Thursday, April 21, 2016

Day +11 (Apr 21)

Scott & I after placing our pin in the HSCT world map.  We're Done!!

Yesterday (Day 10) - part of the group went through the final stage of the transplant.  We received our Rituximab (Rituxan) IV.  Clinica Ruiz uses Rituximab as a booster to the chemo previously given.  

How does it work?

Rituximab is a monoclonal antibody. It has been used to treat certain types of blood cancer (leukaemia and lymphomas) for several years.
Rituximab works by targeting a certain type of immune cell known as a B cell. B cells are thought to contribute to myelin damage in MS, by reducing the number of B cells rituximab may reduce myelin damage in MS. 
So, in a nutshell, the thought is that any nasty mature B cells not caught by the chemo will be handled with these booster infusions.  I will have 5 more infusions every other month for the year.  

My side effects
For me, and some others, there was some reactions to the drug.  My throat felt like it was starting to swell and close up.  My neck, throat, and head were very itchy and I also felt very congested which brought on coughing and sneezing.  The injected Cortisone into my IV, which helped a lot, but still felt the congestion for most of the day.  I became very sleepy and slept through a bit of the 3 hour infusion.  Once we got home, I tried to attend a small get together, but wasn't feeling well, so came to the apartment and slept and slept and slept. 
I feel better this morning, but still not great.  I noticed some tingling in my hands which I hadn't felt for more than a week and I have a killer headache, so just a little off.

What's Next
As far as Clinica Ruiz is concerned, we are done here.  We leave to come home on 4/23 and I can't wait.  I'm very homesick and extremely bored.  I have a packet of info to give to my local neurologist and will follow up with next steps in the States.
Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Friday, April 15, 2016

Day +5 (Apr 15)

Not a ton to report.  I did have an issue with my blood pressure on day +1.  That whole day I felt off, and Scott decided to check my blood pressure, which was too low. Throughout the day, it just kept dropping.  He ended up calling the doctor when it hit 91/46.  The doctors were quick and thought I was probably dehydrated.  I felt I had been drinking enough water, but definitely not the 3L I was supposed to drink.  So I got out of bed and drank 2 liters of water within about 45 minutes.  The doctor was right - my blood pressure started to rise.  I was happy, because the next step would've been hospitalization which none of us wanted.  At midnight, Paco was knocking at the door to deliver Electrolyte drinks.  I am still impressed at the service and attention we are receiving here.

Since then, I've been drinking soooo much water to make sure it doesn't happen again, and the lowest it's gotten down to since is 99/55.  While that is still low, it's not too bad and I'm keeping an eye on it.

I go back to the clinic today to get my every other day consultation from my blood work. I'm a bit concerned.  I do not feel my WBC count is low enough and I haven't hit the neutropenic stage. Actually, my WBC count was up 2 days ago from the previous measure. I think I just need more education here.  I had thought that the goal, was to pretty much eradicate those numbers.  I will talk to the doctor more today if they are still so high.

Today's Post Consultation Update:  WBC dropped from 13000 to 2300, so I am feeling much better. The process is working.  It's just taking me a little longer than some others.  Dr. Ruiz said I was definitely going Neutropenic and expected my levels to drop some more.  He said I need to keep taking the Filgrastrim shots to keep stabilized.  It's fun to watch the senior Dr. Ruiz at work.  He is definitely the godfather of the team.  His staff hangs on to every word and seems to follow him around, listening and learning.  Love it!!

Oh - Scott & I designed my new FB profile picture.  I think we're going to get t-shirts made too. What do you think?

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Sunday, April 10, 2016

Day 0 - (4/10) My New Birthday

Today is my new birthday.  My stem cell transplant happened today around 2:00 to 2:30. My total stem cell count was 151 Million (46 from round 1 and 105 from round 2).  They wanted me to have at least 75 million, so I way exceeded that number.  I feel really good today.  I think it may be a bit of an adrenaline kick knowing that today is the day.  

Below are some photos we took to celebrate the day.

Posing with Dr. Manuel Priesca and Dr. Andres Leon

Thumbs up with Nurse Laura

Gangsta's in the Chemo Room

4/10/16 Birthday Crew - Julie Miller, Bill Anderson, Deb Lee, Me, Norman Kulø  

Dr. Priesca, Julie Miller, Bill Anderson, Deb Lee, Me, Norman Kulø, Dr. Leon

We did it!!!!!

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Saturday, April 9, 2016

Day -1 (Apr 9)

It's been a few tough days.  I haven't updated, but will try to catch you up now.

