Day +13 through Month +3 following HSCT

The First Three Months Post HSCT (Chemotherapy and Stem Cell Transplant) at Clinica Ruiz in Monterrey Mexico

If you are unfamiliar with what has been going on in my life prior to this post, please read the previous five entries on this blog to gain a full understanding of what I have and am going through.  

Please note:  I am 43 years old.  I was diagnosed with multiple sclerosis in 2012.  I likely had it a few years before that.  My disease is progressive and started getting noticeably worse year-after-year starting around the end of 2014.  By worse, I mean my ability to walk kept declining and today, I cannot run, period, have trouble with jumping, walking down stairs, trouble with walking, and when pretty much trying any repetitive motion using my legs.  I can do it (except running) in small doses.  It just takes a bit of effort mentally and physically.  I worked out through my entire decline and modified as I was not able to do certain movements any longer.  The important part is I NEVER STOPPED.

The Expanded Disability Status Scale (EDSS) is a measure the disability status of people with multiple sclerosis.  The link below explains it fully.  I do not feel I fit the scale well, unfortunately, so I will not give myself a score.  My one main issue is walking/gait while the very little else that is going on is minor in comparison.

https://www.va.gov/MS/Professionals/diagnosis/Kurtzke_Expanded_Disability_Status_Scale.asp

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I will be posting blog updates every three months to document my post HSCT recovery experience. This is the first post since coming home from Clinica Ruiz in Monterrey Mexico.

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On Saturday, November 10, 2018, the 13th day after my stem cell transplant, Steven and I took the extremely long one hour and 20 minute flight from Monterrey (where I received HSCT at Clinica Ruiz) to Dallas 😊.  Luckily, neither the Monterrey nor Dallas airports were crowded and plane ride was short because I opted not to wear a mask as had been suggested to help protect me from germs.  You will learn as you read through this post, I am more comfortable than most with calculated risk. 

When we arrived in Dallas, Steven and I had about a mile continuous walk to get to customs.  That was a bit tough for me (not to mention I was anemic at the time).  While my walking is better, it's still pretty bad. I made it with a couple breaks.

I LOVE being back at home.  It was so delightful to return after 28 days away.

On Monday, November 12, 2018 (a day and a half after I returned to Dallas), I went back to my gym (six days a week) and started working full-time from home.  This is not typical of person who just returned home from HSCT, but it was my life before and I thought it would be best to get back to routine (especially exercise) as quickly as possible.   I also felt great and had full energy (not sure how). 

Much to my surprise, it was not hard to get back into CrossFit and Olympic Weightlifting.  I feel that HSCT was more confirmation that my four plus years of continuous workouts make a huge difference in my overall well being.  I was and am very careful to not put my hands near my face unless I have just washed them because in spite of my behavior, I do understand I have a compromised immune system.

The following lists include the good, the interesting, and the not so good things that have happened since I have been home through my three month stem cell transplant birthday.

The Good

• I returned to ALL of my LIFE!

• My walking and other movement is a little better. I have not attempted to walk any kind of distance since I have been home, which is where MS has taken the most from me.  When it gets warmer, I will.

• After working at home full-time for seven weeks after I got home, I returned to work in the office full-time.

• I had and continue to have full energy despite returning to my old bad sleeping habits of going to bed between 10:00 PM -11:00 PM and waking up at 4:15 AM (for 5:00 AM workouts).

• I regularly eat at restaurants, which the doctor at Clinica Ruiz said was ok as long as I do not eat raw food.  I am smart about this regarding where and when I go and extremely lucky to live in a city like Dallas that has a lot of quality restaurants.  Most people do not go out to eat for six months post HSCT and is what is recommended.

The Interesting

• I didn't lose my eyebrows and eyelashes, per se.  From what I could tell, they stopped growing for a time, thinned, and then started to grow around the end of November 2018 and finished growing in around the beginning of January 2019.

• My hair is growing back exactly as it was thin spots and all.  I will likely have the slowest hair growth of most who have had HSCT.

• The right side of my face and only the right side has been breaking out since I was in Mexico. It is highly likely from the bactrim or the acyclovir. I am on acyclovir (anti-viral) bactrim (anti-batcterial) for three more months (total of six+ months).  Thankfully, the breaking out is mild enough that an at home microderm abrasion tool fixes it.

