34 replies to this topic

[cyd]

Hi, I was diagnosed with CML in Aug. 2011. I am currently on Sprycel. I am new here and am hoping to have ppl to talk to, as I feel VERY alone. Can't stand my Oncologist and have the....."no one knows what I am going through" mask on. Anyone out here willing to just have some conversation?? Thanks, Cyd

[CallMeLucky]

Sorry you had to come here, but you have found the right place.  You will find so many here to talk to about so many different things you will soon find you probably don't have the time to keep up.

I can tell you that it is hardest in the beginning.  Certainly it is scariest in the beginning.  I'm not sure how much you know about CML, but it is a very treatable disease and most of us will live out our natural lives with it, some of us may even be cured some day.  CML today is about learning to live with a chronic disease.  Learning about treatments, ways to deal with side effects and understanding how you are doing.  It takes a little time to get caught up, there is a lot of information, but you will get there in your time.  For now, know that you are not alone, there are many many people here who get what you are going through.  So feel free to jump in a conversation or ask questions.

Best of luck.

[CallMeLucky]

Oh yeah, and a lot of people don't like their oncologist.  There are many discussions on this.  You are going to be working with them for a while so it is good to find someone you like.  Most important is that you trust them.  I don't always like what my onc says, but I trust her 99%.  If you don't trust the doctor or think they are incompetent then you should probably seek out someone else.  If it is just that you don't like them, but you believe they are competent and genuinely care about you as a patient then you may want to work harder at the working relationship.  It is more important that you trust them than like them, but you should be able to tolerate them.

[cyd]

Thanks so much for responding to my post. I am just full of tears all the time anymore and my poor hubby...........well, I know he'll survive but, I'm not to nice lately. I am a 41 yr. old mother of 4 daughters. They are still so little and I want to make sure I am around for them. Can anyone on Sprycel tell me if they have had any hair loss or thinning?? I am shedding like a dog. My doc is a jerk. And no, I don't have any confidence in him. I see a new one soon. Hopefully she'll be better.

Cyd

[CMLSurvivor]

So glad you found your way to our little club! You will find a comforting ear here and everyone knows what you are going through, we can support you, and give you hopefully, helpful advise. I find that when I ask a question about symptoms at least one person on this site can help because they have experienced it for themselves.

People who do not have CML do not understand what you are going through and it is very hard to explain to them. I always find they really don't get it, because on the outside we look fine even good on some days, not at all what people expect to see when you tell them you have Leukemia. I think they expect you to be on deaths door, and that is not the case. We will all live to be 100 or in my case, I shoot for 85, the average of of life in my family. CML is very treatable but the side affects of the treatment suck blue donuts!!!

It is very important that you are comfortable with your Onc., as was said before me, you will likely be with your Onc for quite some time.

[CallMeLucky]

I'm 39 with two young boys.  I remember feeling sad they would grow up without me.  I don't think like that anymore.  Now I just complain about being tired sometimes, but I'm on Gleevec.  Considering changing though.  As for hair loss, some others can respond who are on Sprycel.  It is not uncommon for some hair loss on any TKI, but it is not like chemo so I would not expect you to lose your hair.  My hair thinned a little.  Most people say what they lose initially comes back.  Keep in mind you are also under a tremendous amount of stress right now and that can cause your hair to fall out too.  Sometimes it is hard to distinguish between what is treatment related and what is just a result of the whole ordeal.  We start to think every ache, cough, and bruise is CML rearing its vengeful head, but most often it is not.  So take some time to allow yourself to go through this, it is not easy, but it does get easier.  Yes your husband will survive, it is hard on the spouse in a very different way, but he should also read some stuff on here and even participate if it helps him.  We have plenty of caregivers on here as well.  They are in it too.  You are the patient so you get more leeway, but do remember it is hard on him, he is scared and stressed too.  You will be around for your kids, try not to let yourself go to the place where you think you won't too often.  No point spending valuable energy worrying about things that may never happen.

