18 replies to this topic

[Brerose]

Hello all,

This is my first post, I was officially diagnosed with CML on July 13th, 2012....Friday the 13th to be specific. Appropriate right? I had been feeling fine, a little tired maybe but I work full time and commute so I figured that just meant that I was human - not sick. I donated platelets in June and received a call from the President and CEO of the local blood center 2 days later saying that I needed to go see my primary for another blood test because my WBC was at 32,000. I saw a hematologist/oncologist after that where I was told that it looked like I have CML. After my initial diagnosis I moved over to SCCA for treatment and have been really happy there, the doctors and nurses have been wonderful. My BMB in early August showed that I have a 3 way translocation (3;9;22) and I am still not sure what to think about that. I hear different things from different people about if/how that will effect my path with CML. Does anyone have any experience with this? I am only 28 and have not started a family yet but really want to have children. I contacted the LIVESTRONG foundation in August and applied for their assistance to do an egg harvest before I start treatment. I was approved for that and just put 15 eggs on ice last Friday. So now I am on to the last step and I am nervous. I start 600 mg of Gleevec 1 week from today. I am afraid of what it will feel like and how this will all impact my life down the road. Can anyone tell me what to expect in that first week or so? I will take my first dose at work...is that a bad idea? Should I stay home just in case?

Thank you,

Bre

[TeddyB]

Welcome Bre, and sorry you had to join our club.

Good thing you have found this forum, you will find a lot of help from the people here.

Im 37 years old, and i started out with 400mg pr day of Gleevec. The first week of treatment for me went fairly well, with some mild nausea, fatigue and a general feeling of anxiety. Everyone responds different to treatment side effect wise, some have a lot of side effects and some have only a little. If your taking the first dose at work, know that it can be a bit frightening and you might to have someone near by to step in for you just in case, as everything can be very overwhelming. As for me, the first day i had no side effects at all, but the second day i had some mild nausea, so just try and see how it goes. I would prefer to stay at home the first few days of starting treatment, but thats just me, some people dont miss a days work in regards to CML and they do just fine.

As for the 3:9:22 im afraid i dont know much about that, but im sure someone on here will.

Best wishes from Norway

[jrsboo]

Dear Brerose,

Welcome to the club no one wants to join.  I too go to SCCA, and love them all there too.  I was Dx in September of 2010 and have been on Sprycel since the beginning.  Some of us get no side effects, some get a lot and some just get a few.  Usually the first few weeks are the hardest.  Hang in there, and if you ever want to meet let me know, I come to Seattle quite frequently (I am in Tacoma) and have an appointment at SCCA on the 8th of November.

Warm Hugs,

Caroline

[CallMeLucky]

You should ask why they are starting you on 600mg Gleevec - normal dosage is 400mg

[Badger]

I agree that the starting dose is too high (normal is 400mg).  If it were me, I'd start with 200mg for 4-6 weeks, and then go to 400. When I started Gleevec at 400mg, my system was shocked and my platelets went through the floor. Note that I have nothing other than my own experience to back this up. However, don't be afraid to question your oncologist as to why he's suggesting 600.

[Trey]

During the original CML chromosome translocation, the "normal" process is that pieces of chromosomes 9 and 22 both lose a piece, and each of those two pieces attach to the wrong chromosome (the piece of 22 attaches to 9, and the piece of 9 attaches to 22 where it creates the Philadelphia Chromosome.  So it is the chromosome 22 picking up the piece of the 9 that causes CML, in your case as well as for the rest of us.  But in your case during the translocation, you had three chromosomes lose a piece at the same time (3, 9, and 22).   As discussed, the 22 picked up the piece of 9, but then the 9 likely picked up the piece of 3, and then 3 picked up the piece of 22.  Most of us have two abnormal chromosomes, but you would have three in each leukemic blood cell.  So while the Philadelphia Chromosome causes CML, the new chromosome 9 that picks up the piece of 22 in "normal" CML appears to be inert -- it does not do anything.  But when alternate translocations occur they can either be inert, or they may put two pieces of genetic material together in a way the causes some new cellular response.  That new response could be something tame, or something harmful.  The key is how the pieces break and re-attach, and which genes touch each other.  There is no real way to know what the result will be unless you know the exact breakpoints and there is also some literature about how it affected people in the past who had the exact same thing.  So the key is that time will tell.

But in this age of TKI drugs for CML, the drugs can often overcome the issues that may have occurred in the pre-TKI drug era.  We have a number of people here who have multiple translocations, and most do very well.  I am sure they want to use the 600mg instead of 400mg because of the 3-way translocation (some of the inputs provided by others above miss this point), but it is usually much better to start with either Tasigna or Sprycel than Gleevec, since these two drugs often work better than Gleevec when there are unusual translocations.  So I would suggest that you discuss using Tasigna or Sprycel instead of Gleevec with your Onc.  If it were me, I would insist on it to my Onc.