• The blood levels collected on a CBC (complete blood count) and CMP (complete metabolic panel) along with other tests tend to go up and down after HSCT.  I had my blood tested at one month post transplant and I was still anemic and lower/higher on some things than I should have been, which is to be expected for up to two years.  I had the second round of tests done after two months and the levels started getting better.  I will get my third test today.

The Not So Good

• I have fallen a handful of times since I have been home.  Most of the falls are from rubber-soled shoes and stupidity.

• I may be going through menopause from the chemotherapy.  I will not know for sure for a little while longer.

• I have developed  a smidgen of cold intolerance, so every time I go outside and it's cold, I get a little stiff.  There is a good chance this is temporary and as of me writing this post it seems to have gotten a little better already.

I am not working with a doctor here and will not see my neurologist until much later this year.  I get blood tests from my doctor's (general practitioner) office to see how I'm doing and if my doctor needs to see me, she will say. I was regularly doing this before HSCT, so this is not something new for me.  I am still taking a boatload of vitamins.  Some of which I introduced to help me recover from HSCT.  I will take the blood test results from my three month post HSCT blood tests to Sundrops, THE vitamin store https://sundrops.com/, to determine what I should change to help any levels that are too high or low.  I have been going to this vitamin store since the day I was diagnosed.

Since I only exhibit one main MS symptom (mentioned earlier in this post), I wanted to share the following list of MS symptoms from the National MS Society website that are common in many with MS. Please click this link, https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms, to learn more about these symptoms and the less common ones (not listed) along with explanations of each, so you can see what others are dealing with. What I have seen and heard is nothing to be trifled with regarding what people live with who have this disease.

•  Fatigue
•  Walking (Gait) Difficulties
•  Numbness or Tingling
•  Spasticity
•  Weakness
•  Vision Problems
•  Dizziness and Vertigo
•  Bladder Problems
•  Sexual Problems
•  Bowel Problems
•  Pain
•  Cognitive Changes
•  Emotional Changes
•  Depression

There is something called The Roller Coaster that happens to most people who go through HSCT.  To be honest, I do not fully understand it/have not gone through it, so here is a website that explains it.

https://multiplesclerosisnewstoday.com/2017/01/05/phoebes-hsct-story-back-home-last-series/

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Please find pictures and videos below showing some things that have changed for the better.

Hair Growth at + 1 Month

Hair Growth at + 2 Months

Hair Growth at +3 Months

October 2018 - Before HSCT

January 2019 - +3 Months after HSCT

Climbing Stairs with No Railing (Daily Practice)

Until next time...

Day -3 through Day +12 of HSCT

Update not included in previous blog entry...
On October 23, 2018, six days after my second chemo treatment, I was able to walk better (no foot drag in either foot) and further than I had in two years (over a mile unassisted by Steven, my assistive device)!!! "2016 Dena" is back!  I did not want to say anything publicly until I had completed the treatment.  I hope there is more to come, but this is enough for me to consider this treatment extraordinary!

Day -3
This day was the stem cell harvest.  My lower back has started to hurt from the filgrastim (promote stem cell production) shots, which I later found out was a good thing regarding my body's production of stem cells (lower back pain is a good sign or stem cell production).

I have at least one "good"  and the rest "regular" veins, which allowed me to make a choice between having a picc line inserted (see pic below of a picc line) into my neck for stem cell harvesting or to do it through my veins.  I chose my veins.  If I had chosen the picc line, I would have had to have gone under anesthesia to have it placed and to keep it in my neck for five days, receive chemo through it, and eventually my stem cells.  The worst part of having the stem cells harvested through my veins were as follows (The process lasted 4 hours for me.):

• A missed vein/something wasn't right with the first vein in my right arm when we started that caused excruciating pain, but once that was fixed (The famous "Lupitas" [nurses] known for being the best when it comes to finding veins, found a better vein to use.) it was good.
• Having to squeeze a stress ball for 4 continuous hours in my left hand.
• Boredom :) 

My left arm was sore near the end (about 30 minutes before I was allowed to end the process) and the team of doctors let me off the Apherisis (https://en.wikipedia.org/wiki/Apheresis) machine when I was about 85% complete.  It turns out that was perfectly fine since I produced 25 million stem cells per 1 kg of body weight and only needed 1 million stem cells per 1 kg of body weight.

