8 replies to this topic

[Susan61]

Hi:  I have posted that my  mother has just been diagnosed with CML at the age of 88.  I just went with her to the Oncologist, and she is in Chronic Stage. No enlargement of the Spleen, but she complains of horrible back pain.  She is on Hydrea, and the dose has been boosted up due to the fact that she is creating more and more platelets.  The rest of her blood work is good.  I understand the process of JAK 2, but I forgot to ask if there is anything else they do for this mutation.

     We have her in a Nursing Home due to bad heart with CHF.  Her legs must weigh about 50 lbs. and she cannot walk even with a walker.

     The doctor wanted to operate and replace her Aortic Valve, but I wonder if that would actually help the swelling enough so she could go home, or would it end her life quicker.  She also has extensive coronary artery disease.

     Gary is going for his follow-up Cystoscopy on Thursday to see if the Chemo did its job.  He dreads another biopsy if they find some new growth in the bladder.

     2014 does not seem any better so far than 2013.

Susan

[pegetha]

Hi, Susan.  I usually post on one of the MPN forums, but when I saw the title of your thread, I jumped in here.  The JAK-2 mutation is one that is usually seen in patients with polycythemia vera, myelofibrosis, or essential thrombocythemia.  The mutation was just discovered in 2005, and there is only one drug right now that specifically targets JAK-2, although other JAK-2 inhibitors are going through clinical trials.  As it happens, I'm taking that drug, ruxolitinib (trade name, Jakafi).  It was just approved two years ago, and is usually only prescribed for people with high-risk myelofibrosis.  I'm curious, is she also PH+ as well as having the JAK-2 mutation?  Sounds like a double whammy.  I'm sorry she is having to go through so much at this stage in her life.  You and your mother both will be in my thoughts and prayers.

By the way, I agree with you that 2014 isn't looking a whole lot better than 2013. 

Pegetha

[Susan61]

Hi:  Yes she is PH Positive also.  They have not said anything about putting her on an additonal drug.  I think they are trying to get the platelets to come down with the Hydrea.

Thank You for your Prayers.  Thats always the best medicine for any of us.

She has to do 2 more blood tests over the course of the next 2 weeks, and I hope to find out more.

She is just in such bad shape as it is, and I think they are just trying to keep her comfortable in my estimation.

Susan

[Trey]

It is rare to have both Ph+ and JAK2, but it can happen in isolated cases.  It is essentially two different diseases at the same time.  TKI treatment will not usually control the JAK2 issue which means her platelets will continue to be very elevated if not treated.  If she is strong enough to fight both issues along with CHF and arterial disease, that will be a judgement call for your family to make.  She may not be able to withstand both Hydrea and TKI, but she should try.  It will likely come down to some tough choices for her situation with all these issues at the same time. 

http://bloodjournal....18/12/3445.full

This will sound like a strange deja vu to you Susan, but she may want to try Interferon instead of Hydrea + TKI.

http://www.cleveland...tive-disorders/

[Susan61]

Hi Trey:  They do not want to give her a TKI because of her heart.  I remember how the Interferon kicked my behind so bad I could not function.  She is so weak, and therapy has no idea of what is actually going on with her.  They just keep concentrating on her being able to walk again.  I have a bad situation here with decisions to make.  Her Oncologist is running more tests the next two weeks, and then I guess I will learn more.

     It is my mother, but I think its time for her to go be with the Lord and have some peace.  She has gone through so many health issues in the past 10 years.

    I knew you would respond with some information.

Thank You

Susan

[hannibellemo]

Susan,

I have nothing but comfort to offer you. I pray rhat you and your family will have the strength to endure the decisions you face in the days to come.

Pat

[Susan61]

Hi Pat:

      Things are still crazy.  Now she was taken to the hospital with Respiratory Distress.  I finally was able to get up there this past Wednesday, and she bounced back.  She looked good, but very congested with the CHF.  She has a woman in the bed next to her with Pneumonia.  With the shortness of beds, they put you wherever.  Then I took Gary for his Cystoscopy on Thursday, and we got good news there.  No new Cancer Seen Since the Chemo.  He still has to go every 6 to 8 weeks to be tested.

    I am so tired, and now my back is flaring up, so I have just been sitting with a pillow and a heating pad.

   Just thought I would get on here to see if anything new was happening.

   I go this Wed for my 6 month PCR results.  It is going to be only 19 degrees, and wish I could get out of going just to get test results and a new script. 

   If anyone is in this freezing cold spell that seems to be effecting so many, please stay safe and warm.

   One of the guys at my  local gas station got frostbite, and lost one of his fingers last week  I am in New Jersey.

Susan

[hannibellemo]

Susan,

You all seem to get the weather a day or two after we do and from what I hear you are getting a heck of alot of snow to go with it! A stray cat showed up at our door this past weekend. Looked to be absolutely starving and it was obvious that her ears had frozen during the first Alberta Clipper that went through. I couldn't bring her inside because of my own cats, but I wrapped a small crate in blankets and put it on our front porch with food and water. Monday morning she was gone when I left for work so I couldn't contain her for our ACO to pick up. That evening she was back and much friendlier and talkative. The temps were supposed to drop to -15 and winds back up to 25-35 mph so I carried her to our screened-in porch which is wrapped in plastic so the wind wouldn't touch her at least and took the crate and wrapped another blanket around it, food, water, etc. The ACO picked her up yesterday and she is resting comfortably at the shelter now with plenty of food, water and warmth. Our local HSNI does the day to day operations for the shelter and they really bend over backwards to try and adopt out our shelter animals. It helps that I manage ACO and the shelter because people tend to drop animals out here all the time. I can't keep them all, but I do what I can to get them shelter.

Good news about Gary, I'm sure you're thrilled! I'm so sorry your Mom is still so sick! Thinking about you and hope you are doing what you can to take a break now and then, even if just for an hour or two.

Pat

[Susan61]

Thanks Pat:  That was great how you cared for that cat.  I would have done the same thing.  My mom is off the oxygen, and breahing on her own.  She started to walk a bit better.  Her blood work got a lot better with the increase of the Hydrea.  They moved her back to the Nursing Home for more therapy.  She has a lot of thing wrong with her, but we are praying she can go back home for whatever time she has left.

She amazes all the nurses and doctors.  They said she never lets them take her out on the stretcher to go for tests unless she has her Bible on the stretcher with her.

I just have so much to be thankful for in the middle of all this stress.  Just got my blood work back without going to see the Oncologist.  We were having a snowstorm, and I called to cancel my appointment.  I told the girl I needed the results, and that I would reschedule.  She read everything to me over the phone, and it was all pretty stable.  My PCR came back negative again with my 0.000 so I will go see her just to get a new script for my Gleevec and slips to go for my next blood work when I get around to it.  I am overdo for those Orthovisc Shots for my bad knee.  I put that off because of all the other troubles.  I better go get them,  so I can walk without pain.

Now I just had the guy here because we had no heat.  Turned out to be a bad oil pump in the furnace.  This cold weather is the worst that I have ever remembered.

Susan