I have a large mass in my retroperitoneal I have have my first round of R Chop I am feeling very emotional about the second. Has anyone has a mass like this and can anyone give me some positive feedback.
Hi Verity25 and welcome to our little corner of the Community.
I have a different type of NHL and my mass was in a different position. At the start of my chemo my mass was the size of a brick located in my neck. It’s all very scary but these treatments are very effective.
I had an advantage as I could actually see my mass melting away in front of our eyes. By the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.
So only a positive reply from ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Gosh, that sounds scary, I am sure we are all scared and deal with it in different ways. This community seems very supportive and it's nice to be able to share and get some advise. Thank you so much for your reply and hopefully you are now recovered.
Good morning Verity25, the part of my journey described above was back in late 2013 into 2014. My treatment journey went on from there as my type of NHL had become very aggressive so I went on to have two Stem Cell Transplants (hit my community name to see my story). But I am happy to say I am doing great and as fit and active as any 66 year old.
My type of NHL is incurable but the years of treatments did put me into remission in Sep 2016.
My clinical team have said their hope is my treatments have put my cancer to sleep for along time….. so I must not kiss a princes
But for me this is all an amazing result as up until then I had never had remission that lasted more than about 6-9 months over my first 17 years - so am living the dream.
Do also check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good up to date Lymphoma information, videos and run regular regional online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where you can be linked up with someone who has walked the same treatment journey.
Always around to chat.
Thank you so much for all the information. I have now read your story, it's lovely that you are able to help and respond to so many people. Carry on living the dream. : )
R CHOP is VERY effective treatment. Im 3 years post RCHOP and doing great.
Check out my posts, and learn how to help the most powerful defence your body has in altering your immune system to change your production of rouge cells ..back to normal!
And talk to your body! I did every day. I was stage 4 multiple tumours in my stomack, spleen, rib cage groin and spine! Big deal I thanked my rougue cells and gained rapport with them..then said hey guys...parties over thanks but goodbye.
Thank you for your reply. I am very positive with my friends and my son, but when I am alone in the shower as most of my hair has now fallen out and feeling exhausted I have a cry. I am mostly positive but lose it every day for a short spell. I feel that this is a place where I can put my emotions.
I take on board what you have said and will I am sure get more confident with the situation as I am normally a half full type of person. I also love what Mike has said about the battle between the ears, that's what it is. I must forgive myself if every now and then the dark side has a moment but I will get continue to get more positive and anyway I can read my messages again to help me get a grip
I am so pleased that you are doing great.
I noticed my hair coming out at 20 days after my first RCHOP. So I got out the clippers and razor and became a slappy head. I NEVER got used to being bald, despite mates saying it suited me.
That said I know as a man, its no big deal...really. but for a woman its a very different story. What woukd I do..if I was a woman?? And NO! I'm not goingbto crossdress to test my theory!! Lol
I would aways look for the positive. HOWEVER bad...there is always something positive to take. Me? Id say WOW! The chemo is working ALREADY!! How powerful is that! AND ITS ONLY temporary. So I got no hair!! I can choose a wig and have the style colour I always wanted!
Stay strong and positive Verity, ...You are being treated for a temporary illness...THATS ALL!
NOW SMILE! X
So lovely to hear from you, I must admit felt rough after my second R Chop on Thursday feeling a bit better today. Yesterday I shaved off the last remaining hair on my hair. I was blond and to be honest I felt empowered as I controlled it and just didn't wait for the final strands to go. Then gave myself a facial, lets hope I hang on to my eyebrows.
Thank you so much for taking the time to support me and of course you making me laugh.
Well done Verity taking control and shaving that last bit of hair off. YOU were in charge and that is incredibly powerful! As for your eyebrows, if you want to keep them? Buy small box as chances are very high they are going!
Im pretty sure you lose the lot with RCHOP. And I mean everything! Its funny showering after because the soap is soooo slipery, it goes flying until you get used to it. Its it a bit like washing a slug lol!
Changing subject I was advised to drink more than recommended especially the week of chemo. I think I did 5 litres a day!! It flushes your system...its hard drinking that much...but theres a lot of toxins to get rid off.
Ive always had a reasonably good diet, but I did buy a Philips juicer and upped my intake of fresh juice. Some of the conncoctions I made with kale anx brocoli tasted worse than the devils bottom. But add a couple of carrots and a an apple and it not too bad.
Oh and I walked every day about a mile (we'd just got a goldendoodle puppy) to stay fit during the walk in the park, I did 60 press ups and 60 squats. So I knew despite my fitness and stamina taking a knock with chemo thatvI was doing one major upper body excercise and one major lower body excersise. Id split into 3x 20s...but I did it wirhout fail every day.
Finally, stay away from any negative people...even in the chemo ward! I sat down once next to a younger guy. The nurse came over to put the drip in and cheerily asked how he was. He said in a really mournfull voice.ohhhh Im not very well (no shit sherlock!) He said, oooh Im not sleeping well or eating and bla blah.
I picked my bag up and found another bed/chair ..with a beautiful view of St Pauls Cathedral, I was in St Barts. Id also decided from day 1 that I would smile every day through my treatment....ok it might have been a grimace on my last couple of chemos. But I was always cheerfull. I even joked with the nurses, asking if theyd got my rat poison ready!!
I also had two stints in hospital for seven days having Methotrexate as the tumour on my spine coukd have got into my spinal fluid...and that would be bad thing!
Anyway keep smiling and before you blink youll be looking back at your temporary illness...just as I am doing now. It might seem like a long journey now..but trust me it goes in a flash.
All the bes
Hi Verity, I see you are getting good advice already so just letting you know I had a large mass in my abdomen and disease in my small intestine too, after 8 rounds of rchop in 2009, here I am still posting and enjoying life.
How many rounds are you having the norm is 6 so after 2 rounds your nearly half way through if it is 6.
any questions just ask
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