Picc Line Example - Inserted into the Neck (I did not have.)

Apheresis Machine

Harvesting through My Veins

 "Good" Vein and Stress Ball Squeezing

Day -2
Chemo Day 3 - I watched Peaky Blinders, which made the chemo time pass fast.

Day -1
Chemo Day 4 - More Peaky Blinders

I had no ill effects from chemo!!! Not even a nap!  Well, there was hair loss two days after my last chemo (see below).

Before Jail/Neutropenia...

Roos (pronounced Rose) and Me Representing Monterrey

Catholic Cathedral in Monterrey

Day 0
Stem Cell Infusion - My new birthday, October 28, 2018

Beautiful Bag of Stem Cells - I always say I "B positive" just like my blood type! 😋

Stem Cell Birthday Mates and Awesome Caregivers

Stem Cell Mates and Hematologists (Dr. David Gomez Almaguer and Dr. Elias Eugenio Gonzalez)

Stem Cell Mates and Amazing Staff

Day +1
Hair Loss (October 29, 2018)

Shave

Phase 1 New Hair

Phase 2 New Hair  (November 2, 2018)- My pillow was full of hair and had to shave.

Day +2
Figrastim shots started back up on this day to start helping the immune system recover.

Day +3
Blood test on they day and I was not in neutropenia yet (https://es.wikipedia.org/wiki/Neutropenia).  Neutropenia is the state of having abnormally low levels of neutrophils (= disease-fighting white blood cells) in the blood.

Day +4
Nothing to see/say here.

Day +5
Blood test on this day and in neutropenia (found out in my hematology consultation) and did not have any physical effects, so I didn't notice.

Day +6
I noticed neutropenia for the first time.  I felt a little weak for about two hours (I read a book, so it didn't really matter) and fell asleep for 30 minutes.  My second nap since I've been here. 😃Then I got my filgrastim shot and felt completely normal again.

Day +7
I started to feel the familiar tinges of back pain from the filgrastim shots (yea stem cells!). My last day of filgrastim shots as it turned out.

Day +8
I found out that I was out of neutropenia, which means I was allowed to stop filgrastim shots (other patients continued with the shots if they were not out of neutropenia)!  Oh and contrary to what I had read on Facebook in the HSCT rooms I was in for months leading up to this treatment, Dr. David Gomez Almaguer said I could go out to restaurants as long as I eat cooked food only!!!

I will say in my typical fashion, after everything except for the Rituximab  infusion was done, I got the worst headache ever! I had not slept well the night before the blood test that would show I was out of neutropenia because I am a nerd and was so nervous about this test. I'm sure the lack of good sleep and the previous filgrastim (filgrastim can cause headaches) shots were to blame.  I slept cumulative 4 hours throughout the day this day trying to get rid of my headache. That helped some, but the headache was still there.  I ate dinner and went to sleep with the massive headache at 10:00 PM (22:00 for my non-US friends) and finally by 7:15 AM when I awoke, the headache was gone. Of course, stubborn me did not take anything, but to be fair I need a high dosage of anything in order to get relief, so I figured there was no use in taking anything.

Out of Neutropenia

Day +9
I read a book for a while on my balcony while sitting in a shower chair (finally pulled that thing out of the closet and found a great use for it 😊).  I took another nap!  This time for an hour and a half.  I guess I saved those all up for after the hard parts were done.

Day +10
The last step of the process is Rituximab (https://en.wikipedia.org/wiki/Rituximab) infusion (4 hours).

Rituximab Infusion

Day +11
Steven arrived and the food adventures resumed!

Day +12
The doctors went over being what to expect while being at home.  Based on what they said about my immune system recovery, I will work from home for four weeks.  The rest is text book!  

Here's an awesome video Clinica Ruiz made for us.

https://youtu.be/1Ikhb2FAReY

Drugs through Day +2

1. Alin
2. Amal
3. Prazolan
4. Itraconazole
5. Trimetoprim/Sulfametoxazole
6. Acyclovir
7. Emend

Drugs Day +3 drops to the following and goes through day +7 (and a Couple Beyond):

1. Pantoprazole (this one ended on day +7)
2. Itraconazole (this one ended on day +7)
3. Trimetoprim/Sulfametoxazole (Continued taking in Mexico and will continue taking at home every 12 hours 3 days per week [M/W/F].)
4. Aciclovir (Continued taking in Mexico and will continue takingat home daily every 12 hours for 6 months.)

