T-PLL Support Net

A question from a patient

2011-09-12T16:31:00.000-07:00

I received the following question below; if anyone can provide an answer it will be apreciated and I will be sure Tom gets it.

Mark,
Since last I wrote my wife's T-PLL diagnosis was confirmed at MD Anderson and we are going to start Campath therapy here in Albuquerque in the next couple of weeks.

I have a question which is:

My wife has recently been diagnosed with T-PLL and is about to start alemtuzumab (Campath) treatment.

She has been taking coriolus versicolor (turkey tail mushroom) which has been shown to be beneficial in some cancer treatments, including some Leukemia studies (http://www.mskcc.org/mskcc/html/69194.cfm ), and has no reported adverse interactions with alemtuzumab (http://www.onco-informatics.com). We are trying to understand if its use should be discontinued. Does anyone know if it has been used simultaneously in a course of treatment with alemtuzumab and what the outcomes were?

Thanks,
Tom

Being Cancer

2011-04-21T12:03:00.000-07:00

I'm pleased to announce that I have added a "badge" on the sidebar for Dennis Pyritz's blog, Being Cancer, which recently passed 100,000 visitors.

I am pleased to learn that Dennis is returning to work part time as an RN in the transplant unit at the University hospital! Dennis, a t-PLL patient who endured Campath by infusion for his first treatment, had a successful second treatment, followed by a mini-transplant where the stem cells were donated by his brother.

1 year post transplant; wahoo!

2010-09-09T13:33:00.001-07:00

Happy "Birthday!!"

2010-08-27T07:23:00.000-07:00

Today marks one year since Max had his bone marrow transplant. We celebrate his Birthday and THANK GOD for this day. The one year milestone is a huge accomplishment and I am so proud of my dear husband. It has been a long journey since that day in December 2007 when I heard him say the word 'leukemia' and a few months after that when I heard the doctor say 'T-PLL.' That day in December our lives changed forever and will never be the same. We have met some amazing people along the way, many from this blog. I thank Mark for putting this in place so we can connect, share and maybe in some way help others who have T-PLL.

The year was scary at first starting with 39 long days in the hospital. At home it was filled with lots of medical needs, doctor visits and uncertainty. There were frequent visits to the BMT clinic and very limited exposure to house guests - which resulted in an extremely boring social life. Gradually we emerged back into the 'real world' and reconnected with friends and family whom we dearly missed. SKYPE saved us by allowing us to SEE friends and family from long distance. I highly recommend it!

Max was very blessed to have little to no GVHD (only a slight skin rash) and therefore never had a need for steroids. He went off immune suppressants in November and continued to improve from that point forward. The number of oral medications was gradually reduced as well. Last week he began a series of vaccinations (baby shots!) including diphtheria, whopping cough, tetanus, pneumonia, hepatitis & polio. Our visits to the clinic are on a monthly basis now and soon we will be turned back over to our oncologist at the hospital. He will return to the BMT clinic on an annual basis from that point forward.

If you have a bone marrow transplant in your future, my advice to you is to be strong, stay positive, connect with your support system and pray to God. I am happy to share more details with you if you want to contact me.

New clinican trial for T-PLL

2010-08-05T14:08:00.000-07:00

I just received the following email. Let us hope this trial also produces significant advances in treating T-PLL!

Good afternoon,

I am contacting you since we recently opened a new trial for T-cell PLL at Stanford. I was made aware of your website from a patient who thought sharing that we have this trial open might be helpful. It is for patients with relapsed or refractory disease and treatment will be with velcade. All of the details are on clinicaltrials.gov

Best,
Holbrook Kohrt, MD

Here is the web page for recruiting:

Study of VELCADE for Relapsed or Refractory T-cell Prolymphocytic Leukemia

Welcome to Bill, Aplogies to Claire

2010-06-02T13:31:00.000-07:00

Bill has been recently diagnosed with T-PLL, and has created a blog to chronicle his progress through treatment. keep an eye on it, and prayers for Bill!

