Post # 71  Responding to a few friends that have found us through the blog
Betsy contacted us in November of 2015 after the reading our blog.  Her significant other, Bert was diagnosed with TPLL and was starting his journey.  We met for a lovely dinner in Titusville, FL and had great conversation learning about each other and answering questions they had.  Bill and I wish them the best of luck on their journey.

Christine and Kyle Jameson contacted us on Jan, 22 2016 after they read the blog.  Kyle is on his journey towards transplant, which is scheduled for approximately April 15th.  Kyle is a strong young man who has a donor and has a strong caregiver/advocate, his wife.  That, with his great attitude will help him through this journey.  We think about Kyle and Christine everyday and follow them on Facebook.  It is heart felt to see the number of followers they have and the amount of support and prayers they receive.  Christine, Kyle and their baby boy Liam are temporarily living in Manhattan for the transplant to be performed at Sloan Kettering.  They live in New Hampshire and have been away from home for several months now.  Please keep them in your thoughts and prayers.

May of 2015 Kathi Haehnel contacted us through the blog and is on her journey, Bill spoke with Kathi back then.  Hope her journey is going well and we wish her the best.

Larry Basil is six months out post transplant and is doing well.  Larry is undergoing his six month testing at Moffitt this week, we wish him well.

The most recent post was yesterday April 1st from Marilyn who lives in Australia. We are happy that you found our blog, it is there to give hope to those that follow us.  Having a transplant is a decision that only you, your family and your doctor can make.  There are many factors that come in to play such as age and health.  With the lung issues you have had, the Pulmonary Function Testing that is required to determine if you are a candidate may be a challenge for you.  We have heard of people your age that have been candidates if they are healthy and strong.  We are happy to help you in any way we can.  If you would like to contact us, please leave a post with your e-mail or skype name.  We will not publish the post, so your information will be confidential.

Post #70 - 1825 days and counting (5 Years)

Bill celebrated his 5 anniversary post transplant on Monday November 9, 2015.  Bill is doing great and looks great.

On Sunday November 8, 2015 Bill and I attended the Moffitt Transplant Reunion in Tampa, FL.  The event was well done and we enjoyed the presentations.  As Bill would say, "of all the people that attended the event, Moffitt ask Mike to speak to represent all the caregivers".  It was an honor for me to do so.  If you are friends with Bill or I on Facebook you can see a video of the speech.  As soon as I can, I will post the video here as well.

Larry Basil, who had TPLL, found Bill through this blog.  Bill and Larry kept in touch through Larry's journey and after the reunion this past Sunday, we met Larry Basil and his wife.  Larry had his transplant on October 6, 2015 at Moffitt.  Larry has been discharged and is outpatient near Moffitt until he reaches his 100 days.  Larry looks great and is doing well considering what he just went through.  Larry, stay strong!!

Next week, we go to Moffitt for Bill's 5 year check up.  I will provide an update after the visit.

Thanks for your continued support and dedication to reading the blog.  Keep the comments coming.

Post #69 doing well

I missed posting on Bill's 4th anniversary so better late than never.  Things are going well.  The Dr. Is very happy with his progress.  Bill now goes to see Dr. Ayala at Moffitt every six months.  All of his blood work continues to be in the normal range.

Bill is a strong man and I am very proud of the fight he has put up against this disease, he has won!!

Thanks to all the folks that read the blog and provide comments.  Keep them coming. We will continue to update our readers on Bill's success.

Mike

Post # 68 - Response to Nick

Nick, Thanks for your response.  I am sorry for the delay in getting back to you.  We are familiar with  Dr. Claire Dearden's article.  The reason we stated that the IV Campath treatment is rough was based on the writting by Dennis W. Pyritz, RN, BA, BSN on his blog "Diary of an illness".  You can view his blog from the link on our blog.
We do not have any experience with IV treatment, only sub-Q

Post # 67 Response to Joy's questions

Response to a questions from Joy

Joy, thank you for reaching out to us.  I will answer your question with facts from Bill's personal experience which may differ from others.  Bill's first treatment with Campath was on Friday June 4th 2010 and was 3mg, the second treatment with Campath was on Sunday June 6th, 2010 and was 10mg, the third treatment with Campath was on Tuesday June 8th, 2010 and was 30mg.  All subsequent treatments were 30mg Monday, Wednesday and Friday of each week.  Bill received 47 treatments of Campath, the last one being on Friday October 1, 2010.  All treatments were sub Q, which is by injection under the skin.

In addition to the Campath the Dr. in Hershey PA believed that also using Cladrbine as a treatment would further fight the disease.  Cladribine was given for five days once a month, an 8mg infusion each of the five days.  Bill received three rounds of Cladribine, the last was on Friday August 6th, 2010.

