First chemo done

Hi Jane

I finished my R-chop treatment in November and got told I was in complete remission in December, so I can relate to what you’re going through.  I would say just be kind to yourself, if you need to rest, then rest. Eat what you fancy and drink lots of water, that really helped me. 

My hair started coming out 2 weeks after my first chemo. I didn’t buzz my hair off in readiness for losing it and I think I’m hindsight I should have done as I think taking control of the situation is probably better, but each to their own.  There are loads of great wigs on Amazon and SHEIN if that’s what you want to do.

The injections are ok to do. Take them out of the fridge 30 mins before injecting, letting them get to room temperature helps.

I found R-chop very doable, I still worked full time (from home) and walked my dog daily. Felt a bit breathless from time to time and sleeping on the steroids was a bit disturbed but overall it was ok.

If you have any questions or if I can help in any way just ask. Also, this site is brilliant, the support I got from here was amazing as it’s full of people who know exactly what you’re going through. 

Take care,

Sarah x

Hi Jane Jane03 and a second welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 with a rare, incurable but treatable type of Low Grade Skin NHL Stage 4a (CTCL) so although my NHL ‘type’ may be different from yours I know this journey rather well.

Good to see that Sarah Sassy1234 has picked up on your post - talking with folks who have the treatment T shirt is very helpful.

Glad to hear that your first treatment went ok..... see this as the first step in evicting this unwanted squatter from your body.

The fear of the unknown is big going into treatment and often the first day passes with little or no drama..... some folks do have reactions but these can be dealt with effectively. A 7hr day for the first R-CHOP is about right and you will find the next one will most likely be done quicker as they always take extra care during the first treatment.

I had a diffrent treatment (R-EPOCH) and this had me in hospital for 5 days/nights on my treatment 24/7 for over 120hrs..... for each of my 6 cycles.... so 7hrs sounds like a blink to me ;)

Don't sit around fretting about side effects...... they may not all show their face. The hair thing is pants (granddaughters words) but do remember that this is all temporary and will pass...... keep your eye on the greater good in all this...... evicting that squatter. My treatment was full on so lost my hair within 10 days.

Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your 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 our immune system is at its lowest and there is an increased risk of infection.…… then your body recovers in time for your 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.

During your treatment it is very important that you are aiming to drink 2 litres of water each and every day as this is the main tool you have to protect your Kidneys by flushing out the chemo toxins and keeps your body hydrated as these treatment can dehydrate you badly.

A BIG yes to the 'big bag' of meds - do make sure you take them exactly as shown on the labels especially the ani-sikness meds.

Most folks will have the injections (G-CSF Injections  - FILGRASTIM or similar) these are designed to wake up your bone marrow and get your blood counts up as the treatment can kill off the cancer cells but also good cells as well. This should help you keep away from infections. I also had them for a few days after each of my 6 main cycles but was also on them each day for 4 months after my second Stem Cell Transplant.

One problem folks report about the injections is bone pain but Had no real issues with this. I was told that this was down to my team prescribing Piriton or Clarityn Antihistamine as this bizarrely stopped the pain developing, these were taken as per the dose instructions - worth talking your team about this as not a lot of hospitals do this.

What actual type of NHL do you have?

You can hit our community names and see our stories.

Always around to chat and answer questions ((hugs))

Thank you Sarah for your reply, amazing that you carried on working, well done you. I'm planning on getting a dog later this year and I'm hoping the walks and fresh air will really help me.

I think I will buzz my hair off as, like you say, i need some control over it. I've bought some hats and ordered a wig but feel really self conscious about the whole thing.

I'm feeling fragile and just seeing how my body reacts to it all at the moment.

Your reply has really cheered me up and I hope you continue to recover well xx

You’ll be fine, just take one day at a time and before you know it the treatment will be done.  I found my tastebuds where off for the first 10 days after my chemo, everything just tasted a bit yukky, but I found certain foods better than others, spicy and citrus were good. Also, drink lots of water, it really does help with flushing everything out.

Regarding wigs, I also felt self conscious at first, I think that’s only natural, however, I found one similar to own hair (but better!) and have stuck to wearing that. Although my hair is growing back thick it’s not long enough to go without the wig yet so I’m still wearing them.  I’ve got ‘going out’ wigs too! 

Take care and look after yourself.

Sarah x

Hi Jane

Injections were fine sometimes a little bit of a sting sometimes I didn't feel them.

Once you get past cycle two you will know what to expect and it then just becomes a bit tedious. Keen to get to the various milestones and check ups to know things are working but a lot of waiting is unavoidable. Your body is getting a battering each time with the chemo and needs the a bit to recover before you start the next cycle,

Post cycle two I was aware my symptoms were disappearing though I didn't have that many to start with. In hindsight I should have gone to my GP a bit sooner but really didn't feel i was particularly  ill.

One thing to add to Mikes advice is keep a notebook / diary of things you are experiencing and let your teem know anything that is concerning you. They have lots of options re the various side effects that some people get but they need you to tell them you have an issue,

They gave me a strange green mouth wash the helped me for a couple of days each cycle when I had a mouth like the bottom of a parrots cage. 

Its doable it's not easy but doable 

Hi there, thanks so much for your really helpful reply. I have a B cell NHL, that's all I know at this point. I had a PET scan and bone marrow biopsy just a few days before my first chemo session so still waiting for results of those. 

I managed the injection and am taking the meds. I think it's a case of usually I'm a brave character but there's only so many individual things I can be brave about in one week.. Its been a tough one.

Thankfully I'm not feeling too bad following first chemo. I actually cooked dinner last night and watched a film with my son so that felt good. 

Great to hear others advice and that this whole thing is pants. 

Best wishes

Haha, my mouth feels like the bottom of a parrots cage, glad that's normal at least. I didn't feel that ill either before diagnosis and I kept thinking they must have mixed up my results with somebody else's. They've told me i had low grade NHL which then transformed into hight grade over Christmas which is when I developed a lump in my neck. Apparently I've probably been living with the low grade for years without knowing and they can only treat the high grade more with the chemo.

Thanks for the advice, i really appreciate it xx

Good to hear things are going ok. You may want to have a look at the Lymphoma Action website.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable Lymphoma information, practical information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.