As for the doc, find one you can work with, and make sure they have a good staff as you will be working with them more than the doc.....

[cyd]

EXACTLY! No one gets it. You know, no big deal, so you have to take a pill for the rest of your life. OR.... OMG you have leukemia?? Ick, the whole mess just irritates me. I look pale and pasty lately too. My mother wants to keep my in bed, my mother in law tells me it's cheaper to be cremated. So tired of the nonsense. I feel like I have been dealing with it forever and then I realize  it has only been........3 months!!!!!

[CallMeLucky]

Tell your mother in law you will keep that in mind for her funeral!

The pasty skin is par for the course, TKI drug can impact skin.  Be careful in the sun.  Fortunately the vampire look is in now.  Go to the Twilight premiere and you'll fit right in.

In time people will see that you have not died and then you will get the "you don't look sick", "it's just like diabetes" (like diabetes is a walk in the park) comments which will piss you off.  Your mom is your mom, can't help that, no matter how old our kids get we never stop worrying about them.  Be easy on her, but also don't let her keep you in bed.  People will go off your lead once the novelty and shock wear off.

[cyd]

I feel bad for my mom right now. Between me and now my brother just deployed for Afghanistan. She is just so stressed. I keep telling her I will be fine. BUT, she notices the pale skin, and the thinning hair. I thank you so much for talking. So nice to know I am not alone!!! Will return later. Motherly duties call. Thanks for the hike in my mood! And my mother in law will need to be cremated as she won't fit into a pine box!! LOL.... I'm sorry, did I just say that out loud??

cyd

[pammartin]

Hi Cyd,

Welcome, I am a newbie here also, and I can relate to your comments.  I have begun to categorize people in two separate columns, I am a fairly private person (in reality, on here anything goes) and I tell only certain people I have CML.  Most of these people have fit into two separate categories, either I wind up consoling them because they are devastated by the word leukemia, or they run away from me as fast as their legs can take them because I represent a possible reality and they don't want to catch it!  I have quietly begun to choose which category a person will fit into before I tell them, I know sounds a bit odd, but somehow I find amusement in being correct.  I am on Sprycel and although I have a lot of natural curl, it is thin, and I lost quite a bit in the last few months.  I am not sure it is from the Sprycel or just overall poor health at the moment.  It does not grow back very quickly, I swear if I have to get a wig at some point I am going to go for the longest reddest 'do' I can find.  If my mom were alive, she would be devastated with this diagnosis, she would not listen to the word 'treatable' she would just focus on leukemia.  My mother in law told me the other day I cannot die, she just doesn't have time to take out of her busy schedule to attend a funeral.  (Funny, didn't know she would be invited).  Lucky is right, we don't always look sick, and either they can't understand how we can have this and not have one foot leaning toward the hole, or we must be over exaggerating our situation, which as we know, both are untrue.  You are expressing sympathy for your husband, see you already know he hasn't had the best of days lately (yours have been worse), at least you admit it, many people would not.  In the first six weeks I was diagnosed, (Oct 6, 2011) I swear to you if I was not yelling I was experiencing a serious crying jag of one kind or another.  I was mean hateful, and my family begged me to start back on my xanax, matter of fact, I think my husband would have shoved it down my throat, had I not started taking it again.  My oncologist is ok, but he spends every other month in Florida, not sure if I am just jealous or annoyed I only have a part time doctor.  My hematologist has great credentials, I have received input from people on here with nothing but praise for him, but I get angry when I can't get in touch with them, or information is not clear and detailed.  I am looking into changing, but insurance restrictions are making the change difficult.  My best advice for you is to let those tears flow, I swear to you they will slow down in time, and as you see results from the meds, you won't have to live week to week for some kind of results or fear of what your results are.  I hope the Sprycel is doing well for you, I had some issues with side effects when first taking it, most of them went away within the first week.  Please ask questions, vent, share a possible laugh, or just check in to let us know how you are doing, I am sorry you have to be here, but because you are, this is an awesome place/people to discover!

