Hello Shammi,

It sounds like your mum went through so much and had such strong reactions to the treatment it must be a bit of a contrast for you to now go from supporting your mum through this intensive treatment to being told that you need to watch and wait. I am sure she is in good hands though with her medical team and that they will be monitoring her regularly. We have some information on our website on treatment for high grade Non Hodgkin Lymphoma here which may be of interest to you. I hope you will meet others on the forum who have been in similar circumstances. [@EmilyS]‍ might be a good person for you to talk to here as she is currently in remission for NHL. I am not sure whether she has exactly the same type of lymphoma as your mum but as you can read here , she has also had R-CHOP treatment.

Those are obviously worrying times for you but it is important that you find time to rest and look after yourself as you are bound to feel awful if you are sleep deprived at the moment. I hope you can sleep better soon and if you see you are still struggling with insomnia, do mention it to your GP who may be able to help.

Keep in touch and let us know how things go for you and your mum.

Should you need to talk to our nurses about anything, they have a free helpline that you can ring on 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Shammi,

So sorry to hear about your mum and thanks to Lucie for tagging me.  As she mentioned, I was diagnosed with follicular lymphoma stage 2/3 last October and completed 6 rounds of R-CHOP from December to April. I was in remission though afterwards, but I had to have treatment as my follicular had transformed into DLBCL - as it often does. 

I didn't have the same bad reaction to the treatment but it wasn't easy. 

I have been told repeatedly that lymphoma is very treatable and in fact, the more aggressive it is, the more curable, but I'm no expert and don't know your mum's exact situation of course.

While I can't be more of help than my own experience, please do let me know if you have any specific questions or want to talk - I dont' get on every day but here if you do want a friendly ear...

Sending positive vibes,

Emily x

Hi Emily, 

Hope you are well and thanks for your reply. I’m glad you are better after your R-CHOP chemo for NHL. Can l just ask what stage was your lymphoma diagnosed at? 

Yeah unfortunately my mum was unlucky and had really bad episodes following the R-CHOP she got ill after the first one and then stayed in hospital for around 9 days and then the Doctor lowered the dose for the following 3 she still got ill but not as bad as the first one. She had a 2 month break as well after 4 rounds then the chemo regime was changed to R-CVP. 

Thats what l have read too that this type of aggressive lymphoma DLBCL is treatable but for some reason the chemo hasn’t melted it away as we thought it would. 

Were seeing the Consultant on 7 Aug it’s just a worrying time as l don’t know what else they are going to do, we haven’t been informed as yet as the MDT hadn’t gone ahead when we saw the Consultant on 26 June. 

Its good to hear that you have made a recovery from this horrible illness though, it must have been awful for you to go through all that it’s really difficult takes it toll on a person. 

Love and Best Wishes 

Shammi XX

Hi Lucie, 

Thanks for your reply to my post about my mums lymphoma treatment. Yes it’s just been a really difficult 17 months with all this intensive treatment and still no cure as yet. 

We are currently waiting to see the Consultant again in early August and l just hope they have some treatment plan for her so that we can move forward with this and get it under control as it’s a high grade lymphoma. 

I’ve found the Cancer Research website really useful and been on regularly reading different things. I just hope that one day there will be a kinder treatment for Cancer than chemo it’s harsh and it doesn’t always work all the toxicity takes it toll on a person.

Thanks for putting me in touch with Emily l think it really helps to share experiences with others who are or have been through a similar experience as they are the only people that can understand how it feels. I just hope things get better for my mum and she can have some other treatment to control the lymphoma. 

For the time being all we can do it wait l guess until we go to the next appointment. 

Kind Regards 

Shammi XX 

Hi Shammi,

I was diagnosed at stage 2/3 - they weren't 100% sure of the stage, but it had definitely spread to my right tonsil.

They may change up your mum's chemo and perhaps consider a stem cell transplant. I know those are my options for when I relapse (which I'm likely to do at some point).

Stay strong...

Emily x

Hi Emily, 

Good to hear from you again, yeah scary getting a diagnosis like that ah l see it had spread to your tonsil my mums is in her thyroid gland. 

I don’t think they are planning to give my mum more chemo from what the Doc said last week with her getting really ill last year, but we’ll see. Hopefully you won’t relapse Emily just keep positive and yes we will keep strong you keep strong too, have good days and bad days 

Shammi XX

 Hi Shammi,

So sorry to hear your family have been through all of this. I just wondered how your mum is now?

my mum has just been diagnosed with high grade, stage 4 b-cell lymphoma. It’s in her thyroid and liver. She is starting treatment right away so I’m trying to stay as positive as possible. 

Kind regards,

vanessa