35 replies to this topic

[Pesty]

Hi Trey, Do you think I should get myself off to the hospital before my next scheduled visit (next wed) after Randys recent post?

Randy, good luck! x

Michelle

[Trey]

Michelle,

Randy's situation is an extremely rare event.  From what you have said, simply having either petechia or a Gleevec rash is not a big concern.  You may have low platelets, which is not unusual in the first months of Gleevec treatment, but there are also other reasons they develop.  You might want to avoid sharp objects for a while.

[Trey]

Hey Randy,

Not the best news, but you have options.  Sounds like you are in good hands.

What caused the Onc to re-diagnose you as Ph+ ALL?   Do you have the e1a2 type (P190) BCR-ABL, or the regular b2a2/b3a2 (P210) BCR-ABL?  Did they find additional chromosome mutations?  Sorry that I always have questions, but maybe I can offer some other info to help you ask your Onc the right questions.  Please keep us informed of your progress.

[Randofu]

Trey,

I'm really not sure.  I've got great doctors, so I just trust them with the details.  I'm probably a little weird in that I'm more fascinated than scared by all of this stuff, so maybe I'll try to find out exactly how the diagnosis was done and what the specific results are.  It's kind of tough though, because my mom is usually around.  She's having a really tough time with it, and she breaks down whenever she doesn't understand what's happening, so the doctors need to speak at her level.  I don't mind too much, though, since it makes her feel a lot better and she needs the support more than I do. I can only imagine how she feels right now. All I really know so far is that it was a blood test that identified the blast cells, since they haven't done another BMB.

[Trey]

In case you have not seen the LLS BMT/SCT Discussion Board:

http://community.lls.org/community/bloodcancer/transplantation?view=discussions&start=0

[Pesty]

Randy, you have been in my thoughts a lot today, I hope your coping OK.  I am sending you all my positive thoughts, I know it sounds corny but I like to think that if your brain can tell your arms and legs to move, then positivity and determination of the mind can take on anything.  Keep in touch and stay strong.

xx

[BethG]

Randy,

Wow! I couldn't have seen that coming! So sorry to hear the updated diagnosis. I am glad to hear you are in great hands and I have confidence you will get through this battle too.

Good luck and hang in there. You have friends here to support you on your journey.

Hugs,

Beth

[tinac21]

Hello Randy,

How are you doing? Is the treatement going well? Its a big shocker even for me as I was unaware that CML could transform into other things. Guess I dont give CML credit enough for the power it has over us all. I am sending you my prayers and keeping you in my thoughts as you go threw the fight with ALL. Thank goodness for you sibling match, thats a wonderful thing to have and I hope the BMT is sucessful.

[Randofu]

Argh!  Why did the board let me type up an entire reply only to then tell me that I wasn't logged in. 

Oh well. Things are going very well.  My treatment seems to be working as the doctors plan, with few side effects. I'm not lacking for candy, food, or entertainment thanks to friends, family, my Wii, Netflix, and Hulu.  The only thing I wish is that my boyfriend could be around more often, but unfortunately he's stuck in College Park giving his students their final exams, and even once he does that he doesn't have a car so he can kind of only get up here based on when my other friends and family are stopping by.

Other than that, things are looking up and I'm excited to see my brother Bobby on Wednesday, since he's getting back in the US after being in Japan for several years doing missionary work.  He actually planned this four-month furlough before I was even diagnosed with CML in the first place, so things are kind of working out for us in that regard.  My other brother, Billy, is my bone marrow match, and we haven't tested Bobby yet and may not need to. I feel especially bad for my mom...  Christmas is her favorite holiday, and for the past few years she was so sad that Bobby wasn't around and that we could only see him over Skype.  She was so excited that we were all going to be together this year, but now it's just not going to happen, because my niece and nephew are too young to be allowed to visit.  So it looks like I'll be the one on Skype this year. 