The Dr. explained that the chemo needed to stop at least 30 days prior to the admission to the hospital for the transplant.  Bill's last treatment of Campath was on Friday October 1, 2010, from what we were told treatment with Campath lasts from three to four months.  Bill's WBC went from 22 to 1 during this time.   Bill was admitted to the hospital on November 3rd to start his pre transplant regimen of high dose chemo.  On November 9th Bill received his transplant.

The disease is very aggressive so the plan was to get the WBC under control through Campath and then perform the transplant since that was the only known way of achieving remission.  The various bone marrow biopsies were the only accurate way of detecting the success of the transplant.

Thanks for the question and I hope my response was helpful.

Post #66 - Update

 

 

In November of 2013 Bill hit his three years post transplant milestone.  The doctor is very happy with Bill's progress.  We were seeing the transplant doctor every three months, but after the last visit Bill was changed to every six months.  More progress.  The one count that has not come back is his CD4.  The normal range is between 0.410 – 1.590.  Below is the progression of Bill’s CD4:

02/10/11    0.056

07/13/11    0.216

10/27/11    0.132

03/07/12    0.237

02/20/13    0.247

08/28/13    0.320  - He is almost in the normal range

Since the last update Bill has caught a few colds that turned in a fever. We have learned that as soon as he gets a fever we need to get him to the doctor.  It took a while but the antibiotics eventually got rid of the fever and cold.

In my opinion Bill looks really good considering the journey he has taken.

Our good friend Mike's nephew in-law (if there is such a word) had CLL and had a transplant last year at Moffitt.  He did very well and had no complications.  The most interesting change that we noticed to the transplant process is that they discharged him on day three post transplant and treated him for 100 days as an outpatient.  It is amazing how medicine advances as time goes on.

In February we visited with Shirley, who was vacationing in Florida.  This is the first time we have met in person and it was great.  Shirley was the caregiver for her husband Max, who lost his battle to T-PLL on January 24, 2013.  This community is small and we have learned that having a network of those that can relate to T-PLL is priceless.

A shout out to Bill's father Sam who turned 90 and Mike's aunt Eleanor who turned 98 in February.

On January 27^th we rescued another dog.  Her name is Missy and she is a Chihuahua mix.  She white, weighs 5.5 lbs and is a great dog.  She is adorable and gets along with Sookie.

As we have said in the last few posts, we will continue to make updates so you will know how Bill is doing post transplant.  If you have questions please post a comment and we will get back to you.  All comments are screened prior to approving for public view.  If you don't want your post public we can deny public viewing, just provide a way for us to contact you.

Thank you for continuing to follow Bill’s journey



Happy Birthday Bill

Post # 66 - Happy Birthday Bill

Today marks Bill's 60th Birthday, exactly two and a half years after his transplant.  Before I get emotional, I would like to catch everyone up on what has transpired since the last post.

Sept 2012 - Bill did not have any relapses with the pneumonia.   He progressively improved and as of the last chest x-ray his lungs look clear.

Nov 2012 - Bill had his two year check up and bone marrow biopsy.  The CD33 is 99.6% donor (down from 100% last year), the CD3 and the bone marrow are both 100% donor.  Dr. Ayala said that Bill is in remission!!!  Here is what the nurse wrote me in an e-mail 

"I have attached all the reports.  He is in remission!  The reports are exactly as expected, with a full chimerism of 100% in the marrow, 100% in the CD3 line, and 99.6% in the CD33 line.  Normal XY male chromosomes noted in all cells analyzed.  His T-cell gene rearrangement is still positive, and in T-cell malignancies, that is very common post transplant, and sometimes you will find that patients alternate between being positive and negative.  These are NOT malignant cells, but could be pre-markers (COULD, not ARE)."

Feb 2013 - three month check up with Moffitt, all levels are good.  We did get the results of the Flow Cytometry report.  The only level that is still very low is the CD4 Helper/Inducer count.  Is it 0.247 and the normal range is 0.410 - 1.590.  The CD4 shows the ability of the body to fight off infection.

For the past few years Bill has been having trouble with his hip.  Pain, discomfort and trouble walking at times.  In April Bill started to get testing done to determine the condition of his hip.  The MRI test showed that Bill's right hip was severely deformed and needed to be replaced.  After much research Bill decided to go down to Pampano Beach, FL to have Dr. Steven E. Naide perform an Anterior Approach Total Hip replacement.  Wednesday May 8, 2013 Bill had a hip replacement.  On Friday May 10, 2013 Bill was discharged from the hospital and went home walking with a walker.  Within a week and a half Bill was only using a cane to assist him while he walked, by three weeks Bill was walking with no assistance.  Throughout the entire process he only took one pain pill and that was the day after the surgery.

