Hi Sara,

What a pair we are! My temp spiked at just shy of 39, low blood presure and high heart rate, like you iv antibiotics and flued but thank fully no blood tranfusion. You really did not have to do this in sympathy with me!!!!!! This is the first time I have had anything like this and was amazed at the speed at which blood tests and treatment started. The shakes I have been told are called rigours, this is what I was doing.  I have no idea if that is the right spelling as I have only heard the word spoken in the local Scottish accent.

Anyway the main thing is we both seem to be on the mend. What a good thing you had your mother and sister  coming to stay, I had to worry about the state of the house all the time with my husband in charge! It wasn't too bad really when I got home. He was getting worried that the burger pack was running out!

I do hope you continue to feel better and all goes well with the scan next week.

Very best wishes,

Christine.

Hi Christine

Sorry I did not reply earlier but was waiting for PET scan results then for the site to be back on track. Well, I had chemo last week, no problems. I asked for results and they are - partial response with persistant active cancer, deauville score 4. The dr said to remember that the scan showed improvement. She also dropped into the conversation that they were now unsure as to whether it had transformed!! I was shocked as was told by Professor that it had not. She went on to say I will have another scan after 6 rchops then may need stem cell transplant or put back on to watch and wait (anything else in between I guess) Not what I was expecting!! Took a few days to get my head around it.

Just wondered what you thought - or anyone else reading this.

I'm back to not looking ahead too much, will have to wait and see!!

Hope all ok with you

Best wishes - Sara

Hi Sara

Nice to hear from you again and that you are coping, I was wondering how you were. I have never had a PET scan, only CT ones but after only two CHOPS seems quite early as up here the protocol is to have one after three or four and one after six. I would think that the improvement you will see after the next scan will be greatly improved on this one. With regard to one doctor saying one thing and another saying something else. I was put in mind of when I was on RCVP eight years ago. I had my midway scan and when I went for my chemo a few days later my consultant was on holiday and one of the other doctors was on duty. She duly told me the results which showed a good improvement but as one of the nodes was still large she said I may need eight not six cycles of chemo. I was shocked and depressed at the thought. Three weeks later having my next chemo my own consultant was on duty so I asked him about this. He seemed somewhat annoyed and said that there no reason to believe that this node would not be normal after six cycles and that everything was just as he expected it to be. He was right and after six cycles I had a complete response. After that rather long winded story what I am trying to say is ask your own consultant what plans he has as doctors on duty do not always have all the facts. No one has ever mentioned the possibility of a stem cell transplant with me and I have only heard of them in conjunction with high grade lymphomas. I did know that the plan for R maintainance after chemo was the treatment plan this time from the start.

I think you are right to just chip away bit by bit and not look too far ahead it's what I do. The only time I started looking into the future was when I was told that I didn't need to go back to clinic for a year and 5 months later I was back with a relapse, that showed me!!

Keep well and best wishes,

Christine.

Hi Christine

Thank you for your reply and wise words. No followup treatment plan was talked about with my consultant, he is always careful not to give false hopes / worries but works on the tests and how I feel in myself to determine what to do and takes it stage by stage. I'm guilty if looking ahead and assumed / hoped the Rituximab maintenance plan would be next. I want to take charge of it!!!

I have my last rchop on 6th Jan, so not too long to wait. I must remember the treatment has responded and as you say 2 treatments is only a 3rd way through. I need to go to the meeting after the last PET scan with an open mind, prepare for the worst is best for me. I won't get into worrying about it but I don't want to be shocked either.

Hope all is ok with you? Did you meet with the wind farm people?

Best wishes

Sara

Hi Sara,

The 6th Jan does not seem too long does it, how time flies. My last Retuximab is on Christmas Eve! Of all the lovely days to be in Hospital! Then another scan and hopefully, if all is well, back on to watch and wait.

I think glass half empty is a good defence mechanism, as hopefully that way we will be pleasantly supprised. When is your scan meeting?

The meeting with the "windy" people had to be postponed as I was in Hospital at the time. They phoned this morning to see if they can come next week. Something else to dread! We also have a meeting with one of the other firms who want ro build on the hill at the back of us. They have reduced from 19 to 11 and have removed the 3 that would have cut off our water supply, but they are still very close and there is another access problem for us with this one as well. Ho hum!!

I hope you are keeping well,

Christine.

Hi Christine

I hope all is well with you.. Sorry to have taken to long to reply but my sister has been here, which was lovely as I don't see her often.

Time does seem to be going quickly, can't believe the last chemo is early January, it's good to have an end in sight. I think my scan meeting will be the end of January, I'm not thinking about it till after the scan, I don't want to get into guessing the outcome,  I'll prepare for the worse though.

What a pain your rituximab is xmas eve, not want you want, do you have a scan after? Fingers crossed you're on watch and wait after all this....... endlessly.

Good luck again with windy farmers

Best wishes to you - Sara

Hi Christine

I hope all goes well for you tomorrow and the Rituximab doesn't effect your Christmas too much.

All ok with me at the moment, I'll be so glad to have the last chemo on 6th Jan and would really like to return to work in March if all ok - fingers crossed for both of us.

Wishing you a merry Christmas

Sara x

Hi Sarah,

Lovely to hear from you again and thank you for your kind wishes, I have meant to post to you but life has been a bit hectic for the last few weeks. Not least with a dear friend of mine being diagnosed with pancriatic cancer. There is always someone who is worse off.

I am busy doing all the things I would normally do on Christmas Eve today, so tomorrow afternoon I can just sink into a chair when I get home! Your last chemo is getting very close now, so as you say fingers crossed this will be the last for a while for both of us.

A very happy Christmas to you and your family

Christine x

Hi Christine

I hope all is well with you?

Just to let you know - I had my scan last week and results on Wednesday. Very good news, a complete response to treatment, grade 1 !!!! none left!! Now on maintenence R for 2 years and will go back to work on 2nd March. Long may it last.

Best wishes

Sara xx