19 replies to this topic

[shaynalee]

I just wanted to reach out and ask for some other people's personal experience with using sprycel and if it has affected your daily life and relationships.

My husband started taking 100mg the first week of April. In the last 6 months, I feel like things have completely changed. He's much more irritable, seems to lose his temper quickly, and always seems to want to argue about something. He is even questioning our life together. His memory has really suffered as a side effect, and that does contribute to arguments because he "remembers" things totally different from what actually happened or doesn't remember at all. Just looking for some opinions and answers from people actually taking it. I try my best to understand, but certain things are impossible as I am not the one dealing with the awful disease.

[soundoff]

Blaming the TKI won't help your cause.
Better to just go back and apologize and work things out. It's hard enough dealing with the cancer, but having relationship issue to top it off is just unfair.

[shaynalee]

Soundoff, it's not me who needs to apologize. Was just wondering if I should cut him some slack for his behavior because of the tki

[mlk210]

Shaynalee - For me after diagnosis, I was in fear. I wasn't in the moment with my family most of the time because my mind was still consumed with the fact I had cancer. I would question if the treatment would work for me. What if it didn't? It was constant and I couldn't find a way to turn the thoughts off. I'd go through the motions of the day, and sometimes I didn't think about it, but most times I did. Just one trigger of my husband saying something about our kids getting older and bam, my mind would drift to if I'm alive then. For some reason I thought I failed my family by getting cancer. That I was putting everyone out by my doctor appointments and the cost of the drugs. The day I got my diagnosis, I looked at my husband as we waited for the doctor to come in and I said, "I only have to live thirteen more years." He was baffled and I think irritated so I continued, "The kids will be eighteen and won't need me as much then." It never occurred to me at the time how horrible that was for him to hear. I was being so selfish and not thinking about what it is for him to go through this diagnosis as well.

 

I'm 16 months out now and my treatment is doing good. I've been fortunate to have a good response on the Sprycel so far. Now there are days I don't think about it until my phone alarm goes off to take my pill.

 

I'm not suggesting your husband gets an excuse for being that way, and I honestly don't think it's the Sprycel. But maybe you guys need to talk, go see a counselor, or someone to hear you both. It's hard for every family member when someone gets diagnosed, but sometimes the person who has the cancer can only see what they are going through.

 

I do remember around 6-9 months is when I started to turn a corner to the future more.

[Trey]

Cancer is the one disease which generates the most support groups, for good reason.  It causes more emotional harm than any other disease or group of diseases.

[shaynalee]

Mlk- thank you so much for sharing your story. I can only imagine the challenges you had to go through with having children during your diagnosis, and I am happy to hear that treatment is going well for you. Luckily, we do not have children yet. I did bring up seeing a counselor and he is unfortunately not willing at this time. I suggested the other day I do not believe he has fully dealt with the emotions of his diagnosis, and he didn't disagree. He's far too young to be dealing with it (26) and he admitted to having a feelings that he has ruined my life. I have run out of ways to tell and show him that it isn't true, and that I am just as committed now as ever. I've been positive and supportive for 6 or 7 months now, and it's just getting very tiring living with someone who is constantly irritated and everyone and everything. I find myself falling into also being irritated, which is absolutely not the answer. It seems as though he is no longer the person he was before cml, and I am just hoping he comes back soon.

[DebDoodah22]

Does he have low red cell counts now? Because anemia can present these symptoms.

However, I think you will find several article to support your husbands response to Spycel. I have had a similar experience. I have gotten some relief from a reduced dose and by treating my Vitamin D deficiency. It has made work and relationships difficult. I feel there is a direct relationship to the sprycel but do not have the support of my medical team on that conclusion. I am so sorry for the both of you- but I think this is something you can turn around.

http://jco.ascopubs..../27/2/312.short
http://ic.steadyheal...ts-of-dasatinib
http://www.ncbi.nlm....pubmed/25115782

[dede5]

Battling cancer is a very lonely existence, because you can't get out, and nobody can get in. Of course, you wouldn't want them to. It does horrible things to your psyche. I have something I've self-diagnosed as sensory processing disorder. When I say 'self-diagnosed', I had to seek answers because my doc is keeping me alive and that's it. This is not something I could approach with him, but it is very real. It mainly means I cannot tolerate crowds, commotion, extreme temperatures, anything outside of a smooth flow. This has caused me to keep my world very small. I do not know if it's the illness, the treatment (Sprycel), or a mental thing that was triggered by the illness. It is a constant struggle to not be irritable with my grandchildren, and that is not typical of my personality. I hate that you both are faced with this at such a young age. I hope and pray that it does not ruin your marriage. 

