Whoo. My emotions are all over the place. I’m doing well on all “counts” but as a gay man I don’t think my friends quite understand. Everything in the past is coming into my mind like cinema. My first boyfriend died of AIDS so memories are not comfortable.I’m also lucky enough to have life in the UK that others might want with some beautiful homes.
WAW was hard and I think it made me a better person, I was diagnosed at age 50 after a random test to check for HIV! I was negative (still) but it made my new boyfriend even more upset!,,,,,
Month (Cycle1) strange feelings and strange dreams. I had so plan this treatment so go a new puppy in in summer so he’d be ready for me . Problems standing up quickickly.
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Gaday
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Gaday, are you talking about dizziness when you try to stand up quickly?
It is understandable for you to be emotional as it appears your friends are not understanding your situation. People with CLL often do not have the same reactions, side effects, sickness episodes that are connected to other cancer treatments. And, when you do not look sick, people somehow think you can't be sick. It is frustrating to say the least. But, it is very real and you are not alone in your experience of that.
Do you feel your emotions are from the treatment? If so, it would be wise to talk with your CLL Dr. And, while many of us do not want to believe we could need to maybe find a therapist with whom to talk about our situations, that can be a very helpful thing to do when in cancer treatment. Being vulnerable is not something to be ashamed of, it is human and when the vulnerability isn't understood, it is not helpful to our healing.
Having a person who has no connection to us and has an understanding of how to guide us as we find our way in a most scary life changing situation, is a very good move, if you can do so.
If it is dizziness you are speaking of, the following is a good overview of possibilities for dizziness, one of which has to do with anemia--so, you would be wise to call your CLL provider or PC/GP to check that out.
I’m a terrible patient with therapists! Never had much successful treatment in the past. I do think my emotional state is due to the treatment as I’m finding each cycle harder than the last with more symptoms. I’m 10 days into cycle 5 and after one of your replies suggested anaemia - I looked online and I have all the symptoms of haemolytic anaemia so will visit my CLL Specialist this week. The FCR drugs must also take their toll on the emotional mind....
I think you're brilliant for posting how you feel. A lot of us felt all over the place during treatment and by you doing this, you'll help others know its normal to not feel normal. Treatment and life afterwards can be a lonely old road but you've got us now too.
Is your FCR, pills or IV? In USA they are IV. I did 3 rounds and reached remission. Do u take FCR for 6 months ? Not everything is CLL related. Let ur hematologist know and if it isn't from FCR, then get eyes and ears checked. Are u taking any other meds that have dizziness as side effect?
The mind and emotions can be a bit of a bugger! Just because we are adults and men we should be strong and cope. First, it is OK to be emotional that is normal. Don't try to bottle it up, friends can feel uncomfortable trying to be helpful. Some of mine avoid the subject. I have spent time being open explaining what CLL is as I am a great believer in knowledge helps people make choices. Find friends who can listen, can be comfortable with you and feel free to share on this forum. I have and there are wonderful empathic and wise folks here, some even with the same quirky sense of humour I have. Also join the CLLSA, cllsupport.org.uk/ its free, read the info on the site, register for one of the conferences, they are popular so be patient and watch the experts who speak at the conferences via the clips on the website.
HI Gaday, because as you said you are doing well on FCR friends don't see the emotional difficulties you are having. After all, because you are not wearing sticky plaster or bandage they assume you are ok. Maybe some counseling would help you, speak to your team. I do think FCR does make you feel emotional I know my husband was at times. It does get better, and blue skies will return.
So much more affects one having CLL, and I guess especially when having treatment, than blood counts and physical symptoms.
Ten years into your CLL journey and reaching landmark 60, it’s hardly surprising a period of introspection is rewinding past memories and events through your head. Unfortunately it’s often sad or regretted moments that replay most prominently. You seem to have an otherwise comfortable life so that is one concern less.
If you are able to focus on the happiest times in your life and recapture those lovely feelings that may help, though at times like this that may be
counter productive.
Hopefully this period in your life is soon over and you find yourself coming out of the doldrums, if not many find the help of a counsellor invaluable on helping one get back on an even keel. Though furry pals are helpful too.🐕🐩
This community as you will have noticed is a special one and I hope you will find comfort in it as many do.
Only to let you know, my FCR 6 Cycles was 10/13 up to 4/14! Since then MDR neg. all counts in normal range. Last Thursday CLL was 0,02%! I used to have 0,2 or 0,4% already. Means more or less undetectable.
I fell great after nearly six years after diagnosis.
I really empathise with your feelings. My mother died a year before I started FCR. She had been very poorly for six months before that. During FCR, all those painful times I went through with my mother resurfaced and came back to haunt me. In cycle 2, when I was so breathless I couldn’t walk far, I remembered her struggling to walk a few steps, though that was due to heart failure. My brain just kept connecting the two traumas constantly and it isn’t helpful!
You are probably anaemia, maybe even badly so. Please get checked ASAP.
This CLL certainly messes with your head even before treatment. Hopefully the memories of better times will see us through the bad until the good times come again.
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FCR stopped after cycle 5
Anyone know if CLL 10 trial (FCR v Ibrutinib+R) is open for recruitment anywhere in UK?
7 months post FCR and I’m back at A&E
