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. :)

 

Blog Ressurection Inaugural Post - My Journey with Multiple Sclerosis that Led Me to HSCT

I'm bringing back the blog of essentially my youth.  I started this bizatch in 2006, attempted to reboot it in late 2010/early 2011, and now here I am back in 2018, so right on track! Oh and don't you worry! I left all previous posts intact, so you could learn more about my more youthful self. :)

I will now be using this blog to document my MS (Multiple Sclerosis) and HSCT (Autologous Hematopoietic Stem Cell Transplant) experience (I will explain HSCT later in this post.).  I am scheduled to start HSCT on October 15, 2018. This is blog post serves as a documented history of my experience with MS, what led me to HSCT, and what HSCT is.

History of My Multiple Sclerosis...

• My first encounter with MS was likely in 2008, but I would have never thought numb feet after a run was a sign of a significant autoimmune disease.  The numbness lasted for a couple days and went away.  
• I got numb feet again in 2009 after walking in the mall in heels for two hours.  In this case, I thought my feet were numb because I stupidly chose to walk for two hours in heels.  That numbness lasted a week and went away.  
• In 2010, I was training for a marathon.  Each time my hips would feel tight and cause issues with running, I thought I had a running issue.  The Marine Corps marathon I ran in 2010 was really tough especially the last 13 miles.  I had to stop and stretch about every quarter mile.  My legs just weren't right. By the time I got to the finish line I could barely walk and kept tripping.  
• In late 2011, I could only run a couple miles before my legs would not work.
• I stopped running at the end of 2011 because I could not do it any longer.  
• I thought about getting an MRI to see if I had an issue with my legs, but didn't want to spend the $1,800 it would have cost me at that time.  
• Fast forward to the beginning of 2012 when all hell broke loose.  The left side of the trunk of my body went numb, I lost partial hearing in my left ear, and started to notice my legs were hard to lift up and felt like they weighed a ton.  I went to see my general practitioner and he seemed very concerned and said I needed to see a neurologist.  I made an appointment with a neurologist who scheduled an MRI.  Days before the MRI my hearing came back after being partially impaired for about a month.  That's when I was like, "Oh shit! I have a serious issue!!!".  
• The MRI showed lesions all over my brain and cervical spine, which made me positive for having MS.  I was first diagnosed with Relapsing Remitting MS, but I have not had another relapse since my acute attack in 2012.  
• It's a long story, but I left my first neurologist who seemed to have little interest in listening to me and helping me after she had me on Copaxone (disease modifying therapy) for three years.  That disease modifying therapy was not effective after the first two years, but my not good doctor left me on it for an additional year.  I suppose she needed it for her drug studies.  Most neurologists would take a patient off an ineffective drug after two years.  Anyway, I left my neurologist and went with a different one who listens to me and didn't freak out when I said I wanted to manage this disease with vitamins, diet and exercise.
• Today, I'm lucky if I can walk a continuous quarter mile.

What I did/do to fight this disease...

I went straight to the vitamin store with my mom after I was diagnosed in 2012 and asked them to give me everything they had to help me with MS and I didn't care what the cost was.  I take 18 different vitamins to the tune of 31 pills a day to keep my vitamin levels in the normal to good range.  I get blood tested (lots and lots of testing) often to track how I'm doing and to see if I need change out any vitamins to help get high or low level items back on track.  I'm proud to say I have gotten my vitamin D level to beyond "normal".  I am in the "good" zone with that.  Vitamin D is very important for everyone especially those of us with MS.

In 2012, I started exercising at home with my Xbox to keep moving.  In 2014, a good friend suggested I give CrossFit a try.  I had heard mixed reviews and didn't know how I would do with no A/C.  I tried it for the first time in June of 2014.  It wasn't easy, but CrossFit allows everyone to work at their own level, so I started out small doing what I could do.  I was very wobbly (MS balance issues and weak core strength) and struggled to get the movements, but I eventually got them.  My wonderful husband, Steven, attended with me.  We started going 3-4 days a week for our first year and half or so and then I started to realize how much this type of working out was helping me, so we added a fifth day.  I also started mixing CrossFit and Olympic weightlifting (3 days of CrossFit and 2 days of Olympic weightlifting).  In the last six months, it was obvious that without working out I do not move as well, so we added a sixth day.  I now do CrossFit three days a week and Olympic weightlifting three days a week and am no longer wobbly like I was when I started.  It's is truly amazing with great coaches what a girl with MS that includes a severe walking disability can do!  Sometimes my movements are a little more strict than I would like and less fluid than others, but I do it!  I am in the best shape of my life because of this!  I just can't walk much.

Next, I started tackling my eating in 2015.  I spoke to a dietician to eat better to manage MS. As a result, I cleaned up my diet and my eating got a lot better.  I LOVE food, so the diet part is not 100% perfect, but much better than it was.  It is fascinating how much food can affect you.  I did not realize this until after I cleaned up my diet.  I really do believe your gut health is one of the most important factors in staying healthy overall.