  • April 5, 2016 - I was taken to Puebla Hospital in order to have the catheter (PIC Line) surgery. Afterwards, I went through a short recovery and then taken back to the apartment to rest. 
PIC Line
  • April 6, 2016 - We stayed in the apartments to rest from the surgery.  Pretty non-eventful.
    Apheresis Machine
  • April 7, 2016 - Cell Harvesting day.  We were driven back to Clinica Ruiz and hooked up to the apheresis machine.  I was selected to be placed on a new machine, where there were two instructors guiding the doctors through the process, so I was surrounded by a lot of people throughout the whole process.  After a few hours, they sent me away to have lunch while they counted my stem cells.  If I had enough, I would start chemo right after, but I was about 30 million short of where I needed to be. I was given another Filgrastim shot and sent back to the apartment.  I was initially pretty upset as everyone in Group 1A had gotten their needed cells, except me.  I had to have a talk with myself stating I was going to be okay and my turn would come soon.  Soon after, I received a call from Bhakti (Ragesh's wife) stating that none of Group 1B had gotten to their numbers, so we were all going through the same. 

My Stem Cells
  • April 8, 2016 - Cell Harvesting Day 2.  I was again hooked up to an apheresis machine, but one of the tubes from my PIC line was not working.  The doctor had to remove my stitches in order to slightly adjust the PIC line and get the blood flowing.  It worked for a while, but was very slow.  By removing my stitches, it would mean that they would have to completely remove the PIC line after chemo that day as it would be unsafe to continue with it like that any longer.  However, about an hour into the apheresis process, I experienced a sharp pain in my chest and could feel a warm wet feeling. I looked down and saw blood soaking my shirt.  The doctor was very close by and was able to get it under control, but what this meant was that the PIC line was blown and had to be removed right then. He was able to insert catheters into both of my arms and route the apheresis that way. Definitely not ideal, but it worked.  After lunch, Nurse Laura came in with my chemo, so I knew I was good to go.  I ended up with 105 million stem cells... YAY -  We sat there for another 5 hours while I received my chemo (round 3).

  • April 9, 2016 - Last Day of Chemo (round 4).  Got very nauseous today, but Scott & I did share some M&M's earlier.  I haven't eaten chocolate for about a year, so it was probably a bad decision to try to mix my chemo with M&Ms.  

Tomorrow will be my new birthday.  April 10, 2016.  Wish me luck

Monday, April 4, 2016

Day -5 (Apr 4) Update

I haven't updated the blog for the past few days really because there wasn't much to update. We have been receiving our Filgrastim shots twice per day to stimulate stem cell production. I've been waking up with some pretty intense headaches and seem to have nausea on and off, but overall, this is not bad at all.

Lauren went home on Saturday morning. On Friday, she went with some of the team to see parts of Puebla (pictures below). Looks like she had fun. Thanks to Fanny, Shlomo, Chris and Patti for letting her tag along. I wasn't feeling well, so Scott & I stayed in.



Saturday - Most of group 2 went to the rooftop of the apartments where we have a fantastic view of the volcano Popocatepetl. Some of Bill's friends live in Mexico and came by to say hi to everyone and we were even entertained by David who played the hang drum for us.  All in all, it was a very nice time with my new friends.  

Ragesh & Fanny

John & Norman

Scott & Brid
Norman & Hege

Bhakti took some exquisite photos of Popo that she has generously said I could re-post. 

Drug update for yesterday and the next few days.  

Day -6
  • Filgrastim: A granulocyte colony-stimulating factor analog used to stimulate the proliferation and differentiation of granulocytes; it is a pharmaceutical analog of naturally occurring G-CSF. It is produced by recombinant DNA technology.
  • Dexamethasone: A type of steroid medication.
  • Ondansetron: Marketed under the brand name Zofran, is a medication used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, or surgery
  • Pantoprazole: Sold under the brand name Protonix among others, is used for short-term treatment of erosive esophagitis associated with gastroesophageal reflux disease
  • Itraconazole: A triazole antifungal agent prescribed to patients with fungal infections. 
  • Trimetoprim/Sulfametoxazol: An antibiotic used mainly in the treatment of bladder infections. 
  • AcyclovirAn antiviral medication. 

Day -5 and Day-4 are a repeat of Day -6 less the Dexamethasone

Tomorrow I will get the catheter placed in my neck in order to prep for the apheresis (cell harvesting).  Not looking forward to that, but apparently it will be under local anesthesia which is good.  

Well, that's about it.  I'll probably update after my catheter placement.  We'll see how it goes.