First round tomorrow!

I might have posted in a different place earlier. I have my first treatment tomorrow for DLBCL. It seems to just be in my neck at this point. I’ll be doing 4-6 rounds of RCHOP followed by radiation. I’m 50 years old and this came out of nowhere! I had routine check ups, blood work, mammogram, colonoscopy and everything was great and then bam...lump in my neck and you have cancer.  I would appreciate any advice on how to get through treatment. I’m ready to get round one done so I can see how I deal With it. Thanks in advance for any advice!

  • Good luck today - first round of RCHOP for me too so I’ll be thinking of you. Apparently pineapple helps get rid of the metallic taste according to a friend of mine. I’m going to give it a try

  • Hi again  and welcome to this corner of the community.

    I am Mike and I put up a reply in your New to Community post. I help out around our Lymphoma groups. 

    I don’t have DLBCL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

    You diagnosis journey is rather normal, this is Lymphoma for you but good that it has been found and treatment is starting quickly l.

    The treatment pathway you are on is used a lot, it’s very effective resulting in good results, although very do-able some folks experience some bumps in the road but these are all manageable.

    In you first post you mention “I will learn the stage then and am hoping it is stage one” It is important to understand that staging in blood cancers like NHL is completely different than in sold tumour cancers like breast, lung, kidney….where a stage 4 would be seen as a poor prognosis….. in Lymphoma it’s an indication as to where your Lymphoma is presenting, what treatment is required and for how longer….. I was stage 4a and in reality it made no real difference to the outcomes….. good news.

    You are going to have lots of questions so ask away as we are around to help you navigating this journey ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Well I’ll be thinking of you as well! I will definitely try the pineapple. Good luck to you today! I’m a little nervous but ready!

  • How are you doing? Hopefully

    all under way and you’re coping well and being looked after. I’m doing ok and they’ve sped me up a tad but will be in at least until 4pm as first sesh. Lovely folk here and the nurses are fab. 

    Take care! Please let us know how you’re doing when you can. 

  • Hello again! I am more than half thru and am doing ok! I did not have to have a bone marrow biopsy so that made my day. So far so good.  Hope you’re doing ok.

  • Well I am stage one as it is only presenting in my neck. This is a familiar road for me sort of. My mom had the exact same cancer. She recently had her 5 year scan and it was clear. I believe all the stages are treated about the same. I did read that what I have is very common as is the treatment I’m on and honestly if I had to pick a cancer, this one isn’t the worst.  Today has not been bad. I’m sure the worst is yet to come. I’m very hopeful  And appreciate the support. You’ve been a long journey with cancer. It will be a forever thing for you won’t it? Hugs back to you!

  • Hi both I had 8 rounds of rchop back in 2009 and its a do-able treatment, if you don't react to the rituximab and treatments will be quicker each time you have one. Side effects are cumulative and remember not everyone experiences all of them. The common effects are: fatigue so exercise daily by walking, constipation due to the drugs, manage that as best you can; metallic taste - not a lot other than find some foods that still taste ok'ish, some times spicy foods help and do eat even when you don't feel like it. Dry mouth use pineapple mouth ulcers make sure you have difflam and the doctor should prescribe that for you. If you don't have your prescription exemption card ask for the form from the specialist nurse and apply asap. Some find after a couple of rounds the steroids cause sleeping problems, mood swings also happen. Keep a daily diary and take it with you when you have meetings and you will soon get into the cycle - treatment mid treatment check up, bloods pre treatment and then the next cycle. I found the first one a walk in the park though it was a long one as I did react to R. Any questions just ask.

    john

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Thank you so much! I feel like my questions are getting answered before I even ask them! I’ve not had a reaction to anything yet so fingers crossed. I was just ready to get the first one done!

  • Wow, late one for you but great no reaction to the rituximab so hopefully not such a long session next  time. I did fine today too, thanks for asking. Feel a bit tired and spacy but ate a piece of cod using chopsticks as the metallic taste not terrific! I’ve just this minute made a chart for my meds. It’s a lot to get your head round and you will walk out with a pharmacy full of drugs that need to be be taken: multiple times a day, daily, on set days. I found it useful to note what they do and also whether to take with full glass of water/with meal etc. Just helps with the feeling of being a bit more in control of what you can control as other members have reminded me about. 

    thanks for keeping us updated and thanks John and Mike for the encouraging words to us! 

    Sending you virtual hugs 

    Gill 

  • I made it through the first round with no problems. Like you, I feel a little spacey and tired. I had dinner and feel ok. I know what you mean about the meds. I’ve never had to take so many! Hope you are still feeling ok! Sending virtual hugs back!