Hi Pdog

Welcome to the site.

As for R-Chop been there and done that.  Have to say I did not find it too bad at all although I know many who found it hard to deal with.

For the first treatment I had a couple of days when I did not feel too good and about ten days where I had no appetite and everything tasted like cardboard (not that I have ever knowingly eaten this).  As the treatments went on the days of feeling not so good did increase but the days of no appetite and everything tasting like cardboard did decrease.  With fine motor skills I had no problem at all .

You will feel very tired on the days you get treatment and for a few days afterwards so you might well need to arrange some additional childcare.  I was lucky in that my daughter was away at Uni.

Everyone tends to react differently so there iis really no knowing how you will find it. 

My treatment started back in January and was finished in June.  I was back at work part time at beginning of June and full time in early July.  When I was first diagnosed it seemed endless until treatment would be over but I was surprised at how quickly the end of treaetment came.  I had scans after cycle 4 and again at the end and they found no trace of the disease at all.  I know I have been extremely lucky.  One of my fellow sufferers who received treatment at the same time as I did is still on what they call maintenance treatment (just one of the drugs) for the next two years.

If you have any other questions do not hesitate to ask although it mght take a few days for me to reply as i am so busy that I do not get time to login as often as I sused to.

Very best wishes.

Gill

Hi  Pdog, good to make contact on this site, people are very good and we are all in it together!!!

I had my first treatment of R-CHOP yesterday and had no idea what to expect. Just to fill you in on my diagnosis, I have Follicular lymphoma, stage 4 and grade 1. Was on watch & wait for 6 months after diagnosis, then I started to get more lumps in neck, armpits. Then my spleen became very enlarged so they decided treatment was needed. They thought the cancer had transformed to high grade but the PET scan did not back this up, so hopefully still low grade which can be controlled but not cured with chemo.

Anyway, had 1st treatment yesterday, it was a bit of a roller coaster ride, high as a kite then sleepy in cycles all day, it's a long treatment 1st time round, 9am -430pm in out patients. All drugs went through ok till they upped the Rituximab pump, I got an allergic reaction - itchy nose to itchy mouth to tight chest, 2 lots of (I think) anti histamines sorted it and they started the drip again with no more problems, I was in there all day. I came home feeling a bit dazed!! but was very hungry and ate. I managed to sleep ok till I woke feeling sick, immediately took anti sickness meds which stopped the feeling in 10 mins and I went back to sleep.

Today I'm back on a high dose of steroids and feel buzzy but ok, I looked after my 3 year old g.daughter ok, off sick at the present.

I was also warned about the nerve damage, I think they will keep a very good eye on you, I can't remember what they said about how they could treat the damage / what they would do, I hope it goes ok for you.

I'll tell you how it goes for me.

I wish you all the best

Sara

Thank you Sara and sorry to hear of your diagnosis. How are you feeling now?

I don't have a diagnosis yet but it's my lungs that are the problem. Although I had a pet scan a couple of weeks ago that showed a spot on my liver so I'm now waiting for another biopsy.

Are you having chemo every 3 weeks?

Hi Pdog

This is day 5 after R-CHOP. Nausea gone, constipation bad!!! Steroids keeping me buzzy through the day and they can stop me thinking clearly, which I really don't like, but have managed to sleep at night. They have reduced their efficacy as the days progress, so I get tired earlier each evening but I'm very pleased to sleep, I think it's a big problem for lots of people. Now on a reduction for 4 days then off till next treatment.  My mouth is ok, a bit dry but no ulcers, no tingling in fingers. Appetite is very good! Not so bad.

I'm ok so long as I pace myself and in control of what I have to do.

Yes, I'm having chemo every 3 weeks. I see consultant on Wednesday for bloods and just to see how things are going. After 2 lots of chemo I will have another PET CT scan to see if this is working, I think it is because my spleen is definitely more comfortable and lumps in my neck have reduced.

I found it hard going waiting for scans, biopsies and appointments, I feel for you and hope you get your results soon.

Take care

Sara

Hi Sara

How are you feeling now?  Good news that you are feeling more comfortable.  Have you had any hair loss yet?

I start my chemo on 24th. Bit nervous but keen to get going in a way.  It's taken a long time to get a diagnosis so good to finally have a treatment plan.

I've been taking steroids for awhile now and I've been really lucky with side effects so far but I do struggle to sleep when I'm on a higher dose. Also piled on loads of weight so I'm hoping the chemo will reduce my appetite - there's got to be some advantages!

Hi

I feel fine today and have done so for several days. I felt my worse when steroids stopped and this lasted about 2 1/2 days, lots of stomach aches, terrible headache, bone ache, unable to sleep, as the days  progressed I've felt better. So, really only "ill" for 2 1/2 days. I go to bed early - 10pm at the latest, good sleep helps, also I was feeling very tired, this has decreased the further away from "ill" days.

Yes, may hair has started to fall out and quickly now! I have a wig sorted, just need the fringe cutting a bit. I had my hair cut short last month which helped the transition. I have tingles in my finger tips, this has improved for a couple of days, it was uncomfortable for about a week. My appetite has been good most of the time, only off food when "ill". I  lost a lot of weight and am not putting it on even though eating loads!! I think a lot of people go off food, but not me.

I start the next round on Tuesday.

Just wondering what your diagnosis was? Hope you are ok

Best wishes

Sara.

Hi Sara

I have Lymphatoid Granulamatosis. It is very rare and affects the lungs and sometimes skin (but not in my case). My doctors don't know much about it because there are so few documented cases and have said it is a 'grey area' as whether it is officially a cancer. It can be treated very effectively with steroids, which I've been taking for a good few months now. They've been controlling my symptoms well enough but not the disease; my lungs are very inflamed and the doctors feel chemo is the best course of action.

I'm not having rituximab on my first cycle because they are worried it might exacerbate the inflammation so my first treatment should be ok and then I'll be there all day for my second one. I'm having another PET scan after my third cycle so they can check it is working. 

I had my pre-assessment last week and got all the info about wigs and have bought some pretty scarves. I'm not really sure how I feel about the hair loss really.

Hope your second treatment goes ok tomorrow.

Hi  Pdog

Sorry not to have got back to you earlier but I was in hospital for a week with an infection, I hope it does not happen again! Starting to feel better now.

I hope your chemo went well? I started to lose my hair noticeably the week before 2nd chemo and it continued to come out in handfuls - hair everywhere. Right now I still have patches - not attractive and will be glad to see the back of it!

I went down hill quickly when I came off steroids post chemo, both times I felt ill and this time an infection on top - chemo is a double edge sword!!

Take care

Best wishes

Sara

Sorry to hear that Sara. Glad you are on the mend now.

I had my first chemo yesterday and the actual treatment wasn't too bad but I have been feeling sick a fair bit, although the tablets they gave me are helping. Also very tired, despite the high dose steroids. Have a horrible taste in my mouth all the time and feel quite thirsty and have a headache that comes and goes so trying to drink plenty.

My eldest daughter was sick in the night last night and has a high temperature - typical!  I'm staying with my dad until she's better to try and avoid picking anything up. I've been a bit emotional - had a few tears after my treatment yesterday and been feeling very down today. Probably down to missing my children - I've had a few spells in hospital over the last year so I don't like being away from them. Hopefully she'll be better tomorrow and I'll be able to go back home.

I think my husband is dreading the hair loss more than me!  He hates the amount of hair I shed now so goodness knows how he will react when it all comes out! 

Take care, I hope your next treatment goes well and the aftermath is less eventful. X