Hi Sara,

So glad that you are feeling a bit better. I have never had reiki, it sounds nice, but I used to do yoga at school. We had to do half an hour every morning before breakfast! It was a ballet school. I can still remember trying to teach my Dad some of the things such as tree etc but his balance was not very good and my Mum used to laugh herself silly!!

Yes I find sleeping hard on steroids and the sleep I get doesn't seem to do me much good.

I always feel when I have been attached to a drip all day when the take out the canula that I have lost something! You get so used to trundeling the machine around with you.

I hope all goes well on the 23rd.

Best wishes,

Christine.

Hi Christine, just had my PET scan results and they seem to show that it has not transformed, just grown quick in the spleen plus more lumps in the lymph nodes and bone marrow involvement, all appears low grade. He will continue to treat with R-Chop from next week. I'm still getting my head around it! I asked if it was good or bad news - he was not sure, time will tell.

He has decreased steroids which is good, should have better sleep, they have reduced spleen to 6cm enlarged from 11cm enlarged.

Best wishes

Sara

Hi Jill - I have updated post to Christine. Hope your results are good re bone marrow

Take care

Sara

Hi Sara,

I would take the "still lowgrade" as good news if it were me, as from what I have read " transformed" is never good news.I know I was very relieved[when the path lab came back with that result for me. I am still not sure whether my consultant just didn't want to completely accept it or not, the pathologist and my consultant are both lymphoma specialists, and you know what I was told about lymphoma specialists! Very good knews about your spleen, I know I felt a lot more comfortable when mine subsided.

We are off for a few days in our camper, back next week for clinic and then retuximab appointments.

Enjoy your better nights sleep.

Best wishes,

Christine.

Hi Christine, thank you so much for your post, I will definitely take your advice and take this as good news. Have a great weekend, - now off to cook a load of lovely vegetables!!!! 

Best wishes

Sara

Hi Sara,

We were back from our travels last night and had a really nice time. I believe you start your RCHOP today, I do hope everything goes well for you, I will be thinking of you.

Best wishes,

Christine.

Hi Christine, great to hear your break in your camper was good, they are a good idea I think, I hope the weather was good for you.

First treatment was a bit of a roller coaster ride, high as a kite then sleepy throughout the day, wow those drugs are strong. All went ok till I had the Rituximab, they started slowly, on increase I began an allergic reaction, they stopped medication and gave 2 lots of antihistamines then the rest went through fine. I felt dazed for the evening but did manage to sleep, woke in the middle of the night feeling sick so took anti sickness meds and the feeling went away within 10 mins, so ok.

Now back on the steroids so a bit buzzy again!!!! So far, not as bad as I anticipated. I see the doc next week for follow up and then next one is 14.10.14. I'm going to keep the yoga up twice a week as it suits me well.

I was just wondering what your maintainance therepy is, do you have tablets or is it IV? I don't know whether they will offer it to me, it has not been mentioned to date but of course it's very early days.

Keep taking care

Best wishes

Sara

Hello Sara,

So glad you came through your first treatment without too much drama, I too had the rash and temperature the fist time, but I didn't tell you before that the first night after RCHOP I was viotently sick most of the night and had to have the out of hours doctor visit to give me an injection. Most people don't have such a bad reaction so I didn't want to worry you!

Maintainance R is given just the same into the vein every 8 or 12 weeks for 2 years once you are in remission. The Scottish Consortium passed this for use about 4 years ago, but I don't know about NICE for the rest of the UK. I have two treatments left now, one next week and one on Christmas Eve of all days.

Back to being practical, has anyone mentioned hair loss to you and do you have any head scarves etc? I ask this as when my hair began to fall it was alarmingly quick. Macmillan have a very good booklet on hair loss with a list of websites listed to buy head gear at the back. I found it very helpful. I left it almost too late to get wig and things as on my previous RCVP my hair loss was very slow and not complete, but CHOP is different.

Best wishes,

Christine.

Hi Christine - thank you for your post, the sickness sounded awful and frightening at night. I'll have to find out about whether the maintenance R is available, I see a nurse at a cancer charity who helps sort out the best treatment and whether it's available on NHS, they also advocate for patients. I need to make an appt' with her so she can explain the PET scan and I'll see her as necessary so will ask her about R maintenance.

I have a friends old wig - luckily same style as my hair! Also have wig appt' etc booked. They did warn me the hair loss is certain and quick, I just washed it and some already down the plug hole, will need to get it  cleaned out (might be normal loss at present!!) I've had it chopped off anyway so not long hair coming out.

I find the steroids difficult, they make me buzzy if all ok but anxious if I'm worried and I'm having problems with work pay - it's a very long complicated story which I thought was resolved before I went off sick, I'll need to contact HR again.

On the very good side I slept really well last night, the steroids calmed down by 10pm and I slept till 0545!!!!! I took them again early so they go by bedtime!

Best wishes

Sara

Hi Sara

Gosh, you really don't need anything else to worry about at the moment. I do hope your work pay problems resolve themselves quickly., the steroids don't help with calm thinking do they! I was half way through treatment when we deicovered someone was planning to build a huge windfarm meters from our garden, we are still fighting it. If it goes ahead it will render our home unlivable in. At the same time another company was going for permission to build another one on the hill over us where our water comes from, rendering that unuseable, ho hum! I guess it has taken my mind off FNHL!

I hope you continue to sleep well and not feel too bad.

Best wishes,

Christine.