Stem Cell Transplant ( Sct )

[Froggie]

You're a strong and fearless person ((((Deb)))), I'm not surprised you chose such a treatment ... a fight fire with fire strategie ... It's really something when they tell us it is incurable, something happens in us that makes us fight and find some hope ... yeah ok, we all have our downs at times, but that's temporary. You have told me often not to take those words too seriously as we have seen what progress has done so far. Keep going, you know you'll get through all this.

 

[intothelight]

Completed my third bone marrow biopsy on the 17th and Monday I got the results. I was hoping for a complete response (zero cancerous plasma cells), but I ended up with a good partial response. This means that I have less than 5 percent cancerous plasma cells in my marrow and they are no longer increasing. Basically a partial remission.

This means that I can proceed with the transplant. I meet with the oncologist that will be in charge of the transplant next Monday, and then they will schedule a meeting with the transplant team. Looks like the beginning of November will be when the transplant is done.

Struggling with a few things that are becoming more real. I got copies of all of my pathology reports and the genetic analysis of my cancer was a little disconcerting. Due to some chromosomal abnormalities (like cancer has normal chromosomes) it was rated as aggressive. But not as aggressive as some types. So a mixed bag.

The other realities that I am dealing with are:

Having a port put in and will have to keep it at least six months
Knowing I will loose my hair
Knowing that I can expect to be in the hospital at least three weeks
The side effects of the chemo I will get
The types of infections that I can get
The infection control measures that I have to adhere to when I return home
The fact that I will have to have all of my immunizations redone after six month or so
The realization this procedure may or may not ensure a complete remission and no one knows how long

I know that I am receiving the best and most aggressive treatment. So many questions are going through my head. There is so much information out there and so many clinical trials that I sometimes can overload myself with information. Feel sorry for my doctor's because I am a question machine.

I know that using my own stem cells for transplantation reduces the risk of graft versus host disease, but it also seems counter intuitive since these sames cells also "changed" and allowed the cancer in the first place. So much to wrap my head around. I've learned far more about stem cells that I ever thought that I would. Also am getting really good at reading my own lab reports.

I really am glad that I get to meet with the team prior to the procedure when I know I will still be rational and they can see that I am not a total nut job. I do not like what I become when the steroids and chemo start. It is really hard to voluntarily put yourself in a position where you know that your PTSD is going to run rampant.

Will also make sure my family, friends and the nurses make sure I do not have access my computer or phone if I get too bad. Hopefully they will have plenty of elephant tranquilizer on hand.

Nervous and hopeful at the same time. Hopefully the nervousness will decrease with understanding.

 

[Deleted member 12723]

(((Deb))) I pray your nervousness and anxiety do not get so bad before you have the operation. You have an overloaded plate. No wonder you are so antsy to get things done before. No wonder you are so eager to get everything done. Your head must be literally swimming in lists of things to do and to get done.

I hope you also take some time for yourself before you have the operation. Thanks so much fo keeping us informed about what you are experiencing. What are you going to do, three weeks in the hospital?

You will have alot of good and nurturing support, your family and friends close by. How did your drivers

liscence photo shoot go? I hope you got a good picture of yourself. You are going to be very busy until it is time for the operation. I am glad that you are so proactive with your health care team. Information is power.

Time is going so fast it will be time before you know it. I really hope the nervousness goes away here and there and you will get breaks from it. I am glad you are fighting so hard to live a good life. I am so glad that you are taking such good care of your health, in every possible way. I will keep on praying for you and for your family.

I am with you in spirit rooting you on in the background. It is like you are getting ready to go on a long journey. I will miss you when you are not around the forum. I hope your family gives you lots of company when you are in the hospital. I wish I could be a support person for you. I will leave you notes and pictures on the thread for you. Much love, hugs and prayers.

 

[Froggie]

Standing by you my dear friend. We sometimes have to go through agressive treatments to handle this battle and put us on the winning side. You have taken good and wise decisions, you know yourself and you have taken the precautions to reduce over the limit stress factors.

Listening and walking by your side.

 

[CraftyCath]

I can only congratulate you for agreeing to have the aggressive treatment Deb.

I truly hope and pray it will work and you will be better soon. My thoughts and prayers are with you. x

 

[The Albatross]

:hug: Do what you can, and be kind to yourself as you are able. Some things are scary and intimidating... but we're gonna get you through this Deb. Stress reduction is going to be important. ;)

 

[Nicolette]

May

This means that I have less than 5 percent cancerous plasma cells in my marrow and they are no longer increasing. Basically a partial remission.

This means that I can proceed with the transplant.

While I know this is not comforting Deb; it's a great step in the right direction and I know of a person who was completely cured with SCT. I knew a bit but she used the umbilical cord of her brother's baby - I don't understand how you can use your own.

