Hi everyone,
My mum started chemo this week and had her first cycle of Pola R-CHP. Luckily she's had no reactions and so far (day 3), feels completely normal.
Has anyone else had this chemo and also, is it normal to not have any reactions? Luckily, she 'felt' healthy since first being diagnosed with Non-Hodgkin lymphoma 4 years ago, but recently found the low-grade had changed to high-grade after discovering a big lump on her neck.
The reason I'm here is because we invited her to stay with us throughout her treatment so we can look after her. But she wants to stay in her own home and expects us 3 children to take turns living with her. She said the doctor said she needs a carer with her 24/7. Is that correct - even is she's not showing any symptoms now?
My husband and I have a big house with a spare bedroom, and a garden she can go out in. Her house is dark, and cluttered with dog stuff as well as my dad's stuff who passed away 7 years ago. (She left her dog with a friend for the course of her treatment). My sister has 2 kids - the younger one is 13 so still at school.
Basically, my sister and I can't do much/any work if we move in with her but my mum refuses to come and stay with me which I find unreasonable.
Of course, we love and want to take care of my mum and have tried our best since dad passed away in 2018, but she's been using that as an emotional blackmail ever since. We are not allowed to have our own opinion that differs from hers as she immediately shouts and begs for 'kindness and compassion'.
If we answer back, she says really hurtful things and told my sister she caused her cancer from giving her stress which I couldn't believe - but we try to forgive (hard to forget).
Anyway, as she is feeling 'normal' now, do you think we should give in to her demand on pausing our lives and taking turns to live with her? She has the option to stay with us as she's been retired for over 15 years but refuses to give up her home.
It's really stressful and sad that she can't see we're trying our best to help her, yet she makes us feel guilty for not doing 100% what she wants 100% of the time. Before she used dad not being here as an excuse/reason, and now she's using her illness to get whatever she wants.
Sorry for the long post, but it's really stressing us out. Oh, we have a brother who's only one year younger than me but my mum doesn't expect (hardly) anything from him.
Thank you for any advice and have a lovely day!
Hi Sunseeker and a warm welcome to the Community although I am sorry to see you joining us and to hear about your mum.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I do see you have put up the same post in the general Carers only group so
lets see what replies you get…… but there may not be anyone caring for someone who is on Pola R-CHP.
To widen your search for support you may want to also join and post in our dedicated Lymphoma Groups ……..
General Non Hodgkin's Lymphoma
…… select the group depending on what type of High-Grade NHL she has.
I will say that back in late 2013 till April 2014 I had 6 cycles of R-EPOCH…… a much more aggressive treatment compared to her Pola R-CHP…… and I had no real issues and this was with each of my 6 cycles having me in hospital 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs each time.
Our second granddaughter was born during this treatment so my wife went down to be with our daughter and granddaughter for 10 days and I was perfectly fine by myself.
I will keep an eye open for you in any of the Lymphoma groups ( I can’t post in the Carers Only Grouo) so can give you further help.
Hi Mike,
Thank you for your message, and for all the information.
I'm very sorry to hear that you had two cases of lymphoma and went through intensive treatment. Are you completely cured?
From what I understand from attending mum's appointments is that her high-grade lymphoma has a 50-55% chance of cure but she still has low-grade lymphoma which are incurable. That's why she was on 'Watch & Wait' for the past 4 years before they found out the high-grade lymphoma after mum requested a biopsy several times.
It is also encouraging/reassuring to hear you experienced no major issues despite going through 6 cycles of R-EPOCH. My mum's Pola R-CHP also has 6 cycles but apart from the first cycle requiring 2 days of infusion this week (to test the drugs gradually), the next 5 cycles are 1 day of infusion at the hospital.
So I really hope that she will continue to not have any bad side effects.
BTW, I spoke with one of the clinical nurses this morning who said she does not need 24/7 care, especially as she's feeling perfectly normal at the moment. She said the doctor would either keep her in the hospital if she needed palliative care or ensure she has 24/7 support before releasing her after the infusions.
When I told her this after my conversation, she said she must have been confused and it was another ex-camcer patient who told her she needs company 24/7.
Basically, she doesn't want to move in with me but expects me or my sister to live with her without concern for our jobs/children/family.
Keeping my fingers crossed that she will continue to feel 'normal', and I do hope you are fully recovered. 
Take care!
Hi again Sunseeker and sorry for the delay in getting back to you…… but we are actually on holiday in Malta so it’s been a long day 
My 25+ year story is rather complicated (See my story) due to having the 2 types of rare T-Cell NHL at the same time but I am over 9.5 years out from my last treatment, I turn 70 at the end of this year and I doing great.
The word ‘cure’ has never been used…… it is actually rarely used for Lymphoma's, but the longer you go post treatment the better the prospects…….
My low-grade is seen as incurable but it’s fast asleep so I won’t be going around kissing princess’s……… and my Cinsuktant is optimistic that my high-grade may not return.
The amazing thing is…… this is the first time in many years since we have been out of the UK on holiday….. so when I got our travel insurance, as I am over 5 years since my last treatment the insurance companies say I am cured !!!!!!
Are you in the UK?
Hi Mike,
I hope you're having a wonderful holiday! I went to Malta over 10 years ago and loved it.
It's great to hear that you're feeling great as you reach 70 later this year - a success story! It sounds to me like you're as 'cured' as can be, especially if your travel insurance company deems so! 
My mother was also told this chemo treatment will only (potentially) cure her high-grade lymphoma not the low-grade, but your case is reassuring.
Yes, I'm in the UK (London).
Take care, Mike!
Hi again Sunseeker during my various weeks in hospital I meet folks in there 70s and 80s going through the same-ish treatments as your mum and even now I bump into them around Inverness and they are getting on with life.
The various Lymphoma groups and Carers only group on this community can help…..
I asked if you were in the UK as you may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment……. and they have a much larger community.
They run various Support Platforms…
I highly recommend these as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same support journey……. Especially their monthly online zoom group for Family, Friends and Carers.
They also have a great Buddy Service where you or your mum can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((hugs))
