New CML Drug .com

I've read with great interest Leah's posting " New Challenges after 5.5 years. "

Leah is taking 50mg of Sprycel daily for the last 6 months, and responds well to TKI's.

I am taking a reduced dosage of Sprycel since May 21st. 2011, and respond well also to TKI's.

Leah noted over the last month, she is " feeling increasingly numbingly fatigued, short of breath, and with a great sense of pressure on her chest." Dr. Druker had a chest x-ray done, and chest is clear, and heart and lung work was scheduled. Sprycel has a potential side effect of Pleural Effusion, and some get fluid retention around the heart. Lungs and Heart were examined with tests, and everything is normal.

Apparently Dr. Druker said this is not his first patient to develop this type of problem. Apparently Dr Druker has a game plan, and Leah is off all meds for possibly as long as a couple of months. I guess switching to Tasigna is a possibility!

I'm becoming concerned as these side effects fatigue, shortness of breath, pressure on chest, have occurred in her 6th. month of a reduced dosage of 50 mg.

I'm 73 years old, at a reduced dosage of 40mg of Sprycel daily, and I'm beginning to get symptoms comparable to Leah, thinking I was going through a phase, or just doing too much etc.

What is even such a reduced dosage of 50mg per day of Sprycel doing to Leah's body. Chest, Lungs, Heart seem to be clear of fluid, so what is happening to give these type of symptoms.

I'd love to know what Dr. Druker's game plan happens to be, and what scenerio is causing a game plan, when chest, lungs, and heart seem to be clear of problems.

Sprycel's potential related to affecting immune system, is this the key to Leah's problem?

I'd love to hear from Leah, Cheryl-Anne, Jerry, or whoever who might have some type of clue, as to what Leah's problem might be, when all tests show like myself, everything is fine!!!

Pete

Hi Pete,
I will be seeing my local onc on Wednesday and will get more details. I will certainly share them at that time.

Meanwhile, day 2 off meds and no appreciable difference in my level of fatigue yet.

Leah

Hi Pete-My name is Michael Richman and I live in Los Angeles.I am writing this email out of desperation because I don't know where to turn. My beautiful Golden Retriever was recently diagnosed with metastatic Hemangiosarcoma which is a virtual death sentence. She had half of her liver removed and spleen. Recovery was difficult and she is now on Epirubicin with no gross metastatic disease. An Academic Veterinary Oncologist in Oregon has done extensive research in mice with the same cancer using Dasatinib(Sprycel). It completely arrested tumor growth. It was tried on a dog in Oregon but the dog was filled with tumor. I have been able to get about 10 days worth of the drug and the pills are being cut to be about 25-30mg per dose. A 30 day supply I was quoted at a local pharmacy is over $10,000. If you know somebody that was in a trial or has become resistant to the drug and has some in their medicine cabinet that is not being used we would both appreciate any help you could give or suggestions. I will give you my cell phone number 310-666-9166 and my email is This e-mail address is being protected from spambots. You need JavaScript enabled to view it -thank you-Michael Richman

Michael: I personally do not have Sprycel that I'm not using, but there might be animal lover in CML land, that might have moved on from Sprycel, to another drug.

I certainly hope your Golder Retriever can be saved.

The best of luck Michael, as I had a beautiful dog by the name of Clovis, the best dog in the world, who passed from cancer at 12 years of age!

I still miss him!

Pete

Pete-Is there anybody you can direct me too?-Michael

Michael: Any left over Sprycel from a patient, might be offered to others on this site, however, the cost of this product as you know is significant. I personally would contact Bristol Meyer Squibb, who produces Sprycel. They might be interested in the possibility of using Sprycel, for the use in Animal Cancers.

Jerry Mayfield, who runs this site, might have an idea related to procuring free small does of Sprycel.

I'm sorry, Michael, that is all the help I can give. Hopefully someone else will make contact with you!!!

PETE

Hi Michael,

I read your earlier post and this morning I contacted the only patient I know that had some Sprycel left over after she became resistant. She has already given it to another owner of a Golden Retriever with cancer.

I will continue to be looking for a source for you. I am also a dog lover and I know exactly how you feel.

All the best to you both,
Jerry

Dear Michael,

While this may be difficult to hear, what you are doing to your dog is unfair. It may be illegal, but we don't have to go there. Dogs are not humans, they cannot effectively express their wishes and they are unable to tell you how they are feeling. These drugs come with very serious side effects, some of which are life threatening and can cause pain and discomfort. For a human, we endure because we understand what we are trying to accomplish. For an animal, I think it is cruel to put them through this experience. You have no idea how these drugs will affect your dog and you have no idea of the potential pain and suffering you will be putting this animal through. I'm sure you are doing this with the best of intentions, but what you are doing is for you, not for the dog. If you truly care for this animal, you will care for it the way it deserves, with kindness, compassion, and bravery. That is what the dog expects from you and you need to step up and do it, no matter how much it pains you. Your dog is counting on you to do the right thing. Get it some palliative care and when the time comes, end its suffering in a peaceful and painless way. I hope you will reconsider your current plan and not make your dog's final days a science experiment.

