Recent diagnosis of stage 4

Hi Again!  I can't believe that this time last year I started on the "journey of a lifetime"!! After 6 rounds of O CVP chemo, stent insertion, stent removal, numerous blood test, PET scans and Ultrasounds and X rays ( and a couple of dodgy leg aches after the chemo and steroids), I got into remission with excellent results, and started and nearly halfway through my maintenance programme with Obinutuzumab.  The NHS team I had at my hospital in Kent  have been wonderful and down to them they got me where I am today, I am happy to report I feel extremely lucky and extremely well, and back to how I was - (Minus my long hair)! The support network here has been invaluable and also the Lymphoma Action Group.  Having people respond to your questions, queries and doubts helped me enormously - Any  one on here I can help with just shout.  I will keep the odd update going, as it might help others going through the same kind of treament.

Hi Glann the Nelson Mandela quote that is part of my signature on all my posts - It always seems impossible until it's done is ever so true.

Our NHS often comes under a lot of scrutiny.... often negative but like you, I can't thank them enough.

Getting support is important, especially from folks who have walked the walk....... and it's great that you have found this community helpful and also the Lymphoma Action Group..... that just today reached 4000 members.

Please do keep looking in to the group and when you see a new members first post and you think "this was me not that long ago".... please reach out and give them support from your lived experience.

Keep well and love life.

Your Doctor should be giving you guidance.

Yep. I sort of hoped that it would be a simple "you need to do this". But in todays litigious society I assume they instead give you the valid options and then you pick the path. Gives him cover but leaves me a bit flumuxed.

Either way, I think chemo is the path now after doing what research I can and taking advice from a number of sources.

Hi Glann

I am a very new patient of low grade follicular lymphoma. I just had my first cycle of chemo done with CVP and obinituzumab (may spelt wrong) 

I’ve so much curiosity about the next 4 weekly cycles of the same. I would love to know more about the progress of this treatment and the side affects. Google has confused me so much with scary stuff written all over.

my doctor suggested the best available therapy as above. This is my third in hospital in kent where I am looked after so well. There are no reactions or side affects yet but may see in next few days.

best

jim

Morning.  Well firstly - please stay away from google!  We all do it, and drive ourselves mad!  I was on watch and wait for 6 years with low grade follicular lymphoma, until last October when bang - it all kicked off and a chemo path was suggested for me. The lymphoma was blocking my urethra and I had to have a stent put in for six months.  I started in hospital, for a couple of rounds, and I was in a good position, in that I did not have any underlying medical conditions, and I feel that helped me respond to the treatment very well.  I too, like yourself was very wary, scared and confused, after all having chemo is not a walk in the park for us all.  Having said that, I had six rounds of the 0-cvp and managed to stay on track with the treatment.  ie bloods have to be at an acceptable level to progress with treatment etc.  As for side effects, I am being truthful when I say, I got more side effects, as I went along.  They were, loss of appetite, hair loss  big time, my eyes were cloudy, and felt like I had a film over them the entire time, sickness, constipation/diareagh - all of which I had tablets for  although I never actually got sick, but they were all manageable but the steroids affected the mobility in my legs - so much so that it was truly an effort to walk.  I told my CNS team every time when I got something I thought they should know, and with my mobility problem, the team decided to reduce my chemo and my steroids - and that helped enormously, as my  hands and toes were getting that numbness/tingling feeling. I also had some fatigue which I know the walking out helped me, and you also do need to rest up. How did I cope?  I found this site and a very nice man, told me that no matter what try and move / walk etc. as much as possible, to strengthen my legs etc., which I did with the help of my supportive husband.  You may not experience any of these, as I have spoken to people who have said they just felt sick etc,. and the statement that everyone is different rings true. I lost quite of bit of weight quickly, and I did not like it, when I was getting weighed at the nurse clinic she told me to eat "rubbish" so with that in mind I ate what I felt I could at any time and felt ok about it not being "healthy" you do need to eat and drink plenty of fluids - I aimed at around 3 litres a day starting at 7am.

