Hello, I am about to start RCHOP

Hi WinnieK and a warm welcome to this corner of the Community although I am sorry to see you joining us and to see you in the Lymphoma rollercoaster.

I am Mike and I help out around our various Lymphoma groups. I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

The good news…. yes there is good news in that unlike my types of Lymphoma…… your DLBCL being a High-grade non-Hodgkin lymphoma is very treatable and the nital aim is to cure.

There are indeed unfortunately Side Effects of Treatments and hair loss is one of the challenging ones….. I lost my hair 3 times due to my long treatment journey but like most of the side effects these are all temporary……. and the one mindset to keep clear is ‘if this is the side effects I am experiencing…. what is the treatment doing to my cancer’

R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had the big brother of R-CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.

My story is rather complicated See my story as I had to go onto have significant treatments mainly due to  me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 8.5 years out from my last treatment and turned 68 last Nov and I doing great.

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,

This link will help you get ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

You may want to check out the Lymphoma Action website. 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.

What hospital are you being treated at?

I have said enough, I am sure you have qu actions so do ask them ((hugs))

Hi Im sorry to hear that you need to join us but am sure that you will get lots of support from the forum.

My dad also has DLBCL it was found accidentally when he was rushed into hospital with hypercalcemia ,at the time it felt.like time went so slow waiting for biopsy and then waiting for results. But in reality it has been less then 4 weeks from first admission to treatment . 

Dad had his first R-CHOP on wednesday as an impatient and thursday morning they were doung it extra slow due to electrolite inbalance . He was allowed home thursay evening and he has had hardly any symptoms just loose movements in the bathroom. 

I understand that it  could get harder with accumalitive treatment but just taking it ine day at a time and at the moment he is better then he has been for months its like having my old pop back. 

Anyway just wanted to pop by and say good luck keep your spirits up and hopefully speak to yoi again soon  

Sarah 

Hi Mike, thank you for all that information. It’s amazing that you have had so much treatment and I’m so pleased to hear you’re currently well. Thank you for being part of this support group- it means a lot to people like me! I’m going to be treated at Warwick hospital. I’ve had a look at Lymphoma action and it’s really informative. I will work my way through their pod casts etc soon! 
Many thanks Kelly

Hi Sarah, thank you for your response. It must be a relief to see your dad getting the treatment he so needs. It’s brilliant to hear he feels better for it so quickly. As you say it could build over time but that’s a great way to start. My father is also ill With bowel cancer , which was diagnosed only a week before me. It’s been a lot to take in all at once. However, although I feel scared, I also I feel positive at this stage and hopeful that maybe the treatment won’t be as bad as I’m expecting!  K 

Hi Kelly WinnieK good that you have found the info helpful. It’s all a blur at the moment but once you get started the noise between the ears will calm down.

I also volunteer with Lymphoma Action and they run regular Support Platforms both for patients and family..... I highly recommend these groups as there is nothing better than talking with others who have or are walking the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Their Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support is open every week day from 10 till 3.

You are not far from the Maggie's Centre in Coventry……. these folks are amazing and support all the family.

Up in the Highlands where I stay people are happy to do a 3 hr round trip drive to access the support at the centre.

((Hugs))

Hello WinnieK

By now you might have had your first cycle of RCHOP; if so, I hope it went well and you’re doing OK.

Regarding the hair loss, I noticed a change in the texture of my hair around day 14 of my first treatment; it became much thinner and started coming out easily in the shower.

I felt devastated as I’d been growing my hair and it was shoulder length and thick. Rather than trying to cope with the stress of seeing hair loss every day, I got it cut short. I did ‘Brave the Shave’ and raised money for Macmillan. 
Today I attended a free online workshop run by Look Good Feel Better, a cancer charity, which was very informative. They run lots of tutorials and workshops to help people cope with the physical changes that come with cancer. It might be worth you taking a look.

They talked about wigs, care of them; scalp care; head wear (scarves, hats, etc); eye lashes and eye brows. I was amazed that there were 67 participants in the group. I am going to book some more.

 I’m a public facing role too. I’ve been off work since Easter. Did you know that you can apply for Personal Independent Payment if your pay is reduced, and you are unable to meet your daily needs ? Your specialist nurse can advise you and help you complete the form. 
I will be applying for it soon as I move to half pay at the end of September.

The biggest thing I had to adjust to was the fatigue, now I just listen to my body and rest when I need to. I’ve also gained a lot of weight from the steroids, I have an insatiable appetite and an unquenchable thirst. I try to walk for 30 minutes a day when I can.
What have you experienced so far and how are you managing ? Do you have family and friend support ? 

Best wishes 

Tess

Hi Tess, Thank you for your lovely message.

 It’s so good to hear your story. 

They look good feel better session you went to sounds great. I will look them up. It would be nice to meet other people going through similar things. Right now, my hair is shedding like crazy, All very weird! Thanks for the advice about PIP, I will ask my specialist nurse when I’m back from the next session on Thursday. I’ve been put on SSP which is way less than my salary straight away, so anything extra would be really helpful!

i’ve got myself an acrylic wig, but I feel strange about it. I went a bit mad and got a blonde ish one when naturally I have long dark hair! I could do with some advice on how to tame it.

How are you doing? Are you nearing the end  of your chemo? I will find out the results of my PET scan on Tuesday , it’s my first one as I’m newly diagnosed - so hoping for the best. Thank you for taking the time to respond. Sending you hugs.

Kelly