O-cvp chemo starting soon

Hi Bonzo99 and welcome. There have been a few members been through O-cvp so let’s look for them to pick up on your post.

You can also O-cvp into the search tool at the top and have a look at older post and as always you can hit reply and post a question.

I have just finished 6 cycles of O-CHOP which is similar. I'm just having a final 2 cycles of Obinutuzumab alone. There wasn't much nausea, and the ondansetron given for the first 3 days of each cycle efffecively treated that. The main problem I had was taste disturbance, only in the last 3 cycles really. I'm retired so work wasn't an issue, but depending on what you do, you could probably work through most of your treatment.

I hope your treatment goes well.

Hi

I've just joined the group and seen your question.  I was diagnosed with Stage VI Follicular lymphoma in January 2020 and I started on O-CVP treatment in February 2020 and had it weekly for four weeks and then 8 sessions every four weeks.  I was one of the lucky ones I think, I had no issues and had no sickness and was remarkable well throughout and if I had of been allowed I would have been quite happy to go to work but because of the depleted immune system and our beloved friend COVID this was not possible, although I did recommence work from home in November 2020 after my maintenance treatment was cancelled in the September.  The only thing towards the end of the chemo was the tiredness and I am sure that many will have mentioned the odd kind of tiredness that you get but during the summer months, I carried on totally as normal in respect of the things I did, like the gardening updated the decking etc.  I live alone so going for treatment with my son or daughter whose ever turn it was felt kind of like a day out and if I was lucky we would have tea in a socially distanced pub on the way home (when it was allowed).  My treatment did last the day from 9 in the morning till around 4.30 in the afternoon.

Some may say I was a bit naive regarding my treatment, I just went along with what I was told and didn't delve too deep into what the outcomes were,  I remained positive all the way through and think that this helped.  I read the page in the book that the Macmillan Nurse gave me just in relation to my treatment and the rest I ignored.

Good luck with your treatment and if I can help any more just let me know.

Hi your information regarding your treatment has been so helpful. I am due to start O-CVP and having read from what you experienced is so encouraging as do feel extremely nervous. I too am retired and being older am very concerned about the toxicity of the treatment. Did you lose your hair? Is there anything I should ask for during treatment? Thank you for your help Vivienne 

Hi Clandon

I was very lucky I did not have any side effects during treatment I do have residual minor discomfort in my hands and feet because of the chemo, but this really is nothing.  I didn't suffer any nausea and I didn't lose my hair, it did thin a bit but I think it was only really noticeable to me. I didn't need to ask for anything during treatment, the nurses were fantastic and supportive and you can chat and just talk to them whilst your having treatment, we were also brought tea or coffee when I arrived, again at elevenses and offered a variety of sandwiches for lunch and afternoon tea or coffee, with a biscuit, all this still during lockdown by the fantastic volunteers.  When I started treatment I was lucky enough for one of the children to stay with me for treatment as it is a long day,  on my first time I took two of them with me so that when I was talking about my treatment day they could visualise where I was and my other daughter came with me the next time.  During lockdown of course only I was allowed on the chemo ward which was hard, although by this time I was in to my 6th or 7th cycle and I did get tired so I was happy just to read or doze.  One thing I wish I had know was that I could take someone with me for the consultation, the first time during the first lockdown I went in on my own and you don't really take in all the consultant says but no one mentioned I could take my son in with me, it was only because I saw two people going down the corridor which was manned to stop more than one going down at a time, I asked why they were allowed and was told it was because they were having a consultation and you could take someone with you, so after that someone came with me for the consult.  

I know you are going to be nervous, but please don't be, I have never met an unkind nurse and they will go through your treatment with you again and explain what is going to happen, also talk to your Macmillan Nurse, mine has been extremely helpful and supportive and keeps in regular touch.  I didn't have a Macmillan Nurse while I was having treatment but got in touch when the active chemo was completed and she has been very supportive with that sort of bereft feeling once your active chemo has finished, and my maintenance was cancelled due to COVID.  Although I am going to start maintenance chemo on Monday for two years.

I think that I was lucky, but there seemed to be only a few people on the ward that suffered with sickness and of course when you are being treated you do get your anti sickness meds and steroids before you start as well as your anti virals.  Our take home meds were brought to us by pharmacy during treatment.

Positivity is the key I think and the support of your family. Don't get me wrong it is not all terrific and I don't want to over egg the pudding, but hopefully you will react in the same way as myself.

Let me know if I can help any more. Being able to talk to someone going through the same thing would have helped me during active chemo.

Good luck and stay safe

Bramahall

Dear Bramahall

I cannot thank you enough for your kindness outlining what you went through during your treatment. It has made me feel more positive and able to deal with this. It’s so hard to accept you need chemo when you feel so well other than a few small swollen lumps. I have read into great depth about the treatment which is probably not a good idea but the Macmillan website is the most accurate and says you should always get a second opinion hence my consultant has agreed that I can see the Royal Marsden but they might decline during these difficult times. I have follicular lymphoma grade 3 but is indolent and slow growing and no B symptoms. As there are many sub types which at the moment is diagnosed by a pathologist I would like to have a DNA test which is the way forward and will determine my sub type more accurately although my consultant feels by scanning as well this is enough. Did you have that? 
Take care and I hope your maintenance chemo goes well.

Clandon

Hi Clandon

No worries, if my experience helps in any way then I am more that happy to help.  My consultant said to me that out of all the cancers Follicular Lymphoma is the one that messes with your head the most.  It sounds daft but I felt guilty because I hadn't had surgery, or any invasive treatment, I didn't need radiotherapy and I was really well, no sickness or hair loss  I did say to my consultant that I felt really well and felt that I was a bit of a fraud and he just laughed and said that it wasn't obligatory to have side effects.

My diagnosis is Stage IV terminal Follicular Lymphoma.  I haven't really had many tests other than the Bone Marrow one at initial diagnosis, which wasn't very pleasant and the usual PET and CT scans although my consultant did explain yesterday that these wouldn't be routinely done in future unless there was a reason as having them regularly wasn't good for you either so they have to weigh up the pros and cons each time.  I haven't had any DNA tests and for me to be honest I don't want anything more than is absolutely necessary.  To a certain extent I am a whatever will be will be kind of person and I leave it up to the professionals to decide what I need and I was not even aware there were sub types but as the treatment I have had to date has worked for me I personally wouldn't ask for a second opinion or to delve into what sub type I might have but can understand why you might want to.

Good luck with everything and let me know how you get on.

Living with an incurable low grade NHL does indeed play with the head.... back in 1999 when I was told that my skin CTCL was incurable but treatable although I would never be in remission was initially a challenge, more so as I could not Google it and information was not that available.

For a few years I had the word ‘terminal’ firmly in my head to the point I had all my affairs sorted... but these are on a shelf gathering dust now.

The further I went into treatment and indeed in Sep 2016 once I was told I was in remission for the first time in over 17 years I looked at my circumstances rather differently and this was promoted by my head Consultant...... “I expect that you will live the rest of your life with your cancer and die from natural causes rather then your cancer getting you”

I like that thought and I am sticking with it.

Hi, I completed O/CVP 9 months ago and was only sick once on my 2nd to last treatment. I was given anti-sickness tablets and was fine. I do not have maintenance treatment due to corona situation and possible threat to an existing heart condition. I have had full investigations on my heart and it is fine too. Good luck with your treatment, I sailed through it by keeping positive.

Hi Mike

You are an inspiration thank you for your story 

Clandon