32 replies to this topic

[quiltdiva51]

Haven't been here for a while. Dx with Ph+ CML last December. Things were going well on Tasigna until July/Aug and something went haywire. Now have
CML in blast crisis and ALL. On 3rd stay in hospital, second round of chemos. BMB from last Friday shows 3% leukemia cells. Onc is happy with the way things are going so far. If I can get in remission by Oct, I can start working with the BMT team here in our town at another facility; looking for transplant for my Christmas or New Year's present, if not sooner.

Boy, has my life changed. Thank goodness I still have a secure job and med insurance.

Even my Onc said he was totally surprised by how this went; he would not have envisioned this for my future. Gee, me neither!

Anyone else gone over the edge in just 9 months??? In general, I am doing OK. My spirits are good and I have a huge prayer chain going across the US. Sure seems to be helping. Blessings to all who share here.

[CallMeLucky]

It is good to hear from you and hear that you holding up well.  I'm sorry you had to go down this road.  I hope the best for you.  We have had a few people in your situation pop up.  There is BJ and recently 'Vitamin G'.  I know there have been some others as well but don't recall all the names off the top of my head.  I feel for all of you having to go through this additional burden.  Best of luck and I hope you feel well and recover soon.

[Susan61]

Hi:  My prayers will go out for you to get whatever you need to beat this.  Very odd that we just got all those postings from Vitamin G who is going through the same thing as you.  Like Lucky said, we do not hear of this very often.  Maybe the two of you could give each other some moral support to get through this together.

Susan

[Tedsey]

All the best to you.  May it all be smooth sailing.  May healing and good health soon be yours.  You are in my thoughts.

Tedsey

[Pin]

Hi quiltdiva, I'm sorry that this has happened for you, the whole thing is such a shock to begin with when we are diagnosed, then having to deal with this on top of the CML diagnosis must be so hard - I do hope that you can get into remission so that the transplant will be successful. I will be thinking of you, Pin xxx.

[nathaliece]

Quiltdiva,

I am so sorry that you are facing the additional diagnosis and will keep you in my prayers that your body responds quickly and effectively to the treatment.  Keep us posted and lean on us if we can be of help.

All my best,
Nat

[Shalom]

Hi,

I am in the same road then you, they told me I have ALL in a different hospital, I came for a second opinion at City of Hope at Durate California and they did a BMB yesterday they will let me know maybe today, I am scare to the chemos and treatment but if is the only thing I can do I will, how was the first chemos for you how old are you? and how long do you was on Gleevec? how do  they found that you have ALL? did you got sick? let me know please I am really scare now and at least let me know how the chemos are.

Thank you and nice meeting you.

[Happycat]

Quiltdiva, I'm so sorry to hear this.  I hope (and will pray) that you get to remission quickly, and that your BMT is successful.

The whole blast crisis thing sounds so scary, because I'm not sure how one knows there's a problem if there are no symptoms.  Most of us were probably completely surprised by our CML diagnosis, for example.  Sounds like things turned very quickly for both you and Vit G.

Anyway, I wish you the very best.

Traci

[Marnie]

Hi, Quiltdiva.  Glad that you posted to let us know what's been going on.  Pretty darned scary!!  Best of luck as you continue in your treatment.  We will all be thinking of you.  Good vibes heading your way from Colorado.

Marnie

P.S.  My grandma and my aunt (were) are the ultimate quilters.  Just reading your name brought back lots of wonderful memories of my grandma and her many quilts.

[quiltdiva51]

Dear Vit G,

I got the CML dx just before I turned 59 last November. I never had one symptom, until my regular dr. saw my WBC in a routine CBC.

Tasigna was working for me for 7 or 8 months, and then i don't know what happened, but I now have CML in blast crisis and ALL.

They do a spinal tap to check to see if ALL has gone to the brain; mine has not, but I am getting chemo there when they check anyway. You are awake for this, and it's scary, but not really, painful.

I have had one BMB, which showed still 3% leukemia after one round of chemos; dr. was not upset with that number. They put you out for BMB; good drugs, I don't remember anything, Hardly sore afterwards.

So two different weeks of different chemos now. I have not had any major side effects to speak of, except one (and some diaherra). Chemo is made up just for you, and has steroids in it. So I love steroids, do really well on them. But when the chemo ends, so do the steroids, and you crash. You are just so flipping tired you can't stay awake. I have come to learn that my body needs lots of sleep; I nap all afternoon and sleep all night. Very unusual for me.

You must approach this with a different mindset. You need these drugs. You must have them to get all the bad bugs in control. You have to have them to get in remission and then get a BMT. That is our goal. I will put up with almost anything to get in remission and get my transplant. I want my life back!!!

I hope this helps. You must have a fighting attitude. Remember, this is what happened to me at my Onc and hospital. Yours could be different. Holler if you have more questions. QuiltDiva

[Shalom]

Thank you for answer me,  I have one more question; does your WBC where up again after they diagnost you ALL?

Thank you I will take more time to talk to you more about this I really need your help, you will be in my prayers too.

God Bless you

[quiltdiva51]

Vit G

Yes, I can't tell you the numbers, but my WBC went crazy. My Onc started liquid chemo the very next day, no more pills. Write anytime.