Does your BMB report say your translocation is t(3;9;22)(p21;q34;q11) ?

I do not understand the 2 month delay in starting treatment unless it was simply to harvest eggs because of concern about the 3-way translocation.  Egg harvesting is not normally done for CML cases.  Maybe they assumed the somewhat low WBC indicated you had time.  Still, seems like a long delay.

[Brerose]

Thanks for the advice! I have used up more "vacation" time lately than I would have liked so I think I will come to work and just keep a plan in place to get home if I need to!

[Brerose]

Hi Caroline,

It's great to see people on here that are local! I would love to meet up if that works for you. I work downtown so I'm here every day!

Bre

[Brerose]

Trey is right, the 600 is due to the translocation. They initially had me starting at 400 but increased it to 600 after the BMB. Hopefully they can lower me to 400 if everything stays on course. Thank you for watching out for me!

Bre

[jrsboo]

HI there, just put a private message in your inbox.  My personal email is: caroline@suissalaw.com.  Let's figure out a time and place.

Caroline

[Brerose]

Hi Trey,

Thank you so much for all of this information. I will need to look at my BMB report again to see the exact translocation details.

The choice to stick with Gleevec was made after talking to Dr. Druker and the idea that I want to have kids. Gleevec has much more history of women having babies than the other drugs. He said that it was a toss up between Gleevec and Tasigna for me but leaned toward Gleevec with my pregnancy concerns. I am not stuck on that drug and if switching makes more sense then I am not opposed to it at all.

The delay in starting treatment was due to a few things....I switched Oncs in the beginning - the first doc didn't even want to do a BMB and had absolutely no bedside manner. He also frequently answered my basic CML questions with "I don't know" and no desire to follow up with actual answers which didn't inspire much confidence on my side. The egg retrieval was not something that everyone does but since my WBC was low I wanted to take that opportunity while I could. And finally, the drug approval process with my insurance was not a fast process. After a few delays I am told it will be on my doorstep tomorrow.

Thank you again for the response, I really appreciate it.

Bre

[Tedsey]

Bre,

I totally agree with freezing eggs.  Especially because you are so young.  If a person gets a great response to the TKI drugs and gets a Major Molecular Response (low leukemic cell numbers) or, better yet, PCRU, (the leukemic cells cannot be detected on a molecular test), it is possible to go off the drug and get pregnant.   Being diagnosed at 32,000 it appears you were diagnosed fairly early.  I believe that your chance to get a very deep response is very possible, despite the extra translocation.  Like Trey said, Sprycel and Tasigna often take care of some of the less common mutations out there and some translocations.  I would also insist on either drug. 

BTW, I had a 1 year old and a 3 year old when I was diagnosed.  I know I am blessed to have 2 children.  Nevertheless, I wanted another child and was trying right before I was told I have CML.  Sadly, I had a high WBC (180,000), and did not have the chance to freeze eggs, (but with 2 kids already, it was probably looking a gift horse in the mouth).  I have been diagnosed for almost 3 years, and I have not had a major molecular response (MMR) or PCRU (no leukemic cells detected on molecular test).  There is no way I could ever go off the drug, because my response to Gleevec was poor and on Sprycel, mediocre.  Moreover, after 3 years, I am likely too old to have kids.  So, although many women are able to go off a TKI to have a baby, there are some who cannot.  Blessings to you.  I wish you a healthy future and hope this extra translocation is easily taken care of.  Moreover, in my opinion, a normal dose of Sprycel or Tasigna may be more tolerable than 600mg Gleevec.  Although Gleevec is an awesome drug, high doses of any of the TKIs can cause more intense side effects.

Take care & I wish you peace,

Tedsey   

[Brerose]

Thank you Tedsey for your response and understanding.

With the unique translocation I was worried it may take me a bit longer than some to achieve the low test results required to convince my doctors that I am ok to give pregnancy a shot. With eggs on ice, I have the option of using a gestational carrier if my timing is longer than I would like to wait to start a family.

I am concerned about the side effects with 600 mg of Gleevec but I figure that I can always switch to Tasigna or Sprycel if the side effects are too much or Gleevec is not working as well as we hoped. I just have a level of comfort in the longer history of knowledge with that drug. Maybe that's silly.

It is great that you already had two children when you were diagnosed but that feeling of having the option of having more children taken away from you is pretty terrible. I feel so lucky to have the support I have had through this process I am very grateful for the opportunities that I have been given but it still feels harsh to know you no longer have much control in some elements of your life planning. I suppose that happens to tons of people for all different reasons though. Hard way to learn to just appreciate what you have.