I think the hardest thing for my mom, and the rest of my very religious family, is that I'm an atheist.  My mom seems to think that it means I must have given in to despair now, when really that couldn't be further from the truth.  I just feel bad that it's such a struggle for them, and I wish they shared my point of view. If I could, I'd pretend that I had converted to Christianity while in here just to make them feel better about the possibility that I might not make it through this.  There are a few problems with that.  The first is purely a logistics problem; I'm a terrible liar and I can't keep a secret --- that's pretty much the entire reason I came out to my family when I was 16 years old, since living that lie had been weighing on me very heavily.  In fact, I only waited that long because I wanted to make sure I had my driver's license before I told them (because you hear some horror stories about children being disowned).  In retrospect, I don't know what I was so worried about.  I couldn't ask for a more loving, caring, or accepting family. That being said, the other problem with faking a religious conversion is that I couldn't possibly deal with the fallout.  I plan to survive this crap, and recanting my conversion once I'm out of the woods seems too cruel to even consider.

So I'm hoping that my mom can square herself with my beliefs that the world just is the way it is, and there isn't some divine hand reaching out to decide my fate, that all of this is due to chance and not due to either a cruel deity if things end up poorly or a benevolent deity if things work out well.

Thanks for keeping up with me. I've got plenty of time to just think about my situation, so I don't mind sharing if people want to hear it.  In fact, I think I'll post this on my blog as well, because I'm guessing my friends and family will be interested in reading this stuff as well.  In case I haven't mentioned it in a while, my blog is at http://livingwithcar...el.blogspot.com ... I'd change the title now that I'm living with "Allistair" instead, but I'd prefer for people to still be able to find my blog. 

[Trey]

Randy,

Maybe starting a new posting thread to follow your progress would be useful.  The "Very Tiny Red Dots" title seems a bit underwhelming for the new situation.  But it's your choice.  We will be following with great interest and want to help however possible.

[sandimartini47]

Randy,

I have been thinking about you and wondering how you are doing.  Where are you on your treatment now?  I read on your blog about you family being there in the hospital with you on Christmas Eve; that is awesome.  You are so lucky to have such a great family.  I am sorry your mom is having such a hard time; take it from me as a mom of three, I would be the same way and she will definitely feel a lot better when you are feeling better.  My neighbor 2 doors up, has a bmt when she was 18; that was 15 years ago and she is completely cancer free and does even have to go back and get her blood checked now. She is married and living a great life.  Her brother was her donor.  One of the other neighbors and I went door to door to try to help them with the huge hospital bill and we ended up having a beef and beer and raised a lot of money for her.

Let me know how you are.  take care, sandi

[Randofu]

Sandi,

Thanks for checking in on me.  My treatment is going pretty well.  I've finished the first round of chemotherapy and my cell counts are starting to rebound, and the cancer seems to be in remission for now. If my absolute neutrophil count is above 500 tomorrow, they might actually release me from the hospital finally.  It's been a rough month.  If that were to happen, I think the plan would be for me to be home for 2-4 weeks for recovery before having the heavy chemo, radiation, and bone marrow transplant.

I'd say I'm doing well mentally, too, though others might disagree. The only part that is really difficult for me in that regard is the constant stream of visitors.  Some of the visitors are OK, but there are also a lot of people who stop by every day even though there's nothing to do other than sit around and look sad, and then there are the visitors who I can tell are only visiting because they feel obligated to visit me in case I die. I'm the kind of person who enjoys his privacy, so it's already bad enough with the nurses and the doctors constantly entering my room. Oh well.  I guess that's just something I'll have to deal with.  I think for my second stay here during the BMT process, when my immune system is totally gone, I might use that as an excuse to avoid as many visitors as possible.  I don't know if it will keep my mom from visiting every day, though, even if she knows it's better for my health.