[shaynalee]

Deb- thank you for the links. it's validating that someone has at least looked into it. His counts are actually normal now, though they were low in the beginning. He is on vitamin supplements that have helped all his numbers come back up and have helped a lot with side effects. At this point, I feel like we were so focused on fixing the physical side effects that neither of us payed attention to the mental aspect. I have tried to get him to use the counseling offered at his treatment center, but he will not go. Has anything other than getting your blood counts up helped with the depression?

Dede- thank you so much for sharing. It breaks my heart to read how you feel going through this, but I am so grateful you are willing share because it's eye opening to me. I do the best I can to be sympathetic to what he is going through, but you are correct to say it's lonely because I couldn't possibly understand, as I am not going through it myself.

The low tolerance for crowds and commotion sounds exactly like what my husband must deal with. Is there anything you would suggest in how to handle these issues with my husband? I don't want to baby him, but at the same time I do not want to be too hard on him. His reactions to every day things have changed so much that I don't know how to be anymore, but I want desperately to figure it out and help him get through this.

[missjoy]

Your husband being diagnosed with cancer at such young age is a tough situation for both of you. No doubt he is dealing with considerable emotional issues. He has a lot of things on his mind. He might be even concerned he would lose you. It is not easy but Please be patient and caring with him. He will get better emotionally when sees his CML is improving and you will stick to him for better for worse.

[Marnie]

Shaynalee. . .is there any chance that you can get your husband to post here?  It's great that you are participating in the discussion boards, but it might be even more helpful for him.  It's a great help to find people who are in the same boat, experiencing some of the same things.

 

Marnie

[shaynalee]

Marnie- no. He really doesn't even want to know anything about it. He just wants to take his pill and pretend there is nothing wrong. He also has Crohn's disease, dx at 23. He is just so tired of being sick... Can't say I blame him.

[dede5]

Is there anything you would suggest in how to handle these issues with my husband? I don't want to baby him, but at the same time I do not want to be too hard on him. His reactions to every day things have changed so much that I don't know how to be anymore, but I want desperately to figure it out and help him get through this.

I wish I had those answers for you. I tried counseling in the beginning, but didn't find it to be helpful. That doesn't mean it wouldn't help someone else. A couple of things I would suggest, would be to just give him some space; that is a lot to process. Also, don't take it personally when he lashes out. It is not aimed at you. And, if he's like me, don't insist that he go places or do things, thinking it will 'snap him out of it'. It won't. This is just my own personal experience, of course. 

[kat73]

Wow.  You've had some really good advice from everybody - I can only second it.  But I might pose this:  how about seeing the counselor yourself?  FOR yourself?  Not only do you deserve and need it, but it may help you turn around and guide him toward understanding as well.  I was once told by a counselor that adolescent boys often exhibit depression as anger - maybe it's somewhat true for grownup males!  It's important for him to feel in control again, and that's why he needs to learn CML 101 - the  more he knows, I think the less fear he will feel.  That is so true also with being on this forum - he doesn't need to worry it's all touchy feely girl stuff.  It's about getting the answers, even if they're basic questions, even if the answers are just anecdotal or opinions - it's about someone hearing you and giving you something back to hold onto.  The LLS materials are very good, but Trey's CML blog is fantastic.

