Saturday, October 25, 2014

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

Wednesday, August 13, 2014

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.

Saturday, May 3, 2014

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 27th 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