Hi Red,

I am relatively new to all this to. I was diagnosed with T-cell Large Granular Lyphocytic Leukemia about a year ago. The meds I am on now have kept me transfusion free since April. I also experience alot of fatigue and low stamina. I do push myself to hard and I am still trying to learn that resting is ok. You will find these people are great to talk to,I could'nt find the right site where I fit in(my disease is also rare) and here I feel like I'm in the right place. Amen to the Bone Marrow Biopsy being the worst!! I've had about 4,and swear my next one will be with more than a local!! Hang in there and take care of yourself.

Joe, so glad you are feeling better,but take it slow you certainly don't need a relapse! I am still on hold with Aranesp(yeh!). Keep me posted on how you are doing.

Teddy

Hi all,

       And welcome to all the new people. It is good to see all are doing well.Joe that flue seems to be persistant.I hope you shake it soon .I have been fighting off flu like symtoms for a couple weeks myself.It started with strep throat.My GP is impossible to deal with and I think I am going to try a new one.My throat got unbearable overnight so I called her at 9:30 am and they told me she wouldn't get back to me until 5:30 pm because she had to go thru all her patients in the office first. I was getting worse fast so I called again at noon they said she would call in a prescription but I had to wait until 5:30. My throat got so painful my wife talked me into taking some percoset.(Tylenol had no effect)I had to melt them in warm water to get them down.By the time she got back to me at 6:00 pm I was extremely ill.She was mad that I called more than once.She gave me antibiotics but I don't think it was a proper one. It took a couple days to start working and by the time I was done taking them I was not feeling totally better.I saw her on the last day of taking them and she said I was probably not as sick as I thought I was . My wife is a nurse and aside from my cancer she said she has never seen me as bad as I was then.Now I am still having symptoms and my sore throat is trying to make a come back five days later.It seems that since I've had HCL I get sick all the time. I don't feel I have the energy I should either.Before HCL I never got sick.I don't even remember getting a runny nose for years.When I was dx'ed with HCL I also was dx'ed with lyme disease.I was never retested for the Lyme Disease to see if it went away.I started thinking today that maybe it is still present.Oh well enough about me.

  As far as lymphocytes go it took a long time for mine to get back to normal levels.The Onc said eight months to a year.Joan I hope your numbers have improved greatly since last checked.my onc also told me that cladribine can work for upto a year after introduced in the body.He waited much longer than he said he would before giving me my second BMB.Probably so he new my numbers would be much better.

  Sorry I haven't kept up with every one. I just haven't been myself lately.

        Good Health To All As We Enter The Holiday Season

                                                                                        Mark

Hi All,

Sorry it has been a few weeks since I have been on the board.  I've had a bit of a bumpy road the last few weeks.  On Oct 23 I saw the onc and he said my spleen was a bit enlarged.   So you can imagine what a tail spin that followed.   He ordered an ultra sound and they saw two spots -one on spleen; one on my liver.  The spleen ended up being nothing but they saw two funny looking things on my liver.  As a result of the enlarged spleen and liver, another BMB was performed and I had an MRI done yesterday on my abdomen.  In addition my billies were up a bit so that was freaking me out too.   The bad news is that the BMB shows a few more hairies then the one performed in June but my blood counts are fantastic...reds, whites, HCT, etc.   So we wait another 2 months and I will have another BMB to see if the hairies are becoming progressively more belligerent to the treatment.  

The good news is that the liver spots were simply blood vessels, my spleen is actually reduced 3 CM but now they see something on my kidney.  Jeeezzzz... I said to myself - what next.  Anyway - lesson learned - those MRI's reveal a lot of stuff that you probably don't want to know about.   I am seeing a urologist on Dec 21 just to be sure the kidney issue is nothing.  My Onc says no need to worry - the kidney is functioning and no other signs or symptoms.

He is also not really concerned about the BMB results although I am.  My hairies may be a little more aggressive and they may be more resistant to the chemo.   I imagine I would go through another round of cladribine unless they want to try some of the newer treatments in clinical trials.   They are having good success with protein based treatments.   I am not looking that far ahead and am thankful for every day I have.  

.  Mark I hope you are feeling better.  You need a new internist given the HCL.  You would think she would acknowledge you are at higher risk and respond immediately.   Joe hope you are well too.  I arrive in Vancouver on 10 Jan and stay through friday of that week.   Let us plan to meet.  I think I am staying at the Westin.

On a brigher note, the holidays are upon us.  I have a blueberry pie in the oven and am getting ready for turkey day.  I am running a 5k on Thursday morning - then I can eat more!!!

My best to you and your families.  I am thankful for all of you and having you here to listen.   This disease, cancer, is crazy but I am grateful to have found all of you to share thoughts, fears and expectations.  

My best to all for a wonderful holiday.  joe I know your thanksgiving has passed.   But I have a couple of Canadian friends from Vancouver joining us on Thursday.  I will think of you.

My best,

Joan

Hi Joe,

I sent you across a message with contact details.  We will speak soon.

J

Hello everyone,

  I hope everyone had a great Thanksgiving. We did it twice. Once on Thursday at my brothers and on Saturday at my home.It was so nice because my three sons(wives and grand daughter) spent three plus days at our home.It is always fun when we all get together.Next is Christmas.I was so sick last year I couldn't put lights up outside .This year my grand daughter(Maylee) is old enough to start appreciating all the festivities. I have a twenty foot tall blue spruce in front of the house.I plan to put lights on that and around the house that flash to music.It should be fun.We may go to Boston for New Years Eve.

  I am feeling much better right now and hope that continues through the new year.I hope you are feeling better as well Joe.How are you planning to spend Christmas?It is exciting to hear The Olympics are in your neck of the woods. It is a shame you can't get tickets.Maybe something will happen that you can get hold of some before it is over.

Joan, I am sorry to hear you are not having the best success with your treatments.I hope your next BMB comes out better.I am sure you are not looking forward to another one of those so lets hope it is the last one you need.Still you sound as if you are doing well and still running. That is wonderful.I just can't seem to get myself going.I keep trying though.Keep us posted on your progress. I wonder what is going on with Jan,Cindy,Jared and Laurel.

      Wishing Everyone Good Health And Happiness Through The Rest Of The Holidays And Forever

                                                                                                                                                                         Mark

Jared,

         It is good to hear you are doing well. I wish you continued good health and A Happy New Year to everyone.

                                                     Mark