On May 29, 2013 Bill had his three month follow up with Dr. Ayala at Moffitt.  All of his counts were perfect and Bill is feeling great.  We asked Dr. Ayala how his other T-PLL patients were and he shared with us that he had four patients that had T-PLL and Bill is the only one that is still living. We asked the Dr. what the chances were of the disease coming back and he said less than 5%. He said Bill is a miracle and will be with us for a long time. 

Today is Bill's 60th Birthday.  His is 2 and 1/2 years post transplant.  Many emotions go through my mind as I think about where we are and where we have come over the last four years.  The best emotion is that Bill is with us today to celebrate his birthday.  Bill may you have a happy day and continue to have many more healthy and happy birthdays.

***
Want to bring you up today date on some of the other folks that we followed that had the dreadful T-PLL.

April 2012 Max Fischer (T-PLL Support Net Blog) went back on Campath due to his T-PLL starting to show signs of recurrence, 2 1/2 years after transplant. Max's response to the Campath was impressive.

Aug - Nov 2012 - Max went through 3 DLI's (donor lymphocyte infusions) in hopes of getting mild GVHD (Graft vs. Host Disease) as the assumption is there will be GVL - Graft vs. Leukemia which will obliterate the T-PLL. The third DLI put Max into acute GVHD impacting his Liver, intestines and Stomach.   Max was admitted to Roswell.

Jan 2013 Shirley Fischer shared the news that she learned that in June of 2011 Mark Vancura (Curing Vancura Blog) passed away, one year and one month post transplant. 

 Jan 20, 2013 - Bill and I had the opportunity to Skype with Max and Shirley.  Max was very weak, but still in fairly good spirits and we were thrilled to finally get to see him and speak with him since his admission to the hospital.  At times he seemed a little confused but all in all it was a great conversation.

Thursday January 24, 2013 Max Fischer passed away at the age of 68 (three years and five months post transplant).  As a caregiver I can only begin to imagine what Shirley is going through after fighting the disease side by side with Max for five years.  We keep in touch with Shirley and know that she is coping with her loss the best she can.  Only time can heal the pain of loss.  We are looking forward to Shirley coming down to Florida for the next winter season so we can meet her in person.
Please keep Shirley in your prayers.

Post # 64 - Response to T-PLL Daughter and Heather

Thanks for your messages.

T-PLL Daughter - I'm sorry for the delay, but some how I missed your question. I would say it is important to go to a facility that has much experience. I hope this message is not to late.

Heather - If you would like to get in touch with me, please leave a comment and provide your contact information.  I proof every post before it is approved to show up on the blog. If you provide contact information, I will not post it to the blog to keep your information private.

Mike is working on the next update and it should be posted in the next week or two.

Post #64 - Happy 2 year Birthday Bill!!!

It is hard to believe it was two years ago today that Bill received his bone marrow transplant.  It is wonderful that Bill is doing well.   Two years is a major milestone, wishing you many more healthy years!!!

Love Mike

Post # 63 - Bill is doing really well!!

The frequency of my posts have been less and less and that is because I don't have a lot to report.   There is not a lot of information out there on success after transplant when dealing with T-PLL.  We do know that several of the blogs that we followed as we started on this journey are no longer updated. Bill and I talked this morning and agreed that we would continue to keep this blog up to date as long as we are able to.  So our commitment to you is that we will blog several times a year to provide updates post transplant.

Since our last post several milestones have been reached.  

 

First, on March 29th Bill had his power port removed.  Similar to having the feeding tube removed, there was apprehension.  The power port was a life line that was there for him in his time of need.  As with all disease, especially cancer, you go on that emotional roller-coaster of am I really done or will I need the port again.  The procedure to remove the port was done in the doctors office and I was allowed to be in the room with him.  The doctor offered the port to us to keep, I opted to take the picture below. 

 

Second, during our visit to Moffitt on Wednesday May 30th Bill was taken off of the remaining medications that he was taking post transplant,  Bactrim and Acyclovir.  The doctor believes that his immune system is getting stronger and he is ready.  Bill also received his 18 month immunizations.  Since Bill is doing so well, our next visit was scheduled for August.   The August visit went well and the next visit was scheduled for November.  The November visit is Bill's two year anniversary post transplant.  He will have his last bone marrow biopsy.

By all accounts Bill looks great and one would never be able to tell that he was sick, he is getting stronger and is trying to do more and more.

