12 replies to this topic

[Pdkl2311]

Can anyone give me any information on how they felt and what to expect while taking inclusig? My husband was diagnosed with cml in 2011 he has been on everything... Gleevac interferon, tasigna, sprycel, Hydroxyurea, etc. without achieving remission . He just started taking inclusig so as his 24/7 caregiver I was hoping to get some inside information I have read all the side effects and the dangers of taking it, but I do not know anyone who has personally taken it. Any information is appreciated thank you . Also the doctor had him on sprycel for nearly two years before doing a bone marrow biopsy because his blood seemed to be in remission. Is that normal? The doctor never tells us anything as to if my husband is in the blast stage or not all I know is we are waiting for a transplant .

[PJM]

I am on ponatinib after having failed both tasigna and sprycel. I too was scared to take this medicine given what I read on the internet and what my onc said about the dangerous nature of this tki. I have to say that I feel better on ponatinib than any of the other tkis I have taken. It has lowered my pcr reading although I am no where near 0. (Last pcr was 10.8 and I have another on Thursday. When I started on ponatinib, my pcr was 40% and rising. I was diagnosed with cml last April. My current dosage is 30mg daily and I started at 15mg. My doctor switched me to the higher dose because my pcr rose slightly. The side effects for me have been very low blood counts which has resulted in numerous transfusions of platelets and whole blood along with consistently low while blood counts necessitating neupogen shots. My doctor believes lowing the BCR/ABL is the most important goal at this point. I have my blood tested twice a week at present. My understanding is that ponatinib is sold only by 1 pharmacy in the US out of North Carolina. There are only 1,000 cml patients currently taking this tki so there isn't a lot of information on the internet from people taking it. Only 20 patients out of City of Hope are on it. My advice is to take the ponatinib, be mindful of the side effects, but try not to worry about them. This is a powerful tki and can be very effective for some patients.

[Pdkl2311]

Thank you for the info I think my husband pcr is 65% my worry is the doctor only wants to see him once a month but everything I read says testing of liver kidney and heart function as well as blood work is done 1-2 times a week. By day three he was drenched in sweat having arm joint stomach and jaw pain. But they don't seem worried about it his hemoglobin has been as low as a 9 and his wbc being 1 and never recieved any shots or transfusion I am just trying to see that he is receiving the right treatment. If you don't mind me asking Have you lost chromosome 17 as well? My husbands last pcr was over 5 months ago . He is 33 years old

[chriskuo]

Have you had a second opinion recently?  Is he being treated at major leukemia center?

[hannibellemo]

Someone will be along shortly who can give you more info about the chromosome 17 deletion. It sounds like your husband should be receiving better treatment, Is there somewhere you can go for a second opinion? And by that, I mean somewhere where they know something about CML, its treatment and how important it is to keep patient and family involved? If you let us know where you live we can give you some suggestions.

 

I'm sure this is worrisome to you and we don't mean to add to your burden but your husband should be followed much more closely with this disease and with the TKI he is taking. He should have a PCR every 3 months at least and it sounds like bloodwork every 2-3 days at the beginning of taking Iclusig. Let your doctor know about the side effects and make him tell you what you need to know. He works for you, not the other way around.

 

Please see what you can do to get him seen at a major cancer center where someone knows something about CML. LLS can help you find someplace, too. Give them a call today.

 

We don't talk about remission in CML, we talk about response to the medication. Although your husband reached hematological (blood counts) response at one point, nothing was said about cytogenic or molecular response and with a PCR of 65% he is not at either of those at this time. Those are the responses you want to see.

 

Please keep coming back for support, both educational and emotional! 

 

Good luck!

[Pdkl2311]

We are currently seeing a doctor at Sarah cannon research institute in Tennessee. I found it odd that the doctor did not do a marrow biopsy ekg liver function or anything but blood work for nearly two years he just kept saying your blood work is awesome see you in two months and then my husbands blood counts started to drop so the doc did a marrow biopsy and found that chromosome 17 was gone.i don't know but i will be calling around today to see what I can find we already drive 200 miles every time we go to the doctor and that's the closest actual cancer center. Thank you everyone for helping me

[Pdkl2311]

Thank you I am scared to death with the fact they are monitoring him once every four weeks that is just not setting right with me..I hope all your counts are back to normal so you can return to treatment and get as healthy as possible I'm not sure the reasoning so many people have to go through this i just pray to be lead in the right direction which lead me to this post I am so thankful for everyone on here and the info they have provided

[Trey]

Pdkl,

 

Do you know if the chromosome 17 is fully deleted or partially deleted?  The BMB report would have more specifics about this and other important issues.  If you want to post a copy of the BMB here I can read it for you. 

 

Here is how to post a photo of it:

http://community.lls...l=+post +photos

[Gail's]

My impulse is to say run as fast as you can to a 2nd opinion. Trey is very good with the BMB reports so post it for him. Your thought about more frequent monitoring is valid. You could call and ask your dr for that now while waiting to get in for a second opinion. I agree that you should call LLS and get their recommendations.

[Pdkl2311]

The chromosome 17 is completely gone... They did not give us a BMB report I have requested it but had to sign release forms for it I will post it asap thank you all

[hannibellemo]

Just so you know, you are entitled to all of those reports, at least he is and he can add your name to the list fo people entitled to his medical information. It will also allow the doctor to talk to you about his disease.

 

I'm given my reports after every visit and they are posted on-line. Just ask for them before you leave every appointment, and if they aren't ready ask for them to be faxed or e-mailed to you. 

 

Good luck!

[Pdkl2311]

I am on the list and they post all tests online except the pcr and BMB results I am not sure why but I will request them again

[annmarieparisi]

Hi Pdk,

I am fairly new to this site too.  My husband was diagnosed in March.  He is also waiting on a transplant.  He just finished his second round of chemo which the onc called maintenance chemo.  He will be needing to do this every six weeks.  He was in blast crisis at diagnosis and also has a chromosome 17 deletion along with other chromosome anomalies.  These are great people to be in touch with.  They have a lot of knowledge and experience along with plenty of empathy.  I request all of my husband's lab results each time we visit either the Leukemia clinic or the chemo clinic.  You should see a patient advocate if they do not give you the information you are requesting.  You are entitled to it.  I wish you and your husband all the best.  You both will be in my prayers.