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CML "Guilt"

Guilt Strength CML

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#1 Anwalz


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Posted 05 February 2016 - 09:53 AM

My fiancé opened up to me last night about feeling "worthless, like crap, and pathetic" because he feels he can't be the "strong" one in our relationship, due to him being sick. I reassured him that just because he's sick, doesn't mean that he's any less of a person, or a man, but it is still challenging for him & he feels guilty for all of this. Any advice/tips/suggestions for me, in order to help him with this?

Thank you!

#2 Trey


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Posted 05 February 2016 - 11:05 AM

This is only temporary from the CML itself plus starting drug therapy.  Over time he will see major improvement. 

#3 kat73


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Posted 05 February 2016 - 01:04 PM

Anwalz - Trey is (pithily) right.  I could get quite wordy, but he inspires me to distill my advice to you.  First, how great that your fiance has opened up to you and that you are there to listen and reassure - keep that up!  Men sometimes find it really hard to open up.  To you:  listen, listen, listen.  For him:  It would be an excellent idea for him to start seeing a therapist, because he WILL censor himself somewhat with you, and you cannot HELP but want to "fix" things - neither of which will help move him along.  Your love is what he wants and needs from you.  Second, both of you get as educated as you can about CML and TKI's because knowledge helps slay fear.  This isn't as arduous as you might think, as you have definitely found yourself in THE BEST place, right here.  Ask anything and you will get a swift reply from someone on here who knows what's what.  Read Trey's CML blog, and you will know absolutely everything you'll ever need to know about CML. Third, and maybe I should have put this first:  I would venture to say that everybody here has felt the same feelings as your fiance, especially in the beginning.  It takes tons of time to adjust emotionally.  (Years!) Feeling physically like crap may or may not go away - most of the time with most of the side effects, they either lessen, disappear, or you get used to them.  But sometimes a drug switch helps enormously, so don't feel condemned to live this way forever if it gets unbearable.  I think ten years ago oncs didn't believe us when we complained; I think now there is more understanding that this is not a walk in the park.  We are at a very odd spot in this modern age of miracles - CML is "almost" curable.  But in that tiny wedge between treated and cured is an emotional abyss and your fiance is going to need to come to terms with that, and you will need to understand.  It isn't like chemo or a tumor that can be cut out.  It isn't ever over.  You look and feel completely different from the you of before, and yet the world doesn't see it and doesn't get it, like it would if you lost your hair.  There are existential ramifications out the wazoo.  But, I'm getting wordy here.  I'll just leave you with this:  things will get better.  Really.  It will take time.  Keep posting!

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#4 pammartin


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Posted 05 February 2016 - 04:53 PM

Sharing is a positive step toward him feeling better about himself.  When we are diagnosed, the majority of us have guilt feelings, everything from our diagnosis, to our immediate limitations from the TKI's, to thinking we should not put people we care about through all of this.


It is a process, some work through it fairly quickly, others take longer.  As he takes his TKI and the side effects begin to lessen and he feels better, I believe he will feel better about himself and his disease.  For the first year I felt guilty ever time I had to pull my son from school and my husband had to take off work because with the trip it was an entire day.  Then I felt guilty because I did not feel well enough to make dinner, keep the house clean, or spend time with my family. 


By the time I was about six months into treatment, the initial side effects had settled down and I was once again doing things at a slower pace, but feeling like I was accomplishing something and we shortened our outings to ones I knew I could handle without zapping all of my energy.


It is a shock to everyone when the diagnosis is given, then when treatment is started it often feels like a hammer just slammed down on life.  It will get better, and he will feel better.  Hang in there, and please tell him to allow himself the time to adjust to the changes. 


Best Wishes.


#5 hannibellemo


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Posted 05 February 2016 - 06:18 PM

It sounds like you two have a very strong relationship and that will get you through a lot. I speak with experience from a marriage of 43 years.


We are so lucky to be living when we are, with a treatment that works for the vast majority of us. The initial shock of diagnosis takes awhile to get past. He will start feeling better and stronger as time goes on and he really begins to believe that he is going to beat this thing and live.


If he wants a safe place to vent it might be a good thing for him to set up his own account. The burden of learning about his disease shouldn't fall just on you.


Don't walk on eggs around him, expect him to do what he did before but realize he may have days when he truly feels like crap, for awhile at least.


I'm looking forward to seeing photos of your wedding! I'm so glad you found us.



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#6 thatguy


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Posted 05 February 2016 - 09:27 PM

Assurance, reassurance and more reassurance. It's good that he felt confident in venting to you, and that you were obviously empathetic enough to seek out help. The "what if's" are likely eating at him, and discussing those that he brings up will likely improve his emotional state. We all kind of had this bomb dropped on our lives, and suddenly stuff that mattered, doesn't so much, and the the stuff that really does -that you maybe never gave much thought in good health- matters in full magnitude. Hang in there, try to see the good with new appreciation of this fragile life.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#7 mlk210


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Posted 05 February 2016 - 11:30 PM

Everyone is giving you great advice. The initial shock of the diagnosis is hard and those what if's just don't go away. In time he'll feel better. There is guilt when you're the sick the one (at least for me). Even this past December when I got my plural effusion and had more doctor appointments than normal, I felt bad for my husband taking off work, or my parents having to watch my kids. To me, I need to be the strong one. I'm the wife and mother. The one who keeps us on schedule. When my appointments put wrenches into our day, I hate it. 


I had a similar conversation with my husband right after my diagnosis and he assured me like you did your fiance. I trusted our love and him, but his assuring didn't change my thinking. Until one day, I realized I was still doing everything I had been doing before. Maybe I fell asleep a little earlier, and felt my long day a little more in my muscles. All in all, I was fortunate to still be able to get my two five year olds ready for kindergarten even with the killer Sprycel headaches. Time will help him!

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable


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