The Sunday before Labor Day, we had Bill's sister Margy and her husband Gary, along with friends Mary Ann, Wendy and Scott over for a BBQ.  We had a really nice visit with every one, laughing a lot.  After our guests left Bill mentioned that he felt like he had a fever.  We pulled out the handy dandy thermometer and took his temperature to find out that he had around 100.6  Being Sunday and Monday a holiday we figured we would monitor his condition and call the Dr on Tuesday if necessary.  Through Tuesday morning  his temperature remained between 100 and 102.  We agreed we  should call the doctor but could not figure out which doctor to call.  Should we call Bill's  bone marrow doctor in Tampa, his local oncologist in town or his primary care doctor in town.  For the first time I felt the panic of a new parent with a sick infant and confused on who to call.  During treatment and post transplant we were taught that a fever of 100.6 meant a trip to the emergency room.  I called Moffitt first and left a message, then called the local oncologist and left a message.  Bill decided instead of waiting for a response he would go to the local urgent care.  He was given a flu test which came back negative so they put him on antibiotics and sent him home.  I got a call from Moffitt and they said to see the local oncologist and the local oncologist said to see our primary.     Since Bill had an appointment for his primary doctor on Thursday we figured we would give the antibiotics a chance to work and go to the appointment on Thursday.  From Tuesday to Thursday the fever did not subside and Bill was starting not to eat, was getting weak and developed a cough with no production.  

 

Thursday finally came around and the primary doctor examined Bill and took him off of the antibiotic that the urgent care put him on and gave him two new antibiotics with the instructions that he should go to the emergency room on Friday if the fever does not break.  The doctor also gave Bill a script for a chest x-ray and blood work which Bill had done on Thursday.  Friday afternoon we got the results of the blood work and chest x-ray and the x-ray showed interstitial pneumonia in both lungs and blood work showed elevated white blood cell counts.  By the afternoon the fever was still running around 101 so we decided Bill should get to the emergency room before the week-end began in case he needed testing.  Bill was admitted to the hospital from the emergency room and put on IV antibiotics.  At this point his fever was running between 101 and 104.  The nurse gave Bill Tylenol to bring down the fever and a cooling blanket to reduce his body temperature.  

On Saturday we were talking with the nurse and showed her a picture of Sookie and told her how much Bill missed her only to find out that the hospital had a pet policy.  We were both very surprised and excited that Bill would be able to see the dog.  What was most surprising is that I work at the hospital and I didn't know we had a policy.  One of my employees who has worked at the hospital for over 30 years didn't know either.  In order to bring in the dog several things needed to happen:  Dr. approval, a bath for the dog, papers showing all shots are up to date and approval by security.  That afternoon Sookie came to visit.  She immediately greeted Bill and then became his protector.  Anyone walking into the room was barked at and if they tried to get near Bill she guarded him.  I brought the dog every day.  It was funny to see a dog in the hospital bed with the patient.  My hospital is progressive and understands the healing powers of an animal, especially a personal pet.

On Sunday we asked to have the infectious disease doctor get involved as well as a pulmonoligist.   The infectious disease doctor tested the blood for every virus possible only to get negative results on all the tests.  

Getting back to the story, on Tuesday I called Moffitt to let them know what was going on as I wanted them to be in the loop, hoping that they might be able to provide guidance from a transplant perspective.   Within a few hours Dr. Ayala called me back personally.  He was very concerned and said Bill should have a broncoscopy.  He also said he would assist with getting him transferred to Moffitt if needed.  I finally felt like things were moving in the right direction to find a solution.  Wednesday Bill had a broncoscopy and a biopsy was done to see if they could figure out what was happening.   There was mention that if everything came back negative Bill might need an open lung biopsy, we are grateful that was never necessary.  Thursday the initial biopsy came back negative, the culture was going to take up to six weeks to grow.  I asked the pulmonoligst if what Bill is dealing with could be life threatening and he said yes.  

 

On Thursday it was decided that Bill should be moved to Moffitt and at 6:00pm he was taken by ambulance (as a precaution) and admitted there.  Friday morning I dropped Sookie and Tweedy off with Scott and Wendy and headed to Moffitt for an extended stay. 

 

I must recognize the blessing that Scott and Wendy have been throughout this entire journey.  Words cannot express our gratitude.

When I got to Moffitt I parked the car, went up to the unit and washed my hands before entering.  At that moment I had a flood of emotions where I was lost and not sure of what the next step was. Although everything was familiar I was confused.  I walked in to see Bill and said this all feels very strange.  Last time we were here we were mentally prepared to be here, this time I am not prepared. 

On Friday, Moffitt put in a pic line for blood draws and IV treatments.  I stayed in the room with Bill on the pull out couch like I did the first time around.   The doctor put Bill on an antibiotic called Meripenim, by Sunday morning the fever Bill had for two weeks finally broke.  Sunday evening Bill asked me to go home since there was nothing more that I could do.  Now that the fever broke they were going to observe him for a few more days and then send him home, so I went home.

The fever never came back so Tuesday they decided Bill would be discharged on Wednesday afternoon. At 3:00pm I left work and went to Tampa to pick Bill up and bring him home.

As of this posting Bill is getting stronger and feels good.