 

It's possible the Sprycel is affecting his mood (I blamed Gleevec for my depression - Sprycel was fine), but at this point it doesn't matter.  He needs to keep taking it.  There will come a point, if all goes well, when he realizes it is his best friend.  But not now!  The best thing for him now is some therapy - truly.  He needs a place where it is completely safe for him to unload his most awful feelings.  No one can really do that with a spouse, a child, a parent, or a friend - because we all have protective instincts for those people - and then we get nowhere.  The therapist is completely neutral and unconnected to you and is a professional active listener.  Go yourself, if he won't.

 

I feel for both of you - I was an old lady with grown kids when CML hit me - never a picnic, but at 26?  Wow.  That is so unfair.

[shaynalee]

Kat- I l was actually thinking this morning of finding a counselor just for me. Outside of the health issues, our life has changed dramatically with both our jobs, so all of that together makes me feel like I need someone to complain at, lol. I do hope that you are right also that he may see it help and then go himself.

Thank you for sharing your own feelings. It's very helpful in trying to see things from his shoes. I really hope he decides to join the discussion on here someday. I think he would find a lot of comfort and understanding with all of you.

[Melanie]

Crohn's disease and CML dx in your 20's. My heart goes out to both of you. Great advice being offered here and don't have much to add... Just wanted you to know we care and feel for you and all that's on both your plates.

From my family's experience in dealing with my CML, we've learned that although it's me with cancer and all that goes with that, it took a while for me to realize how much it affects all my family members too. It finally dawned on me that these people I love so much, also were struggling with their own emotions about it. It wasn't just me, but all of us were basically dx with cancer. All of us living more in the moment has helped and focusing more on what's really important.

Counseling would be a huge help to both of you and if he won't , you still need to go. Please take care and I'll be praying for both of you.
Melanie

[thedook]

I have been on Sprycel for a year plus and I know I am definitely more irritable and am more prone to mood swings.  I am sure a lot of it has to do with the chemicals coursing through me and how they interact with my body.  I am also sure a lot of it has to do with just dealing with CML in general.  I don't sleep as well, my body aches more, I get fatigued more often and more quickly and so forth.  Compound this with the fact that most people don't understand CML ("you look good, you have your hair, are you sure you have cancer?) and it's enough to make the most calm and serene people a little pissy.

 

A lot of my irritability comes from the fact that there is now pre-CML me and post-CML me.  Post-CML me can do many of the same things pre-CML me can do but not quite as good.  I get tired, I forget stuff, I have the next BCR-ABL count looming over me and so forth.  It's frustrating because you are still you, just not quite the old you.

 

Even though I am blessed to be able to take this miracle drug that keeps the leukemia at bay, it still sucks to have it. Then I have guilt about feeling that way because I should just be thankful, end of story. Look at all the other people who have "real" cancer that measure their life expectancy in weeks and months.  It makes you feel very conflicted and no one really knows what you going through.

 

Ultimately for me, it's about frustration and anxiety.  Post-CML me doesn't always quite know what to do, how to act or how to feel.  It's kind of like being a baby or toddler again.  Babies can't communicate so they cry.  Post-CML me takes out frustration by doing the adult version, picking a fight over something trivial.  The way to try and deal with is to foster communication, first and foremost. Encourage your husband to talk.  If he's like me, that's not easy.  Most guys aren't big on sharing their feelings.  I am still learning on how to do it. Yes, cut him some slack but within reason.  For me, it's helpful to remind myself just how fortunate I am.  Perhaps you can help him see that as well.

[kat73]

Golly - well put.  You've really captured it.

[shaynalee]

Wow, some really great stories and advice here. I know I've said thank you plenty of times, but truly, I appreciate each of you taking the time and sharing your personal struggles.

[surfdaisy76]

Wow.  The post from "thedook" made me cry.  I know I'm a baby in my CML journey of only five and a half months...but you described exactly the way I feel some days!  I know I should be grateful for the medication and that this is the type of cancer I have but sometimes I can't help but think...this time last year I was "normal"...or at least I thought I was!  I get so mad when I feel tired or sick...I was always the strong one!  But on the other hand, I read some of the other posts here and I know how blessed I actually am and feel a little ashamed for feeling sorry for myself.

 

Again...so glad I found this place...it helps!

 

Have a good weekend everyone!