Http://tpllbillsjourney.blogspot.com

Claire left a comment in April and I missed it because I had turned on "comment moderation" due to obscene Chinese spam being posted on this blog. What I didn't know was that I wasn't receiving notification of the comments, as I had in the past!

So Claire, please write! click to email on the right margin (my email is mgross [at] integrity [dot] com) - Please put T-PLL in the subject line.

I hope to hear from you! again, apologies for missing your comment.

All the best to you both,
Mark

Aprea starts Phase I study with APR-246

2010-02-22T11:58:00.000-08:00

A patient who did not respond to treatment has entered the following clinical trial, I thought it might be of interest and have posted the link.

Aprea starts Phase I study with APR-246

The MPA approval, on April 8, 2009, for Aprea to start the Phase I study meant that the company could go ahead and start the study with their first CD (APR-246, also denoted PRIMA-1MET in the literature). Patients started to be included in June 2009.

This study, APR-246-01, is a first-in-man, multi-center, open label, non-comparative, phase I, dose escalating study of APR-246 infusions in patients with refractory hematologic malignancies or prostate carcinoma.

During the treatment phase, the patient will receive APR-246 treatment on four consecutive days as a 2-hour daily intravenous infusion. The treatment phase will be followed by a 17 days follow-up phase to reveal any late adverse effects. The patient’s total duration in the study will be 21 days.

5 Month Anniversary of Mini Bone Marrow Transplant

2010-01-28T17:14:00.000-08:00

So the transplant is behind us and it was indeed a journey to be sure. My husband was in the hospital for a total of 39 days. Admission was one week before the transplant which was done using bone marrow not peripheral blood - more common as we came to find out. The chemo given pre-transplant consisted of fludarabine and melphalan.

The time spent in the hospital was one of the most intense and hardest things we had ever endured, but it went amazingly well, all things considered. I met so many incredible people - nurses, aides, doctors, other BMT patients and all their family members. On the same floor were other leukemia patients some of whom did not leave the hospital and I felt the pain and agony of their wives and children as they prepared to take them home to say good bye.

As far as complications and side effects, of course the usual happened. His counts were very slow to come back up and at times this was very discouraging. We were told this was due to the usage of marrow and also his age (65.) But with the help of growth factors and a few bags of blood and platelets, they did finally get up to a point where he could come home. That was one happy day, but at the same time, the day I joined a profession I had no interest in - Nursing! Administering IV magnesium, flushing of 3 central lines, changing a dressing under 'sterile' conditions, taking vitals and just watching him like a hawk was a challenge like no other I had ever experienced.

Some way, some how, God gave me and my husband the strength to endure the days to come as we counted down to the first milestone - Day 100! He was taken off immuno-suppressant drugs earlier than usual because once again his counts were slow to come back up.

Fast forward to today - 5 months later and 5 bone marrow biopsies and mixed chimerism tests later - all news is good! Last tests showed no abnormal blast cells (no evidence of CD52 on the Flow Cytometry) and donor cells on the increase in the immune system. GVHD has been limited to a few episodes which included a slight skin rash, minor eye irritation (did not last long), a period where his liver function tests went off the charts and his Eosinophil count was above normal. We are now praying that was what they want to see - a little but yet enough to cause the GVL effect. He had his central line removed this week and that was another day to celebrate!

For anyone contemplating this procedure upon recommendation from your medical team, I would suggest you get second opinions, make sure you have a solid support team ready to be there for you during and after you come home, and most of all have a positive attitude and solid faith to get you through the roller coaster ride.

We know we are far from done with the recovery, but feel we are on the road to what is called our 'new normal' and can resume our so called former lives when the springtime rolls around!

Feel free to contact me if you want more details as I am more than willing to share my insights with you.

Looking for Mark Vancura?

