.

Good luck. There are a lot of worse things we could have.

Bloodwise Ambassador Katie Ruane
30.01.2016

Hi James, I was diagnosed with CML just over 9 years ago so if you have any questions, please do contact me (I've also tried all 4 drug options available to me so I know a thing or two about them)!  In the beginning its all about learning what your body can tolerate and what happens to the blood count.  Don't question if you should have stopped taking them earlier as that's your consultants decision.  You did everything right by taking them!  I'm sure you will have regular appointments so they can monitor you and adjust the dose to suit you.  I have a very sweary and slightly whingy and informative blog (on here it's the non sweary version) or if you want the uneditied one its: recoveryfromcml.blogspot.com.  I'm also on twitter if you use it @swearing_queen

My one word of advice if it's ok for me to give it, is to be careful when on formus/google etc.  It can be a scary place with lots of upset, so make sure you look after you!  (I keep away from all of it to protect my emotional and mental health).  

I hope this helps, I would give you my email but I don't want to put in on a pulic website!  If you would like to talk etc ask the guys at Bloodwise for my email as I'm happy for them to give it to you.  Or if by chance you are treated at The Hammersmith in London let me know as that's where I go.

I hope things settle down for you soon and remember there is so much love and support out there for you when you need it,

Katie

17.03.2016

Hello James,, I just joined today after reading about you & Bloodwise on Twitter. I was dx in 1994 & was told without a BMT I had 3-5 years to live. Being a single Mom of 3 little ones. Once the team realized I had no match, he tested my young children, No match, though it would have been very unusual for a birth child to be a match. It was a bit desperate.I was started on Alpha Interferon 10 million units sub-q injections daily & 800 mg Hydroxurea. The Interferon was very rough & I was hospitalized often. They did not have a drug for CML. The drugs I was on from 1994-2001 was to try to keep it in Chronic Phase & it did just that. When STI-571 in clincal trials was given FDA approval, my Oncologist performed a Bone Marrow Biopsy to establish a baseline & I immediately began 800mg daily Gleevec. I tolerated it great. Thankfully. 12 months later he performed another bone marrow biopsy & I was in REMISSION!!! I felt so blessed. I did not just have a sore lumbar region, each day it became more difficult to just sit up straight, then I had difficulty breathing. A call to my Oncologist & a trip to the Cancer Center revealed during the biopsy it had actually fractured 2 vertebras in my spine. This was extremely painful. Back Surgery. In March 2010 my counts were horrible & I was no longer in remission. After a series of tests, my body had become tolerant to the Gleevec. Fortunately, a newer drug had been approved & I was started on it, Tasigna. Yes, there are side effects but when I think what a gift of longevity of my life and to meet & fall in love with my first grandchild. My once little ones, I was there as each received their Master Degrees & they are all  in their 20's leading healthy, productive & well adjusted lives. My Oncologist informed me in January that at this time I am the longest living CML patient in the US in Remission. I always wanted to do something special, nothing could be as special as the gift I was given. I would like to learn more about your battle with this unwelcomed  diagnosis that entered our bodies. Do you get Bone Marrow Biopsies? I'll have to become familiar with this site so I follow the rules. I have belonged to a Cancer Blog in Colorado though I am the only CML, a member that has ALL & transplanted. There is over 8,000 members, though I have made some lifelong dear friends & lost far too many. I wish you well. Looking forward to learning more about your journey. Blessings, Patty