While I am a bit self absorbed at present you are in my thoughts and I wish you all the mental strength you need to get through this. You definitely have the courage and spirit so keep fighting. I have faith in you! :hug:

 

[intothelight]

I understand the reason that a person's own stem cells are used as it substantially lowers the risk for rejection or "graft versus host" disease. At the same time I am wondering why my own stem cells are being used to battle cancer, when I have cancer? :confused:

I think that is why I am so disappointed in not having a complete response as in no cancer cells. I know the blast of chemo that I get will destroy everything in my bone marrow, but how do I know that some mutated stem cells are not being put back in?

These are all questions that I am going to be asking the oncologist. Also, I have found some really interesting articles on the affect of stress hormones and their impact on multiple myeloma, especially the fact that epinephrine seems to fuel the growth of myeloma cells and the increase in glucose that results from the "fight or flight" response is a fuel that cancer loves. (Pet scans use radioactive glucose to target and identify cell abnormality).

I know that I am not a scientist, but my oncologist has been hammering me for the past seven months to get a handle on my stress and anxiety. It is a lot easier said than done and I am using everything in my "tool" box that I can to reduce stress and learn to manage anxiety. But in all honesty, I am a stress machine. Increase my stress and the "fight or flight" response kicks in almost immediately. At some level, I know that PTSD is literally killing me.

There is also a huge increase in multiple myeloma for 9-11 responders, but I haven't found out much in regard to 9-11 victims. But then some of the 9-11 responders could be suffering the effects of environmental exposures.

When you read about the physiology of the "fight or flight" response and how much of our entire body it affects it is absolutely eye opening. For a long time doctors have known that stress can kill, but it is the biological response to stress that kills and damages.

For all of us that have an exaggerated "fight or flight" response, even to little stressers, it is no wonder to see the problems associated with the digestive tract, diabetes, immunological diseases (RA, Fibromyalgia, CFS), high blood pressure, cardiac problems, and even cancer.

Not saying that PTSD is the cause of these as I am sure there are other genetic, lifestyle, environmental, etc. factors that play into this. But I know for me, this is something I tend to explore further as the mind/body connection cannot be denied.

Regardless, I HAVE to get a handle on my own PTSD symptoms as I believe at some level the length of remission to be gained from this transplant will be very dependent on how I control my stress and my own response.

Actually, this has an impact on everyone of us that has PTSD, as it definitely is damaging our physical health, along with the emotional and mental health.

 

[Deleted member 12723]

Thinking of you today (((Deb))). I hope you are still feeling good and the time on the boat made you feel refreshed and relaxed. I am not religous but I am praying for you and your family. Big hugs.

 

[CraftyCath]

Thinking of you Deb and sending you love.

 

[intothelight]

Met with the transplant oncologist today to discuss the things that will be coming up. I have to have cardiac and kidney tests as these are required of all transplant patients to ensure they are strong enough to undergo the procedure. I have no concerns here as I have no problems. I can throw some PVC's from time to time, but they are another "stress" related reaction and are fairly harmless.

He had to go over the risks associated with this procedure and again no surprises. I know the chemo that is used can cause heart and liver damage, and then there is the risk of infection. But with my age and overall health the risk of death is minimal.

We did end up discussing my biggest fear and that I was afraid of the steroids and my own reaction. He was quite agreeable to using the minimal does and then other medication as an alternative. There will still be some steroid use, but he made notes to research minimal doses and other alternatives.

The psychiatrist has been added to the team and my oncologist was very pleased that I was so open with him. A lot of cancer patients suffer psychologically from having cancer and suffer in silence. Those with previously diagnosed mental illness will not mention it a lot of times, and the treatments can really exacerbate symptoms. It's funny to be sitting there and discussing pathology reports, genetic analysis, and exactly how the transplant will work; and then have to explain how certain things can turn me into a panicked, stuttering, person who is unable to comprehend what people say, written words and at times to completely check out.

For me the hardest part of PTSD is explaining it, in terms that people can understand. It was nice to have a doctor who really wanted to understand what caused it, how it affected me, what I did to control it and what the medical team could do to assist me during what is a very stressful medical procedure. It was also nice just to be me, and explain something that is a part of my life, but that doesn't define me. Something that I need to be prepared to deal with, just like I need to be prepared to deal with the side effects of the treatment.

He did ask me if I wanted to donate my hair to "Locks of Love". Its funny to be a cancer patient and being a done. But the truth is, the chemo used to destroy my marrow will cause me to lose all my hair. So before I go in for the big chemo blast, I will shave my head and make the donation. One plus is I won't have to shave my legs or under my arms for a while. :)

 

[Nicolette]

All sounds good so far Deb and I like the spirit of 'Locks of Love' - it brought a tear to my eye.

You are one strong, brave lady and we are all here cheering on the sidelines for you. :hug: