hi gabrielle

i too was diagnosed with a low grade nhl also known as chronic lymphocytic luekeamia/small lymphocytic lymphoma and after four months needed chemotherapy which was a combination of drugs known as fcr which stands for fludarabine,cyclophosphimide,and rituximab,which worked well although i did have a few problems but did not lose any hair although they do warn you that it can happen but does not seem to happen to many people but as they say everyone is different,and what happens for one may not happen to the next,and they also say that this combination of drugs is usually well tolerated,but again you can never tell,as it was with me the chemo tablets which were the fludarabine and cyclophosphimide that i took did knock me for six,but then when i had to go to hospital for the rituximab,which was intravenusley fed that was no problem and actually quite relaxing as it takes up to 5 hrs to get into your system and i enjoyed talking to other people who where recieving treatment for different cancers,but were always upbeat and very uplifting,so try not to worry too much and see what they have to say on monday and hopefully your fears may not be realised,so take care and if you dont mind let me know what happens.

jeff hugz to you x

Hi gabrielle,

Welcome to Cancer Chat.

I'm sorry to read that you are going through such a worrying time, but you have come to the right place for support from others who have been through similar situations.

I'm glad dad1929 has got in touch with you and I hope you enjoy being part of this community.

Best wishes

Renata

Cancer Chat Moderator

To dad1929 , thank you so much for your reply. I am glad that I joined this site as I am sure it will help, especially when I'm feeling really down. I will certainly post you on the outcome of Monday. You don't mention how you are yourself at the moment - feeling well I hope.

Hugs from me too x

Thank you so much Renata. I am sure I will get a lot of help and comfort from this site. You are doing a great job.

Gabrielle x

hi gabrielle

i am not doing too bad,and i am watch and wait again with regular visits to hospital for blood checks and general well being,the thing which bothers me most of all is the fatigue,which is a real pain as it affects my working life and i can`t see it improving much in the coming months,but i have been very fortunate that my employers have been very understanding with the way things are and have been,as i normally do shift work and i have not been able to do shifts since july 2010 which is a long time,but i live in hope that things will improve soon,so fingers crossed,anyway i`m sure you will find this site a great help as there are so many nice people who are allways willing to help and it picks you up when you need it,so for now take care and i will be thinking of you for today.

   jeff hugz n xx

Hi Jeff

Monday was not as bad as I feared. The consultant says he does not believe the night sweats are to do with the lymphoma. He could find no lumps and sent me for a chest x-ray which was clear. An ultrasound is being arranged and I am to go back in a month to see him. So I guess I am also "watch and wait " again. Sorry to hear you are so tired - I don't have that problem at the mo but I suppose we all have different symptoms. If only they could come up with a cure for this darned thing as it hangs over you like a black cloud. Hoping your fatigue improves soon. Keep in touch and let me know how you are getting on.

gabrielle x

hi gabrielle

well that`s good news for you and it`s funny that you mention cures as they are making inroads towards treatment and are hopeful of good results in the future,and you can find the information on a site called patient power  and when you get to the site look under health topics and it guides you to where you will find the latest updates on cll,so it`s worth a look,but you are right it can hang over you but you must try to get on with things the best you can,so as for me i am back at hospital on the 23rd jan and depending on how my blood results are and how i am feeling in general will determine how my working life will pan out in the coming months,but i will just have to wait and see,so for now take care and anytime you want to talk just pop on here and i will be glad to listen.

  jeff hugz x

Hi Gabrielle, Ive just been reading all your emails.....Im so glad Monday went well for you....thats the thing with ts dam disease....the word is so scary..and we tend to jump ahead of ourselves..which is very natural i guess.  I was diagnosed with Hodgkins Lyphoma in 2003....i had tumour around my heart lungs and oesophugus! i was given 6 weeks to live!!....i was put into intensive care for 2 weeks..and given emergency chemo.....to their amazement the tumour started to shrink.....i had 8 months chemo and a months radiation......this was all in South Africa ....where we are from....i then moved here with my family..as there is no such thing as the NHS.....so we lost everything!! i was working full time..which i had to give up..as i just could not stand in that heat all day!!....Chemo was tough....but i kept a diary...and got involved in many projects...painting...drawing..writing!! i found keeping busy was the key!! i had shoulder length hair....which i shaved a number 2...and that helped...as i did not want to have bald patches...it went very very thin...but no bald spots....Everyone is differrent...and the meds change all the time...as they discover new ones....which is wonderful....the anti nausea ones are allot better now i believe....but you will get there...we are all here for you....you are never alone.....take care and keep us updated!! ive been clear now since 2009!! xxxxx Regards Cheryl

Hi Jeff

I looked at the patient power website thay you mentioned and it is very helpful. Thank you. The fact that you take such a positive outlook is great and I think is helping me to be the same. What is the point of worrying after all....it can't help anything (easier said than done sometimes of course). Many thanks again for the encouraging chats. I will be thinking of you on the 23rd and really hope all goes well. How lovely it would be if you could go back to your old working life.....take care..

gabrielle xx

Hi Cheryl

How sweet of you to contact me. You have been through sooo much it makes my problems seem very small. I agree that keeping busy, writing etc - which I also do - does help and takes your mind off the "dreaded" word of what is going on inside one's body. I gave up work early to look after my husband who sadly passed away last July. Although I have a very caring family the loneliness sometimes gives one too much time to dwell on things. I would love to work again but can't see that happening in the short term. I think you have been so brave and would like to take you (and Jeff) as an example of how I can be too. So glad you have been well for so long. I haven't got a date for my ultrasound yet but fingers crossed all will be ok.

Many thanks again and stay well!!

gabrielle xx