To read more about the drugs...

Alin:  https://www.medicamentos.com.mx/DocHTM/29544.htm

Amal:  https://www.vademecum.es/equivalencia-lista-amal+tablet+8+mg-mexico-a04aa01-mx_1

Prazolan (Pantoprazole):  https://www.vademecum.es/equivalencia-lista-prazolan+grageas+40+mg-mexico-a02bc02-mx_1

Itraconazole:  https://medlineplus.gov/druginfo/meds/a692049.html

Bactrim F (Trimetoprim/Sulfametoxazole):  https://www.drugs.com/bactrim.html

Isavir (Aciclovir):  https://es.wikipedia.org/wiki/Aciclovir

Emend:  https://www.webmd.com/drugs/2/drug-75035/emend-oral/details

Clinica Ruiz is fantastic as is HSCT!  More to come...

Day -13 through -4 of the "Mexican Method" for HSCT in Monterrey, Nueva Leon, Mexico

I mentioned I would blog with great detail, so you have been warned!

Steven and I had lovely introduction to Monterrey including the fact that I'm in a penthouse apartment (see pics below) on what is the 13th floor labeled only as "PH"😜 .  Monterrey is not a touristy city.  It's a big city like Houston probably more so than Dallas.

Monterrey Apartment:

Monterrey Scenes from Mirador del Obispado:

Me and My Nurse, Gaby

Like Dallas and Houston, Monterrey has some fabulous restaurants!  The Clinica Ruiz staff in Monterrey is amazing!  They gave me and Steven excellent restaurant recommendations.  I was able to eat at two, La Caterina, http://www.lacatarina.mx/ (grasshoppers, ants, and worms are on the menu - We tried the grasshoppers, which were pretty good.  Lots of other traditional Mexican food was on the menu. Don't worry!), and La Nacional, http://www.lanacional.net/, before Steven had to return to Dallas today, October 17, 2018.

More Food:

Cocoan - https://cocoan.mx/

Mille Delices - https://www.facebook.com/MilleDelices/

Trust - http://trustfood.mx/

Side note:  I will likely be the only person to gain weight during this treatment. 😊

There was also grocery shopping at HEB, Texas' own.  They still tip the baggers, which was interesting and a huge throwback.  I failed at grocery shopping and relied on my amazing young nurse, Gaby, and Steven.  Thank goodness for Gaby!

This, of course, was the fun part before strong Cyclophosphamide chemotherapy was administered on day -12 and -11. The reason for the countdown in negative numbers is because day zero is the day you are "reborn" with your stem cells and everything is positive there on out.  The entire process will last about 26 days.

Day -13 was my first official day where I got to do "fun" stuff like blood-work, meet the doctors, staff, and fellow HSCTers, explanation of the process, paperwork, chest x-ray, electrocardiogram, consultation with the Neurologist, spirometry test (breathing), consultation with the internal medicine specialist, hematology consultation, and medical history review.

On day -12, I had my first high dose chemo treatment at 2:00 PM (This is how Steven and I fit in one fabulous last restaurant meal).  Chemo is deceiving because all it is, is this benign looking clear liquid, but boy is it something else.  Lucky for us, the clinic gives us an anti-nausea pill an hour before chemo and administers anti-nausea drugs via IV during the chemo process as well as a bladder protection drug, Mesna,  http://chemocare.com/chemotherapy/drug-info/Mesna.aspx. Of the six ladies being treated with me, the reactions to the chemo have been all over the board.  I have been very fortunate with my reaction, which was pretty much none!!!  Who knows why I did so well?  I would like to believe it's because of exercise, diet, and vitamins.  I eat well, but don't practice any special "MS" diets and plan to continue this way :).  Nausea is the most common, but some have had much more severe reactions.  We know this means the best possible results for them.  Sort of like an exorcism of MS.  We must kill the bad immune system.

Day -11, I traded places with one of my fellow HSCTer who was having a really tough time with the chemo and went to have my second treatment at 10:00 AM instead of 2:00 PM.  I felt good going in and not so great coming out.  I did fall asleep for about 10 minutes in the chemo room until my own snoring woke me up.  As soon as I got back to my apartment, I slept for about three hours and felt much better when I awoke.