Peace......

Gary-I appreciate your thoughts. As a matter of fact, my father has multiple myeloma and has been on constant chemo for 5 years so I understand what you are saying. The problem is she is not suffering but these tumors come back rapidly and if I can buy her some quality time I certainly would like too. I am in healthcare myself but have the same problems with medications as everybody else. The only other dog that was put on Sprycel was the dog of a vet and she got the meds from patients that had become resistant after writing to them. I certainly am not asking for a person to give up their medicine but if my dog can have some good quality time that is my goal-Be well-Michael

HeY Jerry-it is such a common tumor in Goldens and unfortunately is fatal and they usually die from bleeding. At this point she is tumor free but I don't know for how long. I certainly am not asking anyone to give up medicines but as an animal lover like yourself they are part of the family. I owe it to her to try and continue to give her a good quality of life. If you hear of anyone having some extra please let me know-I hope you are well-thank you for your time-Michael

Thank you Pete

Michael: Your certainly welcome!

I read your answer to Gary's remarks and you have made it very clear, that you understand what he has said to you!

I truly understand, wanting your beautiful golden retriever to live as long as possible, enjoying a good quality of life!

My dog Clovis that I had or 12 years, was only a mixed breed, but he had the most loving personality of any dog I have ever known!

I spent thousands of dollars to try and save him, but one day as Becky, Dana and myself, were sitting on the deck, and we looked at Clovis, who had lost weight, and was struggling to walk up the stairs, Becky looked at me, and I her, and we both said " it was time. "

Gary, the unconditional love of a dog, the greatest experience of my life, makes it so hard to say " it's time " but your love for this animal will not let it suffer.

When the veterinarian gave my beloved Clovis the first shot, and left us alone with him, we shooted out his name, and professed our love for him, unashamed.

I later placed his lifeless body into a casket that I had made for him, as we placed his special toys next to him, closed the lid, and placed him in his freshly dug grave site in my backyard. We all gave a short eulogy, and shoveled God's earth upon his casket, and again cried uncontrollably, feeling no shame!!

I often stand beside his grave site marker, and think of the wonderful love that this mixed breed Clovis brought to my family! No greater love, could anyone feel, but for the love of this precious friend!

Michael, I know you love your Golden Retriever with all your heart, you are very blessed, by being able to enjoy, one of the greatest experiences God could ever give us!

Pete

I do admire your dedication. I just hope you will keep in mind the unknown with the drug, it may not be pleasant for the dog. I kept one dog going for a coupe of years with diabetes and insulin shots and another dog with pulmonary fibrosis. My guide was always if the dog was in pain. When it became clear they were too sick, we let them go. Had to put down the Husky with diabetes, that was hard. The Westie with PF passed in the night. She started to have breathing difficulty and I knew it was her time. My wife wanted me to drive her to the animal hospital in the middle of the night, but I knew she had fought long enough. I told my wife I was not going to let her die scared and alone in a cage in the back of the car while racing to the animal hospital an hour away on a cold winter night. I wanted her to die at home surrounded by the people who loved her. I propped her up on a feather bed, covered her with some blankets and laid on the floor next to her through the night, softly petting her. Her breathing relaxed and slowed down over the course of an hour or two and she quietly slipped away. I buried her the next morning. It's hard to let them go, we love them so much. I don't regret my decision, even if I had made it to the hospital and she survived, it was only a short matter of time before she would go. I just made my peace with it.
I hope you get to enjoy some more time with you friend. Best of luck.....

Hey Pete,

I do not have any specific advice to give Leah, that is why I didn't chime in, I can't wait to hear what Dr. D. might have as a backup plan.

Here in Montreal we have a few patients that are on a low dose of 20mg once daily and even one patient who is on 20mg once daily every other day. These patients are being monitored very closely - once monthly PCR. They have been monitored for quite a few years now, so this data is pretty exciting actually, although it is only a small number of patients.

So, it just might be that an even lower dose, with close monitoring is an option rather than having to switch meds and not know the new devil you could be facing.

Another option for a patient that is PCRU or CMR on one drug might be the reduced dosage of Tasigna, but this is up to the decision of the Doctor in discussion with the patient. Not every one benefits from reduced dosing, and there certainly isn't enough data out there to take it "main stream".


On the dog situation - Michael know that you have my prayers. We have a wonderful poodle whose name is Napoleon Bonaparte, he is quite old and we can see that he is no longer enjoying life, we are facing difficult times. He has been my "silent" partner for over 15 years and my personal teddy bear when times were tough. During the first few months of diagnosis he must have sensed something was up as he stayed close to me. When I would touch my hand to my heart he would come to me and give me a hug, as best as he could. He can't see my hand touch my heart anymore but I sense he feels me crying - it is killing me that I am loosing my little furry friend. But to be alive one truly has to feel happiness, love and the sadness of such a great loss. These are dues we pay to be alive and I am glad to pay them...