Pam

[Dina]

Hi Cyd,

I'm so sorry and totally understand the way you feel right now. I was diagnosed three months ago and

was scared to death. I'm the mother of two children. I'm 36 years old. But it does get better, in only few more months you will be feeling a lot better like I do now,

other things will also get better as you learn more about the disease and you will be here writing to another newly diognosed in no time.

I can't believe what your mother in law has told you. It's so sad but also very funny, funny in a way that mothers in law and daughters in law

will never get along no matter how perfect we are to their sons, they just don't like us.

Now you have another reason to fight and stay here forever.

[HPL]

Hi Cyd,

First of all, welcome to the group. In the CML community, I don't know if you can find a more supportive and informative group. You may be able to find local support groups through National CML Society, there are CML Connection groups in many states and areas.

Sorry to hear you're not having a good experience with your Oncologist, if you are in an area where you have choices, I would say it's not bad to consider changing. You are probably going to have a long relationship with them, so make sure it's someone you trust. And above all, you're not alone, so many have gone through similar issues, and you will find plenty of empathy here.

Best wishes,

Hans

Woodinville, WA

[jrsboo]

Dear Cyd,

Welcome to our group!  I was dx in Oct. 2010 and started on Sprycel.  It has taken me a year, but I am finally feeling some sort of normalcy.  Each of us is so different in that regard.  There is a ton of information available here through the archives.  If you have a question, someone has probably already talked about it, if you want more info, just ask.  Someone will respond fairly quickly.

The emotional side of this diagnosis is a roller coaster.  And I hate roller coasters.  Or any ride for that matter.  Or drama.  This was not what I expected to hear when I went for my normal annual physical.  It was all I could think about night and day for months.  I told everybody about it because I just couldn't believe it.  I spent hours and hours on this site, and others researching everything I could find.   Lately, I don't even check the site daily anymore.  It will eventually cease being the gigantic elephant on your back.

I found a phenomenal oncologist that I love to pieces.  I do recommend finding a CML specialist if one is available to you.  So much easier to ask questions and get correct answers.  For the first year I spent a great deal of time in specialists offices, trying to deal with the side effects.  I am super sensitive to drugs, and Sprycel hit me like a ton of bricks. 

I found that I lost some friends, found some new ones, and really was able to focus on the family members I did like, and didn't care so much anymore about the hateful ones.

But a lot of credit goes to my husband, who has been by my side every single moment for this.  He has come to just about every single onc appointment and most of the others as well.  I find that having a large man with military bearing looming protectively over me makes medical staff treat me like gold.  I have always thanked him and remembered that he is going through this too, his beloved wife is sick, and he cannot fix it. 

This is not to say that I did not spend a great number of hours with my face in the pillow crying my eyes out.  There was one great moment of having the last straw when the McDonald's hamburger I ordered, brought home and was treating myself to (as a reward for doing something I didn't want to) turned out to NOT have any meat on it.  I actually called the chain and yelled at the manager, then fell to the floor sobbing.  Because it was just too much to ask of me to deal with. 

Luckily things have gotten much better. 

Treat yourself with kid gloves. Allow yourself the time and energy to feel bad and to feel good. 

And ask questions.  Over and over and over, until YOU understand it, feel comfortable with the information and can make a reasonable decision based on that information.  You drive this bus.

--Caroline

"If you knew how hard it was for me to do the things I like to do, imagine how hard it is to do the things I don't want to do." -Lala (a very eloquent CML'er)

[mikefromillinois]

Hello Cyd and welcome.  We're all in the same boat here...welcome aboard!  As far as the pine box thing with the mother in law goes, perhaps another option might be a better one for her.  Over here in Illinois the economy is pretty bad.  A few cemeteries are offering "Super Saver" packages.  The way it works is the funeral director and staff take the deceased out to the grave site - stand the deceased up on his or her tippy toes, then drive them into the ground with a croquet mallet.