Chemo Day 1 and 2:

Day -10, I received my first filgrastim subcutaneous medication here in my apartment in my pajamas if I would like, https://www.mayoclinic.org/drugs-supplements/filgrastim-injection-route/description/drg-20071547.  This process went on until at day -4.  Blood samples were taken at this time (day -4).  This is all done so you can have your stem cells harvested, apheresis, https://en.wikipedia.org/wiki/Apheresis.  I will also get two more rounds of chemo to before I get my stem cells back on day 0, which will be reported on in my next blog.

Days of Filgrastim Shots:

Bowling - Bowl Obispado

Barrio Antiguo - https://es.wikipedia.org/wiki/Barrio_Antiguo

 La Sirena Embarazada at Barrio Antiguo

In case you are wondering why I feel so good, it could be luck and so many other variables, but I am given the drugs pictured below daily and they are likely at least part of the reason.

Drugs Day -10 through -4

To read more about the drugs...

Prazolan (Pantoprazol):  https://www.vademecum.es/equivalencia-lista-prazolan+grageas+40+mg-mexico-a02bc02-mx_1

Amal:  https://www.vademecum.es/equivalencia-lista-amal+tablet+8+mg-mexico-a04aa01-mx_1

Alin:  https://www.medicamentos.com.mx/DocHTM/29544.htm

More Drugs Day -7 through -3 and Beyond (aka My Next Blog Post) - Preparation for the Whole Stem Cell Thing

To read more about the drugs...

Bactrim F:  https://www.drugs.com/bactrim.html

Isox:  https://en.wikipedia.org/wiki/Itraconazole

Isavir (Aciclovir):  https://es.wikipedia.org/wiki/Aciclovir

Note:  Since I was not nauseous, I was allowed to drop the anti-nausea medication a few days into taking it.

14 Days Until HSCT and Me on the News

I cannot believe I have only two weeks until I begin HSCT treatment at Clinica Ruiz (https://hsctmexico.com/) in Monterrey, Mexico!  I am really looking forward to it!!!  As a reminder, HSCT is chemotherapy and stem cell therapy.  As they say, "No chemo no cure" meaning no chemo no halting multiple sclerosis (MS).  There is a 78% effective rate of this treatment halting MS in its tracks.  The procedure is best to have as soon as you are diagnosed with MS, but unfortunately, most of us MSers have to search to find help and by the time we learn about this procedure we have typically had the disease for many years.  Like in my case.  A big part of the reason I am blogging my experience is to get the word out about HSCT.  The picture below is breakdown on the treatment I will receive in Mexico from the Clinca Ruiz website.

I strongly believe that vitamins, exercise, and food are necessary to manage this disease, but they alone do not cut it, which is why HSCT is in my future.  I listed food last because it's the area that I am still working on :) and please excuse my State Fair of Texas eating if you saw those pics.  I will not stop annual traditions for MS.

I firmly believe I would not be as mobile as I am considering I have Primary Progressive MS if it weren't for exercise and vitamins.  If you saw my previous blog post, you know I am riddled with lesions all over my brain and spine, which gives me the worst odds at staying physically able.  This brings me to the second item included in this post, which is the spot that aired on WFAA channel 8 this morning in Dallas by Hannah Davis (https://www.wfaa.com/article/about-us/team-bios/hannah-davis/287-333946286) at the place that I believe is fully responsible for me being as good as I am physically, Tiger's Den CrossFit (https://www.tigersdencrossfit.com/).  You will have to scroll past the enormous picture of the the "Mexican Method" to get to my interview with my husband, Steven Latham, included as well. Here's a link to it too:  https://vimeo.com/292718256.

dena the warrior from Hannah Davis on Vimeo.

48 Days to Go!

I'm really looking forward to starting HSCT in 48 days!  To let you all know just how strange MS is/can be, I got my MRI results back last week and I have not had any disease progression (no new new lesions) since my last MRI 2.5 years ago. It's actually been longer than that since I've had disease progression.  I have not taken medication in over 3 years, which was ineffective anyway.  The only thing that has changed with my disease is my disability. That keeps getting worse in spite of stable state of the disease itself. Here are my MRI reports to show you what MS looks like on me.  Please try not to notice my back according to these reports is falling apart. :)