DLBCell Lymphoma - wanting to know if someone else is experiencing similar symptoms

[Jaxie]

Hi all.

I was diagnosed with Diffuse Large B Cell Lymphoma on 4th Jan this year.

I also have common variable immunodeficiency diagnosed 4 years agoish.

I have had my lymphoma for over a year before diagnosis was made, unfortunately the doctors didn't listen to my symptoms when I was mentioning them. I then gave up as I felt they just didn't believe me. 

However that being said I was suffering bad to severe headaches daily for 6 months before my diagnosis. 

I was told by my specialist I would not have anymore headaches after my first chemo  ( R-CHOP ) I had my 5th chemo 10 days ago.. my pain meds strength was increased. Oxytocin, 

My headaches are progressively getting worse, vomiting has started which I did not suffer with from chemo fortunately. 

I get dizzy, of Balance at times absolutely no energy, the itching had before treatment has returned,  I have other side effects from the chemo but I don't think these headaches and dizziness getting worse is chemo related. 

I've mentioned this to my specialist along with me saying I feel something is wrong aside from what we already know... 

My MRI and CT scans are clear my bloods are ok so I understand it's difficult for him. 

I have one more chemo yo go then radiation, I am now pretty much house bound due to these headaches and dizzy spells... I'm 42 worked full time now just blahhh 

If anyone has any ideas I would love to hear from you.

Sorry if it was a negative post I just needed to put it out there as friends who I love just can't understand as much as they want to 😀

Wishing everyone every success with treatmemts and future's 

[Katekat]

Hello @Jaxie and welcome.

Thank you for sharing your experience with us and you definitely wouldn't be alone, there are others here who have likely been or are going through the same or similar as yourself.

Please don't be afraid to share here ever - the good, the bad and the ugly parts of cancer all definitely have a place here. Has your specialist mentioned any other possible avenues for investigation or given you any advice re the headaches and dizziness?

Sending you hugs! 

Kate

[Jaxie]

Hi Kate 

Thank you for you're reply. It's comforting to have a place to ask questions and share experiences and learn from others. 

I've had a few CT scans the mist recent being 2 days ago due to ending up in Emergency via ambulance as the pain was out of control  ( heafache) still showing clear results. 

No other form of investigation at this stage. 

I see my specialist in 10 days so I'll be nicely insisting more investigation needs to be done. My pain meds were increased again. 

I understand it's difficult for the doc's when results say clear... 

Hugs back 

Jaxie