Janet Gilbert

First post: Mar 30, 2022 Latest post: Oct 18, 2022
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Hello Everyone ,

Jan has made a decision to provide a centralize place for updates to occur keeping you informed on Jan’s journey , or whatever terms you may want to use. Hopefully we can keep providing a platform for people to stay in touch , provide support/feedback and education , if you have specific questions will be glad to advise what we know.

First , Jan wanted to thank you very much , for the loving support and comments from you all. She is extremely humble knowing each of you have families , jobs and your own issues to take care of and yet ,you find time to send special love , prays and warm thoughts.

I (Dan Gilbert , husband) will be writing updates or comments whenever Jan is to tired or just having a challenging day.😰😰

Brief update and will provide more later .

Jan was first diagnosed in January on 2010 with CLL , trisomy 12. She had planned a trip to see her mum in February in Australia , but had been feeling tired for awhile and decided to get a quick checkup before she left for her travels - fortunately her general doctor pickup an issue and later talking to a specialist it was determine she had CLL. It surprised us all but like Jan does , she evaluated and decided to get on with life and look for solutions. Attitude was amazing.

She decided to go on her trip to Australia , taking precautions and medications with her with a promise she would go into a program for CLL at Moffitt once returning. (Excellent Hospital and Doctors and support personnel ) It was a wonderful visit with her mum , the last time before she past away shortly thereafter which was a blessing. Her sisters , brothers ,nephews , nieces , friends and other family members kept her busy with a lot of exciting times. She without a doubt had a memorable visits filled with joy and love. Her Australia family and friends are extremely special for all the obvious reasons and so many more.

When she returned from Australia she started a program for 18 months with infusions , testing her bone marrow continually and all the other exciting events which goes along with the journey. She was in a special program at Moffitt Cancer Facility in Tampa Fl. The program had 45 people , who she developed a lot of friendships with , along with her Doctor Pinella, other doctors, nurses , support people and other patients. Friendships she has to this day.

The program was supposed to put the CLL at bay for 1 to 3 years with another program later. She had to take chemo pills and other medications because of array of issues but she handling the entire process with a tremendous attitude and with a loving heart. As people who are with their love ones during the treatment, there are alot of up and downs but in the end , out of 45 in the program , after 10 years she was the last one to go back into a relapse, which we were very blessed and give all the credit to God. Her wonderful family throughout the world and her many loving, special friends we have a special part in our hearts for all the support during this time.

Brining you up to date , in January of 2022 , after fatigue increased, sick at times , with a combination of other issues she went to Moffitt Cancer Facility and after bone Marrow , scans of a wide range , blood exams and other items they reviewed , she was determined to have relapse with CLL -13q-17 variation. It had changed from original diagnosis which happens with CLL.

It was determine that her protocol would be to start a targeted medication called Imbruvica(ibrutinib) along with support medications promptly. They did not want to have they CLL transform further.

Unfortunately, as we all know plans don’t always go the direction you hope. Due to the costs of the medication , it had to be approved by our insurances companies and Johnson & Johnson. Due to a assortment of errors , after several tries trying to get the sign offs and paper work corrected , we hope to know on a sign off by end of this week or next. She will than start the program taking the pills orally , with infusions of other drugs for support and building up her immune system for 30 days. The plan is to consider another drug in 30 to 60 days orally and with other infusions. Untimely the goal is to get into a third drug , or program within 6 months. The reason she wants to go with a target treatment , she will not have to deal with the CHOP program , which is a little more challenging.

In the meantime , we have had several events when Jan’s body begin to fight back. High temperatures , fatigue , immune issues caused her to be in the hospital for four days two weeks ago. She was given assortment of fluids , antibiotics , blood infusion etc. to build back her body. We left the Moffitt but we went back last Sunday getting released the next morning because of temperatures, de hydration , appetite issues etc. she was given additional fluids ,etc. and we are back at home now.

She is sleeping most days , temperature remains , shivers , sweats , etc. and we are waiting for the medications to start the program. She is ready to take the drugs or whatever is necessary to get the better. She has been told by her Doctor she will never go into a remission of sorts again and will continual be in a program getting her immune system strong and knocking back the enemy. CLL - as we all know , because of our love ones who have taken their own journeys to fight the enemy before, a lot of your love one’s have won the battles and she is looking forward to feeling better too. Her attitude is strong and she is ready for the journey no matter where it takes her.

She wanted me to let you know that your prays, thoughts , love , wonderful messages have kept her sane and again feeling so humble. She loves you all so
much and she misses the activities from work , to activities in the neighborhood , to seeing friends , talking to family and loves ones. The love has kept her moving in the right direction ,even though some days are challenging but she can’t wait to get out and see everyone again.

Currently her immune system is non existed. She has been asked to stay confined and unfortunately away from people , which has been tough for Jan.
She wanted a simple way to communicate to you all and at times , depending on how she feels , by reaching out through a better communication channel. Unfortunately , we don’t know what day she can do this and the past several weeks has been a lot less than Jan wanted to do. She apologizes for not staying in touch and reaching out to you acknowledging all the love. She wanted to once again say thank you and she loves you all.

As we write comments about Jan’s travels , remember her husband Dan , me 😜😜 , has no writing capabilities , as people who know me have seen before.
Regardless, we will do our best to keep you informed and answer any questions we have possible.

Stay tune - lots of Love❤️❤️❤️ from Jan - kisses , hugs and she wanted to let you know she is on your shoulder, in spirit , watching over you - as always please smile and as you always do , tell your love ones you love them .❤️❤️😘😘