6 replies to this topic

[cmlLife]

Hi everyone,

    I am so confused and need some advice for my mom. She was just diagnosed a week ago. She was told that she is in accelerated phase of Ph+CML. She has been put on Sprycel. Its only been 2 days and she is saying that she cant live like this and she doesn't want to take it. She is having "waves" of headaches, nausea, vomiting, stomach knot feeling, and crying. I just don't know what to do for her. I live in another state and flew in to help her. I have been here a week but I have to go back to work tomorrow. She has been crying all day and I think its because she doesn't want me to leave. But I feel like she is trying to make me feel bad by saying "Go back home to your life, you have done all you can do for me" and "I am going to need some help and I have no-1". Although I have two sisters that live 5mns away and they don't want to help her. one says she has a 3month old to care for and she cant, the other...well my mom doesn't want her over here.

  I try to be as positive about this situation as I can. This diagnosis may not be affecting me directly (my body) but she is my mom and its affecting me indirectly. I feel over whelmed and I need a break. I plan on coming back in about 2 months. I'm worried for her because she does not tolerate being sick at all. I cant suggest anything to her without her biting my head off. I just don't know what to do to help her. Plus I feel guilty for leaving tomorrow.

Thanks for reading....

Stephanie

[CMLSurvivor]

The good news is her symptoms will deminish with time (about 3 to 4 months, depending on the person). She will still have some side effects, but they will be more tollerable. The medication is just working really hard to clear her body of the Leukemia.  The key here is for her to try and stay positive. She may need a little counceling or depression or anxiety medication to help her through the tough time of adjusting to her new normal. CML is completely controllable for most people on the medication.

If I were you, I would not feel guilty about going back home and taking a breather. You cannot help your mom if you become ill from the stress. Just let her know you love her and will be there to support her as best you can. Really she just needs a little moral support which can be accomplished over the phone.

[Trey]

The worst of the headaches and such should end fairly quickly, and she needs to work through them.  Her experience is not unusual.  Most have found that the initial awful side effects only last a week or two, and then others last for a few months, and then some remain longer term, but hopefully at lower levels.  But for now she is suffering real pain.  She will be grateful for your patience with her after this passes.  Encourage her to work through this.  It should be better soon.

[BY196]

I had really bad unrelenting headasches for the first two or three days on Sprycel and then they went away.  As of today,11 days after starting, I can say that I have very few side effects (which was not the case on Gleevec).  She may well have to adjust her idea of how she'll feel--many folks on TKIs have a fair amount of fatigue--but it's unlikely she'll feel like she does now for the long term.

Beth

[Susan61]

HI Stephanie:  The fact that she was only diagnosed a week ago says it all.  She is still adjusting to the fact that she was told she has Leukemia.  People hear that word, and think its all over.  Its a shame that your siblings cannot be more help, as you do not live close enough to get her going on what has to be done.  I do not know how old your Mom is or if she goes on the computer, but it would be good if she could get onto a computer and get to know everyone.  She would see how people are doing on all the different TKI drugs.  We have a lot of people on Sprycel, who could really guide her through everything until she understands more.  Its devastating when you first get diagnosed, but you can tell her that you have checked with us on here and that she will be fine once her body adjusts to her Sprycel.

     She will make a lot of friends in the discussions.  Sounds to me like she is lonely in itself, and then only feeling close to you who is not near for her to lean on is adding to her stress.

    I hope you can work something out for her to make her feel better.  IT will not happen overnight. We have all been there.  We have a lot of new people just diagnosed like her.  IT would be good for her to realize its not just her going through this.  We also have a lot of old timers on here like me.  I have had CML for 13 years. I would like to see you go home knowing she is going to try to help herself by joining us.

Susan

[tiouki]

Hello Stephanie, I am sad to hear this news, but several things should go better soon :

-the headaches usually are difficult for the first weeks then go away or reduce in strenght.

-about nausea, how much sprycel is she taking (100 or 140mg per day?) and at which time of the day? Either way the best is to take it at dinner to limit nausea, if she doesn't do this yet.

Good luck with that, Sprycel is a great drug when side effects will get better I hope everything will be fine.

Pierre

[Happycat]

Stephanie,

How awful for you both!  It is so hard when a loved one is in pain and you can't do anything to help.  Keep checking in on her, let her know you are there for her, even if only as a sympathetic voice on the phone. It is a real pity your siblings can't help. That must make her feel bad, too.  My dd gets migraines, and she can be very touchy, moody, even nasty when the headaches are bad. I think your mom may be going thru a simlar thing. It hard to keep your cool when you feel like someone is driving railroad spikes into your head. 

Well, you can't make it all go away, so the best you can do is to help her cope with it. I heartily second Susan's suggestion that she try logging on here. She will learn a lot, from people who know. Doctors are useful, but if they don't suffer the side effects, they don't always realize how to deal with them effectively.   Those who suffer from them figure out how best to cope.

I have a general question for tasigna and sprycel users, since the blistering headaches seem to be worse when just starting these meds. Do doctors ever try to treat these with migraine meds?  Migraine is a vascular disease, just wondering if the T and S might have a vascular impact that migraine meds would counteract.

Traci