Hey Craig...
I believe that you have had some limited contact with Warwick... I also sent you an invitation to join us at our last meeting held only last Sunday evening. However, you did not manage to attend on that occasion...
In my view, the best way to learn the views of others is to ask them directly... Warwick was there, and he is actually the person with the greatest amount of general knowledge available in our small group because he is still dealing with the after-affects of being a Post ASCT beneficiary.
Craig, you also have both mine and Warwick's phone numbers should you wish to speak with either of us directly...
Peter MAC is Australia's ONLY truly dedicated cancer hospital in Australia. However, Warwick will tell you I am sure that the care and level of support he received was second to none at Westmead Hospital... Warwick has also met personally with many other MPN patient's during his treatment journey...
To answer your previous question to me, "Why did I choose to Wait & Watch'?"
I received information that the way I had chosen to manage my illness, (with diet & lifestyle changes), had apparently moved me from 'Intermediate 2 to Intermediate 1' after my second BMB provided that conclusion...
My own research has relayed and reiterated to me just how involved it is to go through the ASCT procedure. The Pre-Treatment in preparation, and the immediate convalescence period (100 days after that event). One needs a pristine environ in order to avoid all very simple and or complex forms of possible infection, after the event and ongoing for many years, quite possibly...
Today, (& my road accident & convalescence aside), I have managed my illness quite well to this point, I am now 65yo, and still would prefer not to go down the ASCT path unless it became completely necessary... My choice is about determining if the 'Quality of Life' I have today is better than the possible alternative of unknown parameters(?) In my case, I am happy with the former... ATM...
Managing my Post ET / MF with Ruxolitinib alone means that I am constantly in a state of living with a "Suppressed Immune System" and that comes with some problems too... For e.g. Everywhere I go in public (if indoors), I always wear a mask! Still I am very careful with all safety & sanitary protocol applications...
It's just easier that way, is what I've found... I have been the recipient of germs from others during my journey too... COVID lasted almost 2 weeks & it took another two just to start to feel my old self again... Don't ask me about Gastro' issues please...
Craig, happy to chat anytime, as is Warwick I am sure...
If you decide that the ASCT path is your ONLY option, whichever group or Doctor you ultimately choose, ALL that is really important is that you find you can amicably work well with them...
Craig, as I mentioned previously, MPNs are first and foremost "Chronic Illnesses" and are likely to be with us for the rest of our lives, and we will need good relations with our medical teams into the future too...
Always here if you need to chat buddy...
Best wishes
Steve
Re: Best transplant hospital and best transplant team
-
MPN-MATE Admin
- Site Admin
- Posts: 633
- Joined: Mon Apr 22, 2019 11:38 pm
Re: Best transplant hospital and best transplant team
Hi Steve,
Thanks for your considered response.
I had a good chat with Warwick, which really helped clarify some of my thoughts. It seems like you and I have different takeaways from hearing his story.
Once again I feel that it has highlighted that everyone's MPN journey is individual and no one is the same.
I understand your perspective and the decision you've made regarding your treatment. Since our diseases share similar genetics, it would be interesting to get an opinion from your hematologist to see if they concur with the five I have seen who recommend going to transplant soon. Are you able to share who you see?
Thanks again for your support.
Thanks for your considered response.
I had a good chat with Warwick, which really helped clarify some of my thoughts. It seems like you and I have different takeaways from hearing his story.
Once again I feel that it has highlighted that everyone's MPN journey is individual and no one is the same.
I understand your perspective and the decision you've made regarding your treatment. Since our diseases share similar genetics, it would be interesting to get an opinion from your hematologist to see if they