I was diagnosed in January this year with advanced disease stage 3/4 NLPHL Hodgkin’s lymphoma and started r-chop chemotherapy at the end of January and have now had my 3rd chemo. I’m now Anxiously waiting for a ct scan next week to see if the treatment is working so far.
It’s been a long time to get here, I’m 38 and was referred two times as a urgent haematology cancer pathway patent over the past 6 years despite having a number of b symptoms and swollen lymph nodes for a number of years nothing was found until this time. I struggle to walk far, get bad pains in my back and leg and get out of breathe when walking or walking up the stairs, I have bad night sweats, I have bad itching all over with dry areas of skin, a few rashes, and am just generally not able to do much nowadays so I’m praying I’m getting better altho it doesn’t feel like it at the moment and feels like I’m going downhill still.
does anybody have any experiences or advice?
Dear @Ben841,
Welcome to our forum and thank you for sharing a little about yourself and your experience.
I am so sorry it took such a long time to get your diagnosis. I can only imagine how difficult things have been.
It sounds like you still have quite significant symptoms which could be due to both the lymphoma but also your current RCHOP treatment. Have you spoken to your team about how you are feeling? It is important to keep them in the loop with how you are getting so they can try to find ways to support you. Can I also check if your shortness of breath is new or worsening, please do seek medical attention for this.
I am sure you will get some great support here from people with lived experience but please if you would like to talk, we are very happy to support you also, you can call us on 0808 2080 888.
Hi @Ben841 a great big welcome and I hope you have found us quicker than it took you to get a diagnosis and start treatment.
I am so glad you have persevered. @Heidi-J-BloodCancerUK has given you a great response and I hope others can share their experiences for you.
I need to write down all my symptoms, their severity and impact on my life for my appointments, or when I contact my specialist nurse or medical team. The same with fears, questions and practicalities.
Please do let us know how you get on and really look after and be kind to yourself.
Hello @Ben841
I have a similar story I was unwell for many years before my diagnosis. But lymphoma was eventually diagnosed in 2018, by then I had a large mass in my abdomen. I went on to have 9 rounds of RCHOP and 2 years of maintenance rituximbab.
That was 8 years ago.When you are in the middle of it , it feels impossible and I get how you are feeling right now. My mid way scan showed little disease improvement at all. I was devastated. It could have been all too easy to lose hope. But my team and family were amazing and encouraging. They supported to push on. My final scan wasn’t ideal either. I asked for more chemo ! My consultant had never ever had anyone ask for more chemo! And we blasted it with three extra rounds. After 9 rounds I did get it to shrink some.
I never got remission but it shrunk , I haven’t had any symptoms or problems since and I remain in active monitoring. My team see me regularly it was every 6 weeks then 8 more recently it went to every 12 .
You will get through it. My advice be kind to yourself, look after yourself. Find things you enjoy and do them every day. I enjoyed walking and yoga and that got me through my treatment along with drinking lots of water. I’ve kept two of the three up ! The water would you believe is the one I just can’t stick to! Always here if you need an ear.