So, I saw my local onc today, and don't have a whole lot new to add.

My doctor told me he spoke to Dr Druker for a half an hour. Dr D told him that he has had other cases like mine. all on Sprycel, where the patient, for no clear physiological reason, develops a severe intolerance to the drug.

I am to be off drug for 4-6 weeks ("until I feel better"). How long does that take? It takes at least five days (!) to be considered having the drug "out of my system". After that "it depends" but, the longer one has been feeling unwell, the longer it takes to resolve.

Since there is no way to measure the effect of Sprycel on me (because all the tests come back normal), and they don't want to wait until I am once again feeling awful, there will be no additional trial on Sprycel.

It sounded like Dr D has not made a final decision as to what I do next. It is possible that there is another trial he can put me on. I am assuming that I will be going on Tasigna, hopefully at the lowest possible dose.

I will keep y'all posted. Meanwhile, I have lost another 2 lbs of fluid from somewhere...

Leah

Thanks Leah for the information!

Boy I must say, I didn't expect, that you would be just told that you have built an ntolerance to Sprycel.

Cheryl-Anne will certainly be interested in this!

I wonder of Sprycel, due to its known ability to affect the immune system, because you seem to tolerate TKI's very well, related to the good numbers in your PCR tests.

I also react well to TKI's as far as molecular test numbers being 5.10 Log Reduction in May 2011. I hope my slow increase of side effects, doesn't mean I may be heading for the same problem.

I'm sorry in the near future, you'll have to begin a new program with a new TKI.

I'm sure this must be a real bummer, as you were down to 50 mg per day of Sprycel, that initially must have given you few side effects.

Cheryl-Anne stated a few on trials are down to 20mg of Sprycel per day, and one trial members in on 20mg of Sprycel every two days.

I certainly hope they will investigate, what happens to the body, to suddenly find Sprycel intolerable.

Chin-up Leah!

Pete

Hi Leah, Peter,

I (have) had a similar situation. I developed a PE last May and had to suspend use of my 100 mg/d dose of sprycel for a month. The lung specialist wanted me to stop taking it for good but we all know that's not possible! Har! So, after a month I went back on a reduced dose of 70 mg/d. The side effects were greatly reduced as you might expect. After hearing the news posted from Canadian Health about the deaths due to heart related blood pressure issues, I asked my onc to lower my dose to 50 mg/d and get me in for an echocardiogram. I'm now doing 50 mg/d and am scheduled to go in a couple weeks for the test. Hopefully, they'll find nothing out of sorts and that I can continue with sprycel. I was not looking forward to the complex dosing regime on tasigna but hey, if that's my only choice, it sure beats worm farming! What I'm really hoping for is that the trials for bosutinib to finish and for that drug to be approved for general use. I hear it has the least number of side effects of them all? How do you like it Jerry? Is it working well for you? Anyhow, Leah, hope you get well soon and can figure out something that will work for you. It just seems like people who have fluid retention issues also have problems with more side effects and sprycel. My 2 cents worth...
TracyD

Hi Tracy,
Sorry to hear about your trouble. Actually, according to all the tests, I am not retaining fluid (at least not that can be detected by the tests).
I am currently on break from meds - the situation improved quite dramatically after the first week, though I am still (at 17 off) getting heaviness in my chest if I over do (harder to figure out my energy management just now). I am noticing many changes off medication -in particular an improvement in mood and memory (in addition to the relief from the chest stuff).

I have not decided what to do next yet. I am seriously considering asking to stay off drugs until/if there is a change in my PCR. I have been very low and very stable for 4 years.

If/when I go back on drug I am thinking that I have nothing to lose by trying Sprycel again. Sometimes side effects just go away after a break. If I have really been sensitized, I imagine I will find out pretty quick (NOTHINg helped me feel better on Gleevec!)

Leah

I have been absent from the group since it has been revamped but this caught my attention today. Leah, I have these same problems. I have not been able to see Dr. Talpaz the past few years but my local oncologist tests my PCR every 3 months for me. I am on 50 mg. Sprycel and often have to take a day or two off because of the overwhelming fatigue and crummy feeling. I even feel it effects my mind! It has been almost 14 years so I don't want to give up now or screw things up!! Just letting you know there are others......my best to you all!!

Dianne,
See my newer post re "Made My Choice".

Dr Druker has said that if you have a good response, you will most likely have a good response again. I have been drug free for 19 days (do I get a 20 day chip LOL????) and each day i feel a little bit better/different.

You can change to Tasgina, or try a break off and see if you remain stable.
You have choices other than debilitating fatigue!

leah