55 replies to this topic

[Trey]

Here is a more complete list of Interferon side effects from the link below.  About 20% cannot handle taking it at all.  Many of the rest feel continually ill.  Not trying to say anything except that someone should be prepared to face a rough time with it if considering it as an option during pregnancy:

Side effects of Interferon occur in 90%, require dose reduction in 50% and cessation of treatment in 20%. They include:

• Fever
• Anorexia
• Postnasal drip
• Fatigue
• Depression
• Weight loss
• Peripheral neuropathy

http://www.patient.co.uk/doctor/Chronic-Myeloid-Leukaemia-%28CML%29.htm

[svoisen]

Wow, thanks Trey. That is an awesome collection of resources.

I was on Gleevec for about 6.5 years and did very well for a long time - well enough to do a marathon and several centuries with Team in Training. I had really good tolerance of Gleevec but I switched to Sprycel last year (an attempt to get to PCRU) first at 140mg and then the doc upped it to 170mg. Now I'm dealing with pleural effusion as of 2 months ago. It's a bit annoying, but not terribly noticeable. Still, I'd rather not have it at all and PCRU doesn't seem to be worth the reduction in quality of life.

This is a great wealth of info to bring with me on my next doc visit, as I predict he'll likely want to switch me yet again to Tasigna.  Think I'd rather do a reduced dose of the Sprycel than deal with another unknown drug response.

[Trey]

Don't forget that you can always go back to Gleevec if it was working.  The Sprycel may have jump started a quicker response, but the Gleevec could continue the response as long as it was working previously.

[svoisen]

Good to know. I wasn't sure if I could go back but that's a good fall-back plan if necessary.

[Trey]

Some folks are just changing over to Sprycel or Tasigna, so here is a previous discussion that may help.

[deb57]

All:

I recently changed from Gleevec to Sprycel after 2 1/2 years and an exceptionally fast molecular remission. Great response but the side effects of Gleevec were killing me, I felt as though I spent my entire day trying to make myself feel better, and I spent huge sums out of pocket in alternative therapies to counter the side effects. Nothing worked. I've been on Sprycel for 2 months and I feel like I have my life back. I have aches in my legs and I'm still anemic, but these are NOTHING compared to before. The latest article on Sprycel vs. Gleevec is telling and positive: http://www.reuters.c...E6541WN20100605

Good luck everyone,

Deb

[Marnie]

Trey. . .I thought that I had read this earlier in my diagnosis, but I had not.  This is a great source of information.  Thanks for putting it together.

Marnie

[Trey]

Glad it helped.  I just did a few updates to the original posting to bring it up to date regrading drug approvals and such.

[random]

Please CMLs post more info about the side effects and health evolution.

Thank you!

[random]

What is the life expectacy for both Sprycel and Tasigna please?

[CallMeLucky]

I don't believe you can really assess an expectancy based on the drug.  They all work a little different, one works better for some and another works better for others.  In general CML is seen as a chronic disease for most people, not a terminal one.  There are various risk factors such as phase you are in when diagnosed and how well you respond to treatment.  In best case scenario if you are diagnosed in chronic phase and respond well to treatment, you are likely to achieve a "normal" life span.

Everyone's journey will be different.

[random]

CallMeLucky I do agree with you, but they must  have done studies before launching Sprycell or Tasigna, am I right?

For Gleveec they told the life expectacy would be for about 30 years, for example.

[srt]

My understanding is that those of us taking these meds are the trials.

I began on gleevec but 4 months after f&d approval, sprycel 2 months, and tasigna 4 months after it's approval when sprycell sent my counts plummeting and resulted in transfusions (over a year out from py previous).

I'm a test (or guinea pig as my doc confirmed) they and drug research docs watch me closely as there are only a few following my course of treatment. My treatment became a clinical trial after my ordeal.

I also understand other drugs have been worked on and may now be available should my numbers wane.

Regardless, I'm 4 years out from diagnosis and remission, have decent counts and no gvh because of the auto transplant + kinase inhibitors I endure because no match was available for my high risk pre B all +ph.

Every day is a gift I am very thankful of.

[CallMeLucky]

I recently went to a CML function where Dr. Michael Mauro was speaking (Dr. Mauro works with Dr. Druker).  Dr. Druker was the one who has said "we now estimate a person could live 30 years with CML".  I specifically asked Dr. Mauro "why 30 years?  What happens at 30 years?"  As someone who is 38 years old, I would be thrilled to get another 30 years considering my circumstances, but if I make it 30 years and I am basically in a drug induced remission, why should there be any reason to expect that I couldn't live longer?  Dr. Mauro smiled and basically said obviously there was nothing specific  about 30 years.  He said that based on their experience with CML and the legth of time TKI drugs have been around in combination with older treatments like interferon, there were a few patients who were hovering around that time frame and it was simply an estimate based on where things are today.  You have to remember that Gleevec has only been around for about 13 years, Tasigna and Sprycel even less.  So the 30 year number is an estimate and a loose one at that.  The studies have shown so far that most people can halt the progression of the disease with the drug and not relapse.  If you do not relapse then there is no reason you should die from CML.  It does not appear that the drugs themselves cause secondary health issues (side effects not withstanding).  So if you are otherwise healthy and responding well to therapy, then your life expectancy should be "normal".  No one could have told me I would live for another 30 years before I had CML, they certainly can't tell me I will live for another 30 years with CML.  When I was first diagnosed I heard something that stuck with me, "you will most likely die with CML, but not from it".  I'm willing to accept that.

Best of luck

[grannyd]

Hi Lucky, thanks for the report!!! Sounds great to me, I'll take 30 more years!!! I have been on Tasigna since Feb. 1st, diagnosed Jan.10th but had to fight insurance, you know, they aren't going to agree anything till the Dr. actually gets involved. Anyway, had my first 3 month PCR, still waiting for report, but Dr. said I am CHR which really made me happy.  The only side effect from Tasigna has been tiredness, and for that I am Blessed!! I go to my onc tomorrow, hope to find out more from my test at Cleveland Clinic. That is where I go for PCR, otherwise, my regular onc is only 10 minutes away. So happy you get to go to seminars, bring back so much info. Keep passing it on. Just starting to comprehend some of this, I guess it took awhile for everything to sink in about just having it, let alone trying to learn how to LIVE with it!! Thanks again, prayers to all, grannyd

[Trey]

The three drugs together were used to develop the 30 year estimate / guesstimate.

[hannibellemo]

Hmm, so does that mean, Trey,  they are anticipating that some/most will eventually develop a resistance/intolerance to all the drugs? I've always thought of the 30 years as a good thing (not for me, 90 does not sound all that great to me) but for the younger people.

Pat

[Trey]

No, it means that the drugs will "salvage" most patients IF they need to change to the second line drugs.  If only Gleevec existed, then the 30 years would be too optimistic.

[hannibellemo]

Got it, thanks.

[random]

Trey,

Any idea if these drugs can be rotated? I mean, start with Gleevec, test to see if Sprycell is better, and if it's not, switch again to Gleveec? And, the same thing for Tasigna/Gleevec/Sprycell?