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need help

jayhuey Message
14 Jun 2012, 11:05 PM

I need some help from my T-LGL family. I'm 54 year old male was diagnosis with T-LGL 4 years ago I have had excallant health up that that point and was found after a routine CBC when I turned 50. My major problem has been a low granocyctes count 500-700 and a low hemoglobin 7.4 - 7.8 with the only symtom being that of fatigueness. I have been up to see Dr. Loughren and been to the Mayo Clinic. I have been on methratrate, cyotoxin, and cyclosporin none rendering any help. Now they want to put me on campath. I am very concern in that it is very toxic and with an immune system only working about 50% it could cause me some major problems. Thus is their anyone out there that has been on this and did it help? What doctors have used this? Has anyone tried any other conventional or unconvential treatment that helped? Any information would be much appreciated!! email:
ddixon Message
24 Jun 2012, 07:35 PM

I'm sorry that no-one's responded to your question yet. I have read on here somewhere about Campath, I assume you've read the "treatments" topic? my husband's body reacts strangely to Claritin-D (24 hr) and it seems to help when he is taking it and get worse when he hasn't taken it in a while. no reasonable explanation for this and we know it may just be in his head. if your biggest problem is fatigue (I do NOT mean to belittle it, it makes everything difficult!) maybe some nutritional supplements like increasing your dietary intake of iron or taking a B complex could help?
jayhuey Message
25 Jun 2012, 03:26 AM

thanks for your reply - yes I was alittle disappointed that I didn't get any responses so thanks again. What is Claritin -D ? Isn't that some sort of allergy medication. Been taking all sorts of Dietary supplements including iron and B-complex. Had to get 2 units of blood Friday and really I can't say it may me feel much better. I do have an appointment at the Cleveland Clinic in about 4 weeks with a Dr. Mackervick or something like that he has been doing some work with Campath I got his name from Dr. Loughren.
chitown35 Message
7 Jul 2012, 10:03 PM

Jayhuey, I am in the same spot as you I will be turning 38 at the end of the month. My doctor in Chicago Jane Winter was referred to me by Dr Laughran and as of late she has also been in touch with the Dr at Cleveland clinic. I was just in the hospital last week for pnumonia and cdiff. They took a bone marrow biospy and I have a follow up next week. It sounds like we may be on the same course of treatment coming up. I won't know for sure until next Thursday.
jayhuey Message
8 Jul 2012, 04:02 PM

thanks for the reply - let me know what you find out Thursday my appointment in Cleveland is 07/25/12. thanks Jay Huey
Ducky Message
9 Jul 2012, 01:45 PM

Hey there, I am 16 mos remission with the help of Campath. (Sorry was on vacation and didn't respond sooner) My hgb got down in the 6s and I had 50 transfusions to keep me going until we got the Campath approved. ( Did the Methotrexate and Penstatin with no improvement) Six weeks after treatment with Campath I was walking at Universal Studios, a bit weak mind you, but I was walking without a cane in months. No adverse effects from the Campath, other than initial pain with the shots. (They put the shots in your leg before moving on to I.V. ) My hgb was 13.4 last week - an all time high! I swim, bike, walk, am perfectly normal for now. I do recommend it! And will be happy to answer any questions I can.
jayhuey Message
10 Jul 2012, 05:51 PM

Thanks so much for getting back to me. This is the best news I have heard in the last 3 years. To Have a hgb in double digits again would be fantastic. Been around 7.3 - 7.6 for the last few years with a slight boast in the 8's when transfused. I am tired of being tired if you know what I mean. Who was your doctor? What loops did you have to go through as far as insurance goes for approval? Is this soemthing you have to stay on? How long were you on this before you saw a change? And you had really no side effects from the campath?
Ducky Message
10 Jul 2012, 07:06 PM

I live in Pensacola and my doctor is Sunnenberg with Sacred Heart. I am on Medicare because of being considered disabled and the hoops were Methotrexate, Pentostatin with no improvement I qualified for the Campath because my defective protein is the CD-56 which campath targets. I saw major improvement in 3 weeks with no more transfusions and was normalized (walking without a cane) in 6 weeks and in remission by three months. I have remained so now for 15 mos. However, where my hgb is strong, my lymphocytes are starting to creep up. I feel fantastic, awesome! I realize though that I may have to do treatment again when the hgb drops and the LGLs proliferate again. I don't know when that will be, but I fear it may be sooner than the five years I was hoping for. No side effects except for initial pain with the shot in my leg. I recommend your left leg if you drive. All the best to you!
jayhuey Message
10 Jul 2012, 09:45 PM