I don't know what was explained to you, regarding having chemo for Lymphoma, with me the stresses were on infection - (drove me a bit loopy to be honest) but I decided to keep a low profile from friends and family.  Yes they popped in with goodies etc, and wore masks, and so forth, a bit like COVID but I do feel that helped too, as I was on target to complete the course without getting any "infections"

Now, I finished chemo on 17th February this year - my haematologist told me I had excellent response to treatment.  I started on the maintenance regime of Immunotherapy with obinituzumab every two months.  I have been written up for 12.  I am on number 5 in December, with no side effects whatsoever.  I am back to full strength, put my weight back on,  doing schools runs, shopping, out and about enjoying my life again, I have also been on a 10 day break to Ireland to see relatives etc., I wore masks at any enclosed areas - like airports and taxis etc.,  I thought this day would never come, and it has, so my advice is to stick to your regime, do what you feel comfortable in doing - ignore Google and don't be shy in telling your CNS if you have any concerns, mine were wonderful.  I hope I have not rambled on too long - but that was me in a nutshell, others may not have had my experience.  Stay safe, and countdown the treatments!    Feel free to contact me again if you have any other thoughts.  Don't know if you ever watched Only Fools and Horses comedy?  THIS TIME NEXT YEAR......!!

Hey Glann

morning! It was a warm reply from your end at the very last day in hospital confused myself for the outcome as side effects. Such a brilliant long text that you have managed and I was overwhelmed. Thank you so so much!

I was discharged from hospital last night after 6 long hours wait for a bulk of medicines to carry with me and that was a bit frustration of wait. I could not reply to you yesterday I am sorry!

anyways now the fist O-CVP therapy has gone through very well without any side effects but felt tired and dizzy coz I was so sleepless after google made me crazy about side effects. Hospital staff was so wonderful and so warm that was such a lifetime experience. My consultant constantly monitored my updates and visited the ward daily that was such a boost to my moral.

I felt myself in angels hands no matter what others say about NHS but I am positive.

Now further 4 outpatient visits are due on weekly basis subject to blood counts before each cycle of O-CVP.

I kept so low profile that apart from son who was along or my brother, non of other family members have any clue what I’ve gone through! Coz my younger brother has been lost with cancer last year so it could have raised alarm of panic and wary. As a new on this site and new in this journey I’ve so much curiosity to see what others went through. Sharing stories and experiences does help a lot to the new patients as light in the dark ally. 

I wish you all the best and glad that you are back to your normal day to day life. Please feel free to contact and write that does give such a boost to the new comers.

TC

best regards

Jim

Hi Glann

Thanks for the detailed response here. I know it's directed at Jim but I'm very glad to hear of your experience as well. I started this thread as I'm about to begin chemo. Only found the cancer in July so very short watch and wait for me. My platelette count was dropping so they moved me up to chemo. No other issues so far other than the lymphnodes which I think were the cause of some gastric issues given their location. I have them both sides of the diaphram and the bone marrow biopsy showed 50% of the cells impacted. So quite advanced (stage 4)but I've been lucky in terms of the wider symptoms.

To be honest, really not looking forward to the chemo but hoping a full strength blast now will get me into a decent period of remission. I'm 54 with no other medical issues so really want to try to get some quality years with my wife!

Made the mistake of searching Google and that's what drove my anxiety. It paints a pretty bleak picture and my consultant wasn't really giving me any relief as I was getting quoted generic numbers on survival rates.

Great to hear that you're responding well to the treatment. I hope to be able to say the same later next year :-)

Hi Cormac, having been thrown into the situation none of us wants, we have to trust our medical team - Mike the mediator on here has said so many times, that there are 64 different types of Lymphomas - and the encouraging news is that it is treatable, and some of us will get into a long remission, so we aim for that.  The thing to know, as I do know, after your commencement of chemo - we are expecting bad things to happen - it didn't off course, our mind plays havoc with it all.  I am glad to hear you have no underlying conditions, that surely must make way for a good recovery.  If you  can just take each treatment as it comes, and make sure you check in with your CNS if you feel there is a problem.  It is the unknown, and now I have done it, it is not the unknown, and I am sure you will be saying same as me... "this time next year"  please feel free to contact me whatever, I know treatment for Lymphoma, may sound the same, but there are always variances. The time goes pretty quickly - I spent my time, moaning off course! crossword puzzles, resting up and getting out in the fresh air, as much as possible. My husband and myself played cards every couple of nights after dinner (just to pass the time, as I was irritable)!  I also did jigsaw puzzles which I hate!  Let us know how you get on.

Wow Jim, that was a long wait for medication!  I was very stressed when I saw the suitcase full of drugs!  But initially there are a lot, but it pans out down the line, and you get into a routine.  When I was in the hospital, all the drugs were given to me all at once in the morning and some in the evening - I continued with that - seemed to have worked for me. I take an antiviral, anti fungus every day and an antibiotic three times a week.  Initially it seemed like I was raiding the chemist shelves!  I had my chemo every three weeks - so you see, the chemo is different for us all.  Try and stay positive for the best part and keep your mind active too.  Good luck with your forthcoming treatments.