This is where HSCT comes in...

Sadly, with all of this, my walking continues to decline.

There are no drugs that will bring back my walking ability only ONE drug to MAYBE slow the progression of MS. The drugs have a lot of side effects and I'm not going to risk getting liver disease or something worse for a drug with very low efficacy.  Personally, I feel like I have the disease under control, but I cannot touch the disability.

Recently, for the second time I asked my doctor how I could be considered relapsing remitting for MS if I have not had a relapse since 2012 when the acute attack happened and I got better, but my walking ability continues to decline.  He agreed that I fit best as Primary Progressive MS.  Regardless, I'm definitely progressing and not relapsing.

I found myself in a desperate state three weeks ago when I came to terms with the fact that I'm getting progressively worse and I am starting to decline more rapidly.  I cannot travel like I want and daily life requires planning. I looked online for help with progressive MS and found almost nothing. A lot of times physical therapy is recommended, but when I went years back and told them what I do for working out there was nothing more they could offer me because I was already doing it all. After I started panicking a few weeks ago, I and joined a FB (Facebook) private room for people with Primary Progressive MS.  The room's admin had HSCT last year and said it was the best thing he had ever done.  He suggested other rooms to join on FB, which I did including a room about HSCT and it seems HSCT is my only option for doing anything about my disease.  I applied for HSCT at Clinica Ruiz in Mexico (one of two clinics in the world available who is willing to work with progressive MS) that day for treatment, got a response from Clinica Ruiz the next day, and booked it on the spot. This procedure is very expensive, but I didn't care because I have no other options.  I took out a huge loan to pay for this and cannot really afford to pay it back, which is why I am fundraising for this.
Below is the link for my fundraising page.

Dena's Go Fund Me Page

Here is the link to Clinica Ruiz where I am starting my HSCT treatment on October 15, 2018:

https://hsctmexico.com/

The information below is from their website, which explains what I am doing.

What happens during HSCT?

What we will do to treat your condition in Clinica Ruiz, is remove auto-toxic immune cells from your system using both pharmacological as well as biotechnological drugs, followed by reinfusion of healthy precursor hematopoietic stem cells, known as the autograft, to begin producing new immune lymphocytes that will not attack cells or tissues of the body.



In an early step of the treatment process, we will mobilize hematopoietic stem cells to your peripheral blood, and then harvest them by means of apheresis; a non-surgical procedure similar to dialysis where a patient’s blood is passed through a filtering machine by IV. Most patients can collect enough stem cells in a single sitting, but occasionally more than a single day may be required for the apheresis procedure.



After your stem cells have been collected, chemotherapy is administered to further eliminate immune cells responsible for the underlying autoimmune disease. Since drugs cannot selectively destroy auto-toxic immune cells, the only way to assure their removal is by wiping out all forms of dividing immune cells. This is why you will experience a temporary transient immunodeficiency during which you will have to undertake special precautions to avoid and prevent infection.



When the cleaning of the immune cells is completed, your hematopoietic stem cell autograft will be retrieved from storage and infused back into your bloodstream. Stem cells have the ability to naturally “home” into your bone marrow and start dividing again in a healthy manner to repopulate your system with new immune cells. This is known as engraftment.



After a period of time your immune system will be restored with healthy cells, and devoid of auto-toxic cells. The aim of the entire HSCT treatment process is to stop the immune system from causing damage of self.

How does HSCT work?

All immune cells in the body originate from a common progenitor, known as a hematopoietic stem cell (HSC) found in the bone marrow. As the HSC divides, it gives rise to a wide diversity of immune cell repertoire that all serve specific immune functions. Many of these immune cells, known as lymphocytes, are capable of recognizing and defending against foreign pathogens that enter the body.



For an, as yet, unknown reason, some of the lymphocyte immune cells develop a corrupted memory in which they become self-intolerant and attack & damage different cells and tissues of the body. In the same manner as normal cells divide, so does the mutant auto-toxic cell clone, giving rise to a large population of autoreactive cells that mediate damage of different normal structures.



Autoimmune damage of myelin is associated to MS, NMO, CIDP and TM. This is the fundamental mechanism that underlies autoimmune disease and using chemotherapy to eliminate these self-intolerant auto-toxic lymphocytes is the key to also halting the underlying autoimmune disease. The immune cells eliminated from the body are eventually replaced with new immune cells created in the bone marrow, which do not contain toxic corrupted cells, thereby halting the underlying disease activity.

What are the benefits of HSCT?

The aim of the entire HSCT treatment process is to stop the immune system from causing damage of the myelin so that proper electrical conduction within the nervous system is restored. In addition to the halting of the underlying autoimmune disease, the reinstatement of appropriate healthy signaling from nerves to muscles often results in clinical and symptomatic improvement.