2010-01-28T08:59:00.000-08:00

Mark Vancura was recently diagnosed with T-PLL and is, as I write, in ICU as a result of this disease. head over to his blog, CURING VANCURA which Leslie and he started, and show your support! Mark promised the doc that T-PLL was going to get an a**-kicking, and he's the one to do it. Even if things seem dire now, this shall pass, but there is a long road ahead.

In the numbers - for Leslie

2010-01-25T12:15:00.000-08:00

I'm posting these charts as examples of the response to Campath treatment.

In this first chart, you can see that Gwen's WBC was about 160,000 when she started. It continued to rise to about 200,000 before she reached full dosage, and then began a continuous decline to the normal range. It took less than 3 weeks to reach the normal range, and treatment was discontinued after only 4 weeks.

(In this first chart, the light blue (cyan) line is Campath dosage and infusion points. Click image for larger picture)

When Gwen relapsed in July of 2003, she waited until her WBC counts were about the same as when treatment started the first time. The response this time was immediate, and her counts went down even under the initial reduced dosage. They sort of plateaued for a week or so, then plunged to 0. We thought we had it beat again, but within days it had rocketed back up to 200,000, and Campath was discontinued and fludarabine was started. Now the counts really rocketed up, reaching almost 500,000 - that is, 50% of the blood being white cells. You can see how it drops off, goes up, and drops, and goes up - this reflects leukopharasis, not the fludarabine. Leukopheresis is filtering the blood to remove white cells, much like dialysis.

(In this second Campath is in blue, Fludarabine is the magenta "x" and the brown dots are "CHOP." Click image for larger picture)

It took one treatment of "CHOP" to take Gwen's WBC to normal and she walked out only days after I'd been told to make funeral arrangements. CHOP, however, is a "salvage therapy," only effective for a short time and resulting in destruction of the spleen.

Leukopheresis machine:

We had expected that a second treatment in the case of a relapse would be as effective as the first. It had been learned that the leukemia cells sometimes change from a CD52 to something else, and that makes Campath ineffective. Now, I can't tell you what that means, only that if you are reading this today in regard to a patient with T-PLL, you have options for transplant that were not available to us, and for this I am very happy for you.

Mark

Next chapter - bone marrow transplant

2009-08-02T08:51:00.000-07:00

We have moved from a sustained remission of 6 months to an upcoming mini allogenic bone marrow transplant from an unrelated donor. The donor is a 20 year old international male. We will not be told any more information and can't contact him directly for a minimum of 2 years. We were blessed as this was a 10 out of 10 HLA type match! All of our 3 expert physicians advised us this is the route to take which can be potentially curative. According to them this is our window of opportunity, the door has been opened and we have to walk through it. Waiting would be taking a gamble that the disease would re-emerge and may not be able to be put back into remission with a second round of Campath.

Having read about all the potential side effects, and seeing how well my husband looks right now, it is hard to think about what the coming weeks and even first year will bring. We have faith in God that this is our cross to bear right now and we will emerge in a better place with respect to the T-PLL in the future.

Lots of pre-admission testing, house preparations and the like are making my head spin about now. We have 3 weeks to go before admission and chemo/radiation begin. We are told to expect an average hospital stay of about 3 and a half weeks (if all goes well, longer if not) and a return to a 'new normal' in a year. Day 100 is a key milestone along the way.

I would enjoy hearing from anyone else out there who has been through the min-transplant as I know I will be going through some hell in the weeks to come watching the love of my life going through all this.

Contact information

2009-07-16T12:46:00.001-07:00

We receive all comments posted to this blog by email, and we will answer promptly - if there is an address to send it to. Unfortunately, we can't contact you if you do not provide contact information in your comment (which understandingly, you may not wish to). Please feel free to leave an anonymous comment and send a private email directly. The link at the right (contact us by email) did not work properly, and I apologize for that. It works now. otherwise, my email is mgross [at] integrity [dot] com - I hope to hear from you!

