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

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

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

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 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 gabrielle

how are you today,and it`s nice to see you feeling a bit more positive and also more support for you from africa and parfait which is always welcome so keep posting as it really does help,so for now take care and take it easy.

jeff hugz to you.

Hi Jeff

I am feeling much more positive about things and hearing all your stories helps a lot. I don't have my ultrasound appointment yet but am not allowing myself to worry about that. Hope you are a bit less fatigued. Keep posting me and let me know how you are getting on.

gabrielle xx

Hi Jeff - hope all goes well for you on Monday. I have my ultrasound on Thursday.

gabrielle xx

hi gabrielle

thanks for that and good luck to you also for thursday,as it is with me,i sort of feel a little bit under pressure as someone at work has requested that the occupational health get my back on my normal job,but then again it doesn`t make any difference because i will only do my normal job if and when i feel fit enough to do so,but you always get one that has to try to chance their arm and make themselves look clever,but again as it is i am having trouble with my stomach which is something i will discuss with my consultant amongst other things,i am also going to mention that site i told you about and how excited that they seem to bee about the future of treatment and see what they know of things so i will keep you informed about everthing as soon as i can,so for noe take care and try to keep them positive thoughts going.

jeff. hugz n xx

Hi Jeff

Just ask all the questions you want answers to. As you say, there is always one at work who tries stir things up. Occupational Health CANNOT make you resume your normal job if you are not up to it. Let me know how you get on. My consultant says the night sweats are not connected with the lymphoma but I am not convinced. Will see if the ultrasound shows up any probs with the spleen etc. Get back to me after Monday and let me know what they say and what answers you get.

Take care

gabrielle xx

hi gabrielle

how did things go for you the other day then,and how are you doing,as for my hospital visit on monday things went reasonably well as my bloods were normal for the second time in succession and everything seems to be going well on the cancer front so i dont have to go back for another 2 months,although i have been having trouble with my stomach which may be the hiatus hernia that i suffer from so the doc recommends that i have the camera down my throat for further investigations but i can honestly say that i am not a fan of that but if it has to be then so be it,anyway i hope all is well with you and i look forward to heariong from you.

  jeff hugz to you x