I'm planning to propose to my boyfriend when I get out of here, basically as soon as possible. Being in here has given me time to examine my priorities from a distance, and I know that I if I die that will be my only regret, that I didn't make the effort to go somewhere else to marry him sooner.  I doubt I can leave the area any time soon, so the best I can hope for is that I can survive until March when gay marriage will be legalized in DC.  Of course, I intend to get through this and live a long and happy life, but still... The possibility that it might not happen is the thing I fear most in all of this. I don't know what I'd do without him, and I don't know what he'll do without me.

-Randy

[mamawarrior]

Randy, i occasionally peak around on other sites, but i am usually on the transplant forum, and just wanted to let you know i am sorry for what you are going through. My son had a double umbilical cord stem cell transplant for relapsed aml, 3 years ago, at the age of 20.

When the time comes or if you ever have any questions, feel free to join us on the transplant forum, we are a good bunch, with vast experience, and we'll open our arms. Wishing you the best.

[sandimartini47]

Randy,

It is good to hear from you and I am glad you are okay for now. Ya... I know what you mean about the visitors who feel like they have to visit or the people who just sit and look sad.  It is amazing how people don't know what to do.  My next door neighbor said to me, after he found out that I have leukemia--he is about 35 so he is kind of young, but even still.  He looked at me a couple of weeks later when I was out in the yard and says, "Hi Sandi, I don't know what to say to you."  I just looked at him; he said it in a perplexed way so I said, "Joe, you don't have to say anything about at all or just say, "How are you doing or " just say what you would have said before you found out and talk about the weather or something."  He is constantly asking my husband how I am doing so I think he is just concerned but people just don't know how to act.  I lost two good friends in their 30's to breast cancer and my favorite aunt to bone cancer so I have some idea of what to say and how to be when people are sick for a long period of time.  People don't know what to say or do; I guess it just comes with live experiences.

Yes, you should propose to your boyfriend; don't have any regrets.  The first thing that most of us feel when we find out we have this disease if did I do with my life what I wanted to do and how would I have changed what I did.  Let me tell you--if there was something I wanted to do, I would do it now--I mean TODAY.  Don't wait.  I am older than you so I have been evaluating my life--the good, the bad and the ugly.  I am a teacher so I would not have changed that because I loved my job but there are many things that I am proud of and some things I wish I would have acted differently. I have a wonderful husband and a family that I love very much.  My husband always wanted to travel for years and years when we were first married and I was never would go and I am sorry now for that.  I don't know now if I am well enough to travel but I am definitely going to try.  I found out recently that I am out of remission so I have two different doctors consulting to try and figure out what to do with me and once they figure it out and probably switch my chemo then I am going to see about taking a trip.  All of us on this site know that the most important thing to find in this life is love--this may sound like a cliche but once you found it,never let it go.  I am so lucky to have so many people in my life who love me and it sounds like you are also so very lucky with all of your family staying with you for Christmas Eve and that you have many, many people who love you too.

Let me know when you decide to ask him; I will be routing for you and him.  Take care and feel better each day. sandi

[Dana]

Hey gang,

I just wanted to weigh in on this issue.  I just switched to Sprycel about 5 mths ago and the tiny red dots have become large red bumps, itchy, frustrating, dry, etc.... you get it!

I agree with some of the others on this post that it is not meaning that your leukemia is getting worse, just a trade in side effects.  I have not had diarhea since starting Sprycel and after 6 straight yrs of that I was ready for a change in side effects!!  Hang in there and I think that my skin issues are starting to bother me enough to seek out a dermatologist and see if there is anything to help.  I have used every OTC creme/lotion that I can afford or care to try and need yet another Dr. on my list of professionals to weigh in on my issues!

Thank you all so much for posting and responding.

Dana

[janekaye]

Hi Dana,

Having experienced what you have after about four months on Sprycel, I did consult a dermatologist (at my oncologist's suggestion) and now use a cream called Clobex (VERY expensive like our other drugs, but fortunately covered by my insurance).  I would say it has helped, but not eliminated the problem.  My dermatologist called it eczema and said it was caused by the drug most likely since I've never really had anything like it before.  We seem to have a never-ending list of docs, don't we???!!

Best of luck,

-janekaye