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LMC/CML and not wanting to live with side effects anymore

LMC/CML and not wanting to live with side effects anymore

Posted by Gabrisia on Feb 23, 2018 2:50 pm

I’m writing here today thinking that I might be alone with this dispear. I’m 35, PhD candidate. I can’t work more than 15h/week of intense activity or 25h/week of computer work. Otherwise, when I’m tired strong pain start everywhere in my body and it takes twice as much time to recuperate from it. I read forums about CML and its treatment and side effets (was on Gleevec, now on Sprycel.) it’s commun. I’ve been on these treatment for 4 years (with those side effects). I can’t work normally or live normally. My doctor says “ at least your alive!” True, but right now I don’t want to live like that anymore. With contant pain. I mentally and physically can’t. I don’t want to live like this. Anyone else feels tired to accept to live with constant side effect of pain and no solution?

Re: LMC/CML and not wanting to live with side effects anymore

Posted by Elsie13 on Feb 23, 2018 6:06 pm

Hello Gabrisia‍ . Sorry you are going through this. I had ovarian cancer, so I don't know about this. Is it Chronic Myeloid Leukemia? If you go to 'Members' and look for 'Irvish' you will find a couple of interesting posts. Is Irvish‍ still visiting the site? Perhaps you can connect with Hsmer1(AML)‍ ?
You can also look at https://cancerconnection.ca/discussions/viewtopic/77/58161
Any ideas Lacey_adminCCS‍ ?

Re: LMC/CML and not wanting to live with side effects anymore

Posted by donna57 on Jan 19, 2019 11:57 pm

Hello,

My husband also has CML, and has the same side effects as you mentioned. Wondering what you have tried since February 2018 for the symptoms? and if anything has helped.
I hope you are doing better now. 

My husband stays positive by sleeping alot! and and using the energy he does have to do things that make him happy (like playing with our kids). Like yourself he is tired often, and cannot do too much, or he is extremely tired, and pain all over his body. 

Re: LMC/CML and not wanting to live with side effects anymore

Posted by Elsie13 on Jan 20, 2019 7:17 pm

Hello donna57‍ . Sorry to hear that your husband is going through all this. Gabrisia‍ , can you perhaps give an update, let us know, and let Donna know, how things are going? 

Re: LMC/CML and not wanting to live with side effects anymore

Posted by princessmaura on Jan 21, 2019 3:49 am

my aftereffects from the chemo treatment of frequent vomiting when I eat certain foods that do not agree with me makes me think along the lines of quality of life, not quantity of life...it's not pleasant being sick so often, at times...

Re: LMC/CML and not wanting to live with side effects anymore

Posted by jaacck on Jan 22, 2019 10:16 pm

that’s horrible to live in pain, I’m so sorry to hear, I’m just wondering, are use prescribed any pain medication, opioids? Do they help? I take hydromorphone 3 times a day, I would not be able to handle my cancer pain in the rectum without it.     Jack

Re: LMC/CML and not wanting to live with side effects anymore

Posted by EllieM on Jan 28, 2019 1:46 pm

Hello Princessmaura,
I do not have the type of cancer that you have but I hope that you'll forgive me for butting in.  Your story truly resonates with me.  I have had nausea since September/17.  The GP I had at the time didn't have a clue and didn't want to have a clue as to what was wrong with me.  I was very anemic.  My hemoglobin was 88.  I filled myself with iron supplements and foods rich in iron and my hemoglobin became stable.  I was still sick.  I (happily) changed GPs and with all of the tests they found cancer between my lungs.  Unfortunately, by that time, the cancer was stage 4.  I've had radiation and have one chemo treatment left.  Here I am, still battling nausea.  I too wonder if this is worth the time it may give me.  They haven't found the cause of the nausea.  I've had numerous body scans and two brain scans.  I don't know how effective (if effective at all), the treatments have been.  I have to keep reminding myself and others that these treatments will not cure me.  They will only prolong my life.  Is this how I want to live?  What kind of life am I possibly adding time to?  I'm very sick and so, so tired.  I will never, ever get my life back.  Is this what I want?  I really don't know.  A dear friend of mine was diagnosed last spring.  She refused treatment.  She passed away a few days ago.  Her passing has really made me think.  I hope that both of us get through this mind set.  Miracles do happen.  Changes in treatment options for cancer and treatment options for side effects can happen at any time - maybe even a few weeks from now.  I have promised myself that I will give this some time.  I hope that you too decide that.

Re: LMC/CML and not wanting to live with side effects anymore

Posted by princessmaura on Jan 29, 2019 4:17 am

EllieM‍, I'm sorry to hear about your nausea and suffering...yesterday evening, I vomited, again, after eating food away from home...this vomiting mostly happens when I eat food away from home that my body is not used to eating...the chemo has made my digestive system very sensitive and easily reactive...
you are right in evaluating your quality of life...as a late stage cancer patient, I think of how I want to live out the remaining time I have left, and that is to enjoy it if I can and try to reduce the suffering...

Re: LMC/CML and not wanting to live with side effects anymore

Posted by Lacey_adminCCS on Jan 30, 2019 12:17 pm

donna57‍ 

Is your husband's medical team aware of the pain? Any improvement since we last heard from you?

Lacey

Re: LMC/CML and not wanting to live with side effects anymore

Posted by donna57 on Feb 8, 2019 1:11 pm

Hi Lacey_adminCCS , Thank you for the follow up.

Yes his doctor is aware. We just wanted to get feedback on other people with CML and same symptoms around his age, and what they are doing to help with the symptoms.
 

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