Transformed follicular lymphoma

Hi Peter, I will keep an eye on things here to as I pop in to the group when any NHL people appear what I did not share in the other post is I have known a few people go through this over the years and one that goes back to the 90"s and all are well and still in remission or cured depending on your point of view.

John 

Hello John, I'd settle for remission if cure isn't available LOL.

Hi I am going to tag parkrun mark as there may be a chance you are on the sameish road as him after Mark having a Bone Marrow Transplant yesterday rather than a SCT.

Hi again Mike,

Thanks for that

Just a quick update (copy and paste from the other forum)

2 days to go (sorta) and to be honest I'll be glad when its started, legs still the same so its obviously not an infection as I've had 2 days of antibiotics so far with no change. Gaining weight again because of the steroids and the armpit one is shrinking a bit, but the groin isn't.

Managed to get 2 short walks in, just shy of 2 miles, which I liked, but very tired when I collapsed on the sofa as the left leg hurt and I couldn't be bothered to try and sit down lol.  Drinking more as well, 3+ litres today, might well be 4 by lights out.

Making the most of the foods that come Wednesday I can't have, ie poached egg, stilton cheese, yes I know some would say I shouldn't now, but the hospital didn't say I had to when I asked.

I'll be back later in the week with an update.

Well I got back late last night, so didn't post then.

Had a good nights sleep after 2 disastrous ones (about 6 hours in total).

Arrived at the hospital at 10.45 on Wednesday, cannula fitted about 11.15, then a half hour wait to go to ward. They started on the Rituximab at about 4.30pm and this took 5.5 hours, then it was onto the flushes and chemo, which lasted another hour and a half. Was half asleep by then, but sleep eluded me for most of the night as lights going off and aon coughs and buzzers etc. so was up at 5am. Great I thought 5 hours to get ready before going home, hahahaha fat chance there, finally left at 16.45, mix up with tablets, change tablets, meanwhile I'm getting angry, but keep it to myself the staff are great its the chemist.

Doctor comes round to apologise, apparently they changed the steroids for the 1st 4 days to Methylprednisolone, an pale blue rancid tasting tablet, 10 a day for days 2-5, then back to the ordinary prednisolone, 6 a day for 3 days then the same in decreasing amounts, 5, 4, 3 etc.

One thing to be glad off is there are less tablets to take, but how I take them is different time wise.

How do I feel today, okay TBO, but my weight has increased again to 99.8kg., definitely this is the drugs causing it, so will be looking at more nourishing foods that fill me up faster and taking more walks regardless of the effort required.

Next week its back to my usual days, Tuesday for bloods and doctors and Friday for treatment, so hopefully I will see some of my former compatriots in the day unit.

Keep well everyone

In all the hospitals I’ve known, it always seems to be pharmacy departments who hold things up! 

Sorry it’s been tough, hopefully it will ease off after this

hugs xxx

Thanks Moomy,

Thats appreciated

Well I had another doctors appointment today with bloods, I'm not feeling so great as yesterday I overdid things but hey ho thats life

My appointment today was a bit mixed as well, new doctor (not keen on him one bit, a bit aggressive for me). Raised a few issues re swelling up around hips and legs which I think is water retention, but he was a bit to fast on the dismissive always interrupting. I have a short session on Friday, forgot exactly what as its not chemo anyway, then the following Friday I'm in overnight as it will take a long time I'm told.

I'm in 2 minds about having a word with someone about this doctor as everyone else has made time to consider what I feel but he's dismissive, should I or just hope for the best. Sorry to be a pain, but its how I feel.

Hi Peter, yes a little assertiveness goes a long way and will reduce the stress of not having answers to the questions buzzing your head.

My head SCT Consultant and Specialist Nurse always said that I knew my body better than any of them and it was important that I report everything and that I got a satisfactory answer for everything - regardless who the member of staff was.

So have a little word in the ear of a member of the team who you feel comfortable with.

When someone was ignoring me or not giving me an answer I understood I would hold up my right hand just next to my head and did not put it down until I was happy - they all got used to me.