I appreciate your help,

Bre

[Trey]

It is odd of Dr Druker to say that Gleevec is better for those who want to become pregnant in the future than Tasigna or Sprycel.  There are mothers who have taken all of them.  None of them affect the fertility of the woman, as far as research and experience shows.  It is only that the drug makers warn they do not know if it is safe to take these drugs while pregnant, so the drugs should be avoided during pregnancy. 

I would not give Gleevec much time to show it works.  Your 3-way translocation is an unknown quantity that you should treat aggressively.  If you do not have a reasonable response at 3 - 6 months, a switch would be a very good idea. 

By the way, good that you ditched the first Onc.  You have good instincts.

[bcra19]

Bre I am a 56 year old male that was diagnosed with CML in December 2007. I started out on 400MG of Gleevec. For me my side effects seem to be more severe when I started out, especially that first week. I think a lot of it is you don't know what to expect and every little thing you attribute to the CML and the new medication. I have a great oncologist that has done a wonderful job explaining to me on what to expect and what to look for. The Gleevec is doing its job with the exception of some very annoying side effects that definitely dictate what I do on almost a daily basis. I tried to work but that only lasted eight months after I was diagnosed. It is my understanding that most patients with CML and taking Gleevec can return to normal activities fairly quickly, I hope that's your case.  For the first couple of years I was getting blood test every week and bone marrow biopsies twice a year. Now I get my blood work done about every three months and depending how they look I don't have to have a Bone Marrow Biopsy unless they come back abnormal. This December will be 5 years since I was diagnosed. About two years ago I talked to my Doctor about reducing my dose to 300MG to see if it would help minimize my side effects. She agreed since my blood work was in the normal range and it did help a little with the side effects but more importantly my blood work continues to be normal.  My doctor has suggested changing to the next generation of the drug (Sprycel) if my side effects are more than I can deal with on the Gleevec but for me as long as my blood work continues to be good I will put up with the side effects. I'm not willing to roll the dice and hope the Sprycel will work and have fewer side effects at this time. I will try that when and if the Gleevec quits doing its job. My brothers have been tested for a bone marrow match, and I have one brother that they say is a perfect match for a bone marrow transplant 10 of 10. My doctor said that a bone marrow transplant should be a last resort. I went to Stanford hospital and Dr. Benjamin who is a Bone Marrow Transplant specialist couldn't agree more. Let's hope I don't have to go down that road. I've been very blessed with a great support group through my wife, children and friends. I wish you nothing but the best and if you were going to get CML believe it or not this is a good time. They have come so far. If this happened to us in 1998 or earlier we wouldn't have had much of a chance. I'm thankful and heartbroken for those that lost the battle to CML back then that were willing to experiment with Gleevec. Keep up the good fight and keep us posted. One thing I will say is if they have you taking your Gleevec in the morning ask your doctor if you can do it at night. That will definitely help. Take your Compazine about an hour before the Gleevec and that should help as well. If the nausea gets too bad ask for Zophran it really helped when I first started. They don't like you to take too much but it helps in the beginning while your body adjusts to the new medication. Keep your chin up and good luck on your new journey.  Jim

[Brerose]

Hi Trey, I looked at my BMB report again and my translocation is (3;9;22) (p21;q11;q11.2), does that sound fairly normal despite the three way translocation?

[Brerose]

Thanks so much for your response, I appreciate your input. I'm glad to know you have a bone marrow match in your family. I hope that you will never need to take that road but it is still comforting to know you have family that can help you.

So far, day 1 has gone ok...some mild nausea, a decent headache that comes and goes and some cramping in my hands but that's about it. Hopefully it stays fairly low key but I expect day 1 to be a bit easier than day 2 will be. We will see!! 

Thanks again everyone for your input. These discussion boards are priceless!

Bre

[Susan61]

HI:  Not sure if this will post or not.  Been trying for days to get on here.  Welcome to our group.  You have already obtained lots of knowledge regarding CML and how you will be treated. I hope you get to cut back to the 400mg.

I have been on 400mg 12 years tomorrow.  I remember the day I started because it was my daughters Birthday.

I have done very well.  I have experienced the hand and foot cramps through the years, and some fatigue.  I still find  that I need to eat a decent breakfast when taking my Gleevec, or I get some stomach discomfort or nausea.

    You will find what works for you, as everyone is different in how they handle their TKI drugs.

    Just ask whatever you want anytime.  We have a great group here, and always around to listen and help.

Susan

[Trey]

That 3-way translocation is unusual.  No other mention of that particular one anywhere.  That could be in your favor, or not.  Only time will tell. 

The key is whether you respond to TKI drug therapy.  That is why you must not give Gleevec much time to show its effectiveness before switching.  The other two drugs show better effectiveness against odd translocations.  The perceived potential impact by the other drugs on reproduction does not seem to have any basis in fact.