5 replies to this topic

[GF of a man with CML]

Hi there every one, I'm sorry if i had posted this in the wrong spot but i am new to this page and wasnt sure where to start.

 

I guess ill start at the beginning. 

 

Long story short I have met the most amazing man and have fallen for him very quickly and he has recently told me that he has CML. I am studying nursing and have an idea about Leukaemia, but i got on google any way and read a lot !  

 

My feelings havent changed toward him what so ever! if anything they have gotten stronger. He hates it when i get concerned or worry about him, but it is so hard to try and ignore the fact that he works way too hard and doesnt eat enough when he is busy at work (even though the dietician has told him he needs to gain weight). 

 

I want to be there for him when he talks to me about how he is feeling and when he tells me what the doctor says at appointments, but it is difficult to not want to protect him and make sure he is ok all the time. 

 

The last thing i want to sound like is a poor girlfriend that is struggling with his diagnosis, when really he is the one who is going through it and has the actual disease. 

 

And the biggest thing is the fact that his type of Leukaemia (CML) isnt curable...

 

I am in this with him for the long haul, I would just love some advice of other partners going through this with their loved one and ways how they support their person with out seeming controlling and overbearing.

 

Any information would also be wonderful.

 

Thank you so much in advance.  

 

From a lost and confused GF of a man with CML.

[Trey]

Always a pertinent topic.  We have a few caregivers on here, but mostly you will get inputs from the CMLers since they will have useful inputs for you to consider.  There are no 100% right answers on this question.

 

There are multiple viewpoints, and I will take his view for the moment.  As a man who has lived with CML for 11 years I don't want anyone to dwell on the subject.  Those of us with CML should not be treated as though we are "sick".  We are not sick.  Often we view trying to talk about the CML as treating us as though we were sick.  We have a chronic disease which should be controllable for the rest of our lives.  Mostly, we want to just get on with life and not be bothered about the issue.  There is nothing unhealthy about that; in fact, it is a very healthy approach as long as the CML is under control.

 

There are two phases for dealing with CML, and the discussions should differ depending on the phase.  The first phase is getting the CML "under control", defined by PCR tests showing a good response.  The second phase is living with the disease over the long term once a good response has been achieved.  You did not say which phase he is in.  If he is in the first phase, there might be relatively more discussion, although supportive not inquisitive.  Once in the second phase, there should be almost no discussion -- just whether the latest PCR showed continued good results.  It is good medicine to forget about having CML in the second phase as long as it remains under control. 

 

The things you are always "entitled" to know is his PCR results and any drug side effects which bother him.  Personally, I would ask him to agree that he will always do that so you can stop worrying about him.  Otherwise it is healthy for him and the relationship to simply forget about the CML and get on with life. 

 

You should also read this if you have not yet done so:

http://community.lls...ed-cml-patient/

[steelpony5555]

As Trey says as time goes on you stop dwelling on the disease.   When it's time for your blood test and Dr. appt you do get a little anxiety until the Doc says "your numbers are good".  But it is always in the back of your mind.  The biggest pain it the side effects.  Even these vary from person to person....some get them worse then others but it is something to just deal with and overcome.  The biggest is probably the fatigue and tiredness.  That is something I tried to fight at first, but I soon realized that when I fought it I really screwed stuff up and could not think straight.  I know now to just go and take a nap.  But true I still do not want babied.  My wife is one who is always after me to eat and take my meds....she is a good woman.....and sometimes even though I hate being babied I need that extra little push.... 

[scuba]

Of all the Leukemia's - CML is the most treatable and responsive to treatment. More than 95% of people diagnosed with CML and treated will live normal lives. Many patients will respond so well to treatment that they will either be able to reduce their drug dose leading to less side effects or stop taking their drug altogether (treatment free remission). Depending how long your boy friend has been living with CML will probably guide you on how he is dealing with it. For you - it is new, however, and my best advice is to take your cue from him. 

 

Trey's link above is a good start. Another one is the NCCN guidelines which explain the stages and treatment protocols.

 

https://www.nccn.org.../cml/index.html

 

Twenty years ago, CML diagnosis was almost a death sentence. Not any more. The mindset that "we have cancer" lives on and can affect how we feel, but for the vast majority of patients, we will live normally.

[Gail's]

GF, welcome here. This is a very helpful site for anyone experiencing or watching someone with CML. I was a nurse for about 24 years before being diagnosed with CML. The majority of my nurse friends were born caregivers prior to becoming a professional caregiver. Some weird part of us says it's our duty to keep alert to problems with those around us so we can take care of them. The trick is to trust the person with the problem to reach out when things aren't right. In this early time of your relationship with him, you will need to focus on helping him build trust that you won't freak out if he mentions a health issue. Just take a deep breath and wait if you feel yourself wanting to hover. Sounds like he's a very competent person and let him know you trust him to include you in all important aspects of his life.

I agree with Trey. Ask him to always tell you his latest pcr result and what the onc thinks of it. To help yourself thru the completely natural anxiety you feel, find a cancer support group that includes family members. He probably doesn't need to go, but it would be really good for you to have a place to vent your concerns, realize your response as a family member is very common, and get great support to move toward the place your BF is in his thinking. For the first year plus of my cml experience, I really needed to talk, talk, talk about cml. Mostly about the ghastly med side effects of gleevec. Much improved since I'm on Sprycel, btw. I even told a friend that I get tired of talking about CML. Sounds like I'm reaching the mindset he's in.

[tiredblood]

It has been my experience that men generally don't like to talk too much about their health condition(s). Adherence to taking the medication is important for a continued good response to the drug. I've resigned myself that I will just have to endure the non-serious side effects and report any major side effects should any occur.  Ideally, a 0.000% result from the PCR (polymerase chain reaction) is best, but some patients respond more slowly or have a low level residual result.

 

You mentioned studying nursing. That's great! I wish you well in your educational endeavors.