T-PLL and Being One of The 10 or So

2009-06-08T09:03:00.000-07:00

Michael in Michigan writes:

Mark has graciously acceded to my posting on his blog. Thank you very much.

This is a rare decease indeed as I am sure you are aware if you have come to this site in search of information or looking to obtain the experiences of ones who have gone before. Anxiety can really get you when you are first diagnosed with T-PLL. But my experienced tells me that the best is to buck up and not to let it get you down. Mental attitude is key. Just do not let the diagnosis get you down.

Actually going through the CamPath regime has been very easy for me. The only reaction were the chills occurring the first two days of shots and they went away with the taking of an Aleve pill or two. After that there were not symptoms. Even the bone marrow biopsy to determine whether the lymphocytes had been destroyed by the CamPath injections was a piece of cake.

The regime consists of being given a subcutaneous shot three times a week until it is determined that the bad T cells have been destroyed. From there it is on to a maintenance regime.

I would be pleased to communicate with you should you desire. Just let Mark or Shirley know and they will put us in touch.

My T-PLL Poster-Child nominee

2009-03-16T09:48:00.001-07:00

I'd like to introduce Dennis Pyritz's new blog:

Being Cancer, Networking People Transformed by Cancer

which moves on from his wonderful personal journal at Caringbridge

So, move over Captain Kirk, because Dennis had really gone "where no man has gone before."

Dennis has gone through Campath treatment, relapse, re-treatment, and a mini-transplant, and is still with us to help us by sharing his life, his story. My hat is off to you, dear friend.

Experience with T-PLL

2009-02-13T14:20:00.000-08:00

Thank you Mark for inviting me to join this blog.

I am a member of the elite club of individuals who have been touched by T-Cell PLL. My husband was diagnosed in December of 2007. "Watch and wait" until symptoms surfaced indicating it was time to treat. Just completed 18 weeks of Campath given sub-q three times per week. So far results are very good. I have spoken to others who were given Campath IV many years ago and also read a lot of the literature, so we were plesantly surprised that there have been NO symptoms to speak of to date. Next round will be what is being called 'Maintenance' which will consist of 24 more injections over the next year. The procedure will be to gradually taper the dosage off over the time period with hopes for a sustained remission at the end.

Would love to hear from others who have this disease as we are few and far between. In fact, our Oncologist told us "You would be hard pressed to find 10 cases of T-PLL in the US right now." Better odds wining the lottery..

ONTAK

2005-08-15T09:22:00.000-07:00

Reported use of ONTAK to hold T-PLL at bay after failed Campath treatment.

ONTAK

Biologic Response Modifier Agent: Denileukin Diftitox. Denileukin diftitox is a fusion protein (a combination of diphtheria toxin and interleukin-2) which selectively delivers the cell-killing activity of the diphtheria toxin to targeted cells. The lymphoma cells need to be a specific type -- they must express the high affinity IL-2 receptor on the surface of the cancer cell which then permits the IL-2 part of the fusion protein to attach/bind to the cell, halt protein synthesis and lead to cell death because of the diptheria toxin.

Welcome

2005-06-24T10:37:00.000-07:00

I have created this web blog in the hope that it will provide a means whereby the information learned, the struggles encountered, the successes, and the failures of patients and caregivers of individuals diagnosed with T-PLL can be posted. Since this disease is so rapid and there are so few who get to join this exclusive club, at any given time there are not many who are knowlegable and able to discuss this disease with a new patient. I hope this blog can help those who are entering on this journey. May God bless you.

Without prejudice to the truly remarkable physicians who are out there, I think it is probably correct to observe that most oncologists have never seen a case of T-PLL, and they do not have the time or motivation to spend researching it that you do. Therefore, you have a vested interest in learning as much as possible. I hope this blog can facilitate that. If you have links you'd like to see here, please email them to me. If you would like to write a journal and see a link to it here, I can help with that as well.