[Shalom]

Hi my friend thank you for your answer, I am 35 years old and I have family my wife and 3 kids, my baby has 9 years old so thats the younguest one. I am stuck here at City of Hope at Duarte California they told me to get a room, I showed them some results from other hospital from a BMB they were only preliminary results, and my Dr. here at City of Hope told me to get a room because I will need chemo, then I told them some stuff that Trey explained to me and they decided to repeat the BMB, and everything stop there I been here since Thursday and they start with Sprycel 100mg, and today the Dr. told me that they are waiting for the BMB results and thats why they don't know what treatment will be done yet. Anyway my WBC are low the normal 2.8 and also RBC, platelets are very low, tomorrow I will know for sure what its my diagnostic and probably they will start with chemo tomorrow as well. Did you stay at the hospital for all the chemo? Did you lost your hair? how long is the chemo? then how long do you have to wait for the BMT?

I know  I have a lot of questions but honestly I am really confused now and worried.

God bless you and I hope you answer me soon

[quiltdiva51]

I was in the hospital a week for Round I. Went home, then to the dr the next day and passed out in his office. So he put me back in for 6 more days of just recovery and blood (4 units and one platelets). I was home for two glorious weeks and lots of sleep, at the end of which they did the BMB.

Because I was no longer anemic or neutropenic and stronger, he put me in last Monday for 5 days of Round II (different stuff). Stayed an extra day as I just wasn't up to par on Friday.

Came home Saturday and seem OK. Numbers this morning were good. Low, because you totally lose your immune system from the chemo. Neutropenic means no immune system - no fresh veggies or fruit, no yard work (which I enjoy), no chemicals on your hands, face mask in public. You cannot fight anything off that you normally would not even think about.

I have this week "off" with just CBC counts at the dr. I'm guessing another BMB sometime next week. If we can declare remission (and it is only temporary I understand), I can start working with the transplant team. But there will be more chemo before the transplant. From my excelerated dx in mid-Aug, dr was guessing transplant at the end of Dec. I'm holding out for sooner, but that was his experience. He has worked with the transplant unit here in our town, albeit at a different facility, before.

Honestly, they should give you anti-nausea drugs before the chemos. They help a lot. My hair started coming out in combfulls at almost the third week. Know it's coming, it's only hair, and shave it off as we did. Bald is in for men right now! I do have a wig and lots of cute hats.

I am so sorry to hear you are so young, and with young children. This will be a real test of patience for you all. Holler again.

[Shalom]

Hi my friend, How are you been? what news do you have for me ? I been on the chemo for 5 days already, everythign has been OK no bad symptoms yet and I hope not to get any, how do you feel?  any schedule yet for your BMT? I just started this and I don't know whats going to happend anyway I will try to post you all I have done here at City of Hope at Duarte California. Do you have a donor already? let me know whats going on with you my friend. I hope you are fine and god bless you.

Thank you for keeping me posted.

[hannibellemo]

VG,

It is not a good thing making preparations for a BMT and not know what is going on. You must make your physicians sit down and tell you what they are doing and why. If English is not your first language then the hospital will provide an interpreter for you. This is very serious business and they need to talk to you about the possible outcomes which are many and varied.

Good luck to you.

Pat

[Shalom]

Hi my friend, Ofcourse I am not doing any plans for BMT yet, I was diagnostic with Lymphoid blast crisis in CML so one time you get to a blast creisis there is only one thing to do and is chemo thats what the Dr. told me, then I don't know what is the next step for them, I believe they will find out in my next BMB and they will let me know what chances do I have and whats the next treatment, I wish I can come back to the pill but I have heard that it can work but not for too much time, so I will keep you guys posted on whats the next plan from here.

Thank you 

[Trey]

I am not able to see into the future, but I know that your next BMB will show that your entire marrow has been wiped out.  I'm sure that your Onc will be pleased with that result.

[Shalom]

I don't know what to say Trey, but I discused this with two different Dr, different hospitals and thats was the only thing to do, I don't knwo whats going on but both BMB shows the Lymphoid blast crisis, where to go who to see in this case? I already taking chemo, so I guess thats it for me. Honestly I am kind of tired of statistics, numbers, results, etc. I am just fighting here again and of course I have faith that is the most inportant thing at this moments. I wish you could be my Dr. at the moment I was passing for all this I know that you know a lot but there was no posible.

Thank you Trey.

[quiltdiva51]

Vit G

Good to hear you are not having any adverse side effects from the chemo.

Today I spent 11 hours at my hospital, giving blood twice (next time I will remind the tech to take 2 vials!), waiting for the dr office to call, and then getting 2 units of blood and one platelet. I knew yesterday I wasn't "up"  or feeling up to par, so I expected the blood, but not the time span! Illness teaches patience!!

I have a feeling I will have a bmb next week late, and hope for good results.

I have not started with the transplant center yet. Have to be in remission before that happens, hopefully in Oct. So no donor or anything yet. Too soon. And to anyone else reading, the transplant is my only option. Sounds ominous, huh?

Take care, G. Just know you will feel lousy when the chemo stops. Just sleep as much as possible. Best option. Later...