I need help from someone who has been campath. I started with a test dossage of 3mg last Thursday, the injection was given in the abdomen by day 2 I could not stand up straight. Spent most of the weekend with an ice pack on my abdomen. 4 days after that,Monday they gave me a 10mg shot this time in my uppper buttock by Tuesday night I was getting pain in the left hip region and now after 4 days they hip is very tender and paainful and swollen. I started the protocal from Dr. M aat the Cleveland Clinic. He doesn't know why this is happending. So anyone out there have you used Campath and did you have problems if so what were they and what did you do? Thanks

Gosh I am so sorry I didn't see your post sooner. The Campath injections are painful. As I told my doctor, it felt like someone had shot me in the leg. ( I got mine in upper left thigh) He explained that this was where the medicine was starting to wage war against the corrupt LGLs and it was localized. Sort of like when you get a flu shot. My leg was tender for awhile. This was just to get my immune system familiar with the medication. After we started I.V. delivery there was no more pain and my health returned quickly. I hope you are doing well!

Thanks for the reply Ducky. After I had so much pain with the first 2 injections, abdomine and left thigh Dr. M at the Cleveland Clinic decided to stop that treatment. However he did say that prehaps we would return to the campath but do it IV delivery. So we went back on heavy predisone, 30mg and up the MTX 80mg once a week. The 30 mg was for 14 days, then 20mg for 10 days then 10 mg for 1 week. Counts lokked better while on the 30 mg but returned back to what the were when I first started. What they want to do next is probably the IV campath. My concerns especially going through the winter months is doing anything that would surparss my immune system. I do take alot of vitains and supplements to support my immune system. It seems my biggest problem is my hemoglobin. I have to be transfused about every 4 weeks when it drops to 7.2 and with 2 units it kicks it up to only 8.6. So it is the chronic fatique that gets me. I try to stay as active as I can , I am a chiropractor and my job is very active. but am tired by the afternoon. So my question did you have any side effects from the IV campath? How often did yo get the injections? How long did it take before you saw any changes? This is starting my 5 year and am now 55 years old. I have gone through Dr. loughren treatment plan and had no changes it was him that refer me to Dr. M at the Cleveland Clinic so now we are just trying treatments "outside the box". Any help would be appreciated..........Thanks

Hello jayhuey. Since joining this excellent forum two days ago, I have read your posts with great interests. I'm on my 3rd round of chemo since T-Cell LGL diagnosis as of May '12: Cyclosporine 400mg daily for 4 months, MTX 20mg weekly for a month and now on Cytoxan 100mg daily for the last 3 weeks. ANC is 0 currently. My Tx plan has been a product of 3 way consultation of my local oncologist, a cancer care oncologist and Dr. Loughran at Penn State Hershey. I think I know who you are talking about when you mention Dr. M at the Cleveland Clinic. Dr. Maciejewski? He and Dr. L have collaborated on some LGL papers and are deeply involved in the research and treatment options for the disease. I have noticed active trials on Campath for T-Cell LGL patients currently at NIH in Bethesda, MD as well as at MD Anderson at UT in Houston. Interested in knowing more about campath for its success rate in LGL patients not responding to other first and second line of treatments. Curious if purine analog option (Fludarabine) was ever mentioned and offered to you. @Ducky and jayhuey. I'm an admin of a LGL patient support group on facebook. Please consider joining us. Copy paste the URL into your browser. http://goo.gl/Ekzl8

Okay, I too had to get transfused - but every two weeks - I seemed to stay in the 6's. I went through 44 units of blood over the course of a year.I went through the Methotrexate and the Cyclosporin and Pentostatin with no improvement so we moved on to the Campath. I am sorry I can't remember exactly how many shots I received, but I went three times a week. After the second week it didn't hurt nearly as much. My body was getting used to it. I think I went a total of three weeks on the injections before graduating to the I.V. The whole treatment I believe lasted 3 mos. ( I was in bad shape so my memory is poor on the subject. I so regret not writing down the course of events now.) Because of the flu outbreak this year I would recommend wearing a mask anytime you leave your home. Go ahead and do your treatments. You will get better if it works for you and you don't want to delay that. After six weeks of treatment I had put away my cane and was up and breathing normally. I was able to take my son to Universal Studios and didn't get exhausted! So far I have experience no side effects and have been in remission for 21 mos. My hemoglobin has remained in the 13s and I feel awesome! Good luck to you!