Speaking of weight, ahem, I've been on Sprycel for a few months and I've noticed that if I'm not careful with my salt intake I put on weight pretty quickly and easily.  Food for thought...

If you're like most of us here Cyd, in time this whole CML thing won't be as stressful for you.  Hang in there...

Mike

[SB3]

I can totally understand how you feel -- I was diagnosed two months ago and went through the the emotional roller coaster of "OMG, I have leukemia" for the first month. This discussion board got me through. Everyone here is so supportive. I'm still so new to all of this but no longer feel so alone. And hearing others' success stories gives me much hope. Definitely be kind to yourself -- the diagnosis and treatment are a lot to deal with, even if the overall outlook is so much more positive than it was 10 years ago, thanks to the TKIs. And definitely seek out an oncologist you feel comfortable with. I have had issues with my current oncologist, but thanks to the support from people here, I realized that I could make a change and I have an appointment to see a new one next week. Knowing that this medical relationship is going to be the most important one of my life helped me realize that I need to see someone who I trust and have confidence in -- there's no need to put up with someone who's a jerk or whom you can't stand.

[AliceJane]

Cyd,

Welcome. first thing don't pay any attention to me in regards to reaction to CML. I am not good at this CML thing..

2nd thing, this is a great place to be. I joined yrs ago and they put up with me coming here for lastest crisis, some of my own making ,and then disappearing till the next crisis.

I am trying to get better and I now read every post. I am not anwsering much cause I know almost nothing. Mostly I have been trying to ignor being sick. I was dxed in Spet 07 I have been on all three meds and am doing good on Tasigna, lol, I would say great but, I am sick of taking meds and I itch and it is driving me nuts today.

But great news is I am going to live and continue to be pain in the butt for yrs to come.

You found the right place. These are great people and they always help me, have never let me down. Not once.

How many places, people or things can you say that about?

alice

[Judy2]

Hi Cyd. As everyone says welcome to the club that nobody wants to join. I was dx in May and just began posting a few weeks ago. I still cry often but am feeling much better with the support of everyone on this site. I found there is only so much you can complain to your friends and family, it takes another CMLer to really understand and everyone on this site truly understands. I don't know where you live but a group of us from the Boston area are trying to set up a "face to face" support group. If you are in the area please email me privately and I can put you in touch with the person who is collecting  the names. Hang in there. You will have a long life and one of quality, that is if your mother-in-law doesn't kill you first.

Judy

[pamsouth]

Hi cyd,  I was DX in 2005 have been on Gleevec every since.  I am curious why you have been on three drugs and when you made the switch?  When did you start on Tasigna?

[Susan61]

Hi Cyd:  You came to the right place.  You will have plenty of people to chat with, and ask questions.  Sometimes just to vent.  We have a lot of new diagnosed people lately.  We also have people like me who has survived CML for 13 years, and doing just fine.

     You go through a lot of mixed emotions when your first diagnosed.  It  is so normal to feel like you do.

     Just jump in here anytime and get to know everybody.

Susan

[cyd]

SOOO many people!! AWESOME!! Thanks so much to everyone. My first visit with my Onc was, "you have the good cancer, you'll take pills and be fine". Absolutely no bed side manner. The last visit I went to, I had his practioner. When I said something about my hair, she says, " OH, is that a side effect of your meds??". And then when my husband was asking her about different cold medicines she says, "HHhhmmm, I don't know. You'll have to call the drug company to figure that one out."  So, glad these people are being paid the big buck not to know a dang thing!! So, needless to say, I am going to try a different doc in the same facility but, if it is no different I'll be movin' on.

If my hair falls completely out, how long before it starts to grow back??? Anyone??

And the nausea from Sprycel has me every evening. I hate it.