Again thanks so much for the information and for getting back to me so quick!!! I'll probably be getting back to you with more questions after my visit to Cleveland Clinic. Any other information or questions that I should be asking the doctor in Cleveland let me know. Thanks Jay Huey
Ducky Message
27 Jul 2012, 01:15 PM

So Jay? What was the verdict? How did the doctor's appt go? I have been wondering...
chitown35 Message
6 Aug 2012, 04:54 PM

Jay, How did it go? They have decided for me to start cytoxan this thursday every other week for 6 weeks. My Dr consulted with laughran, Brodsky and Mashevsky and they were split, 50 % thought stem cell transplant and the rest chemo. I had been transufsion dependent for platelets for the last couple weeks hovering around 12-14. Today my count was up to 26 without rhyme or reason.My Dr feels that cytoxan would be the best bet now and if I did stem cell it would have to be through cord blood since I hadn't gotten a match yet.
sholbink Message
15 Aug 2012, 10:26 PM

Looking for a better health care provider in Seattle: My husband was diagnosed with LGL in January 2012. We switched doctors and started seeing Dr. Becker at Seattle Cancer Care Alliance. She said she wasn't sure what was going on with Ed. Has the LGL monocolonal cells, not too many, has REALLY low WBC and Low ANC. Whenever he gets a fever, we try to use the system and go in to see the ARNP, get some blood drawn, etc. But...we leave a message for the nurse at 7 in the morning, she may not get back to us until the end of the day, and we are faced with the Emergency Department. Does anyone know of a system in Seattle that is better? maybe a doctor that gets right back to you? or a doctor with a responsive nursing staff? Or is this normal? Should we be using Ed's general physician? Anyone out there use a Naturapath? New to all this and really confused how to use the medical system.....Ed has never really been sick!! He's 52...healthy otherwise. thanks for any info!----Sue
susi235 Message
17 Aug 2012, 08:03 PM

I've found that a teaching hospital/cancer center is more responsive than a private clinic. It never hurts to have ambitious young interns, and I think the staff doctors like to teach the interns about unusual cases. But if it is an urgent fever after noon, I go to urgent care and then the doctor calls the doctor and gets a timely response.
hgouw Message
19 Aug 2012, 06:33 AM

To sholbink, I was diagnosed in May 2011 after a routine blood test indicated low haemoglobin, low neuthophils and high lymphocytes. I had no symptoms at all. Initially the blood specialist told me to take methotrexate weekly. After 9 weeks taking methotrexate, I decided to be treated by a naturopath. He began by giving me some detox. Afterwards (from November 2011 to February 2012), he gave me herbal and vitamins for my bone marrow. My haemoglobin slowly improves (from around 100 and now stabilises around 118-120). The neutrophils still fluctuates around 110 or more but lymphocytes is still high. My specialist is happy with my current situation. I take blood test every 2 months and sees him every 3 months now. Since May last year, I have completely changed my diet and lifestyle. Always tries to eat and drink healthy. I find Dr. Mercola's website very useful and encouraging to have a healthy diet and lifestyle.
jayhuey Message
3 Sep 2012, 03:29 PM

Sorry I didn't get back to you all. Saw Dr. M at the Cleveland Clinic due to the referral of Dr. Loughran at Penn State. I had been through his protocol and wasn't getting better. Dr. M said I had an unique case of LGL. First my WBC is high and not low, I have hemolytic aneima with this, and I'm young, 54. He didn't want to start with the Campath but wanted to put be on 2 different medications at the same time, predisone, 20 mg for 14 days then tapper to 10 mg for 7 days then 10 mg for every other day for 7 days. Initally the counts lokked better but when we started the tapper the counts went back. Also during this time I was taking a different immunsuppresant tacrolimus 6mg 2x/day for the 4 weeks. Hemoglobin is back down to 7.2 had a transfusion just 6 weeks ago. So I have another appointment with Dr. M next Wednesday 09/12/12 I think he might go to the campath if we can get the insurance approved. Thinking about going to a holistic detox clinic to see if I can get some help there. Going on 4 years mentally it is starting to take its toll. Anyone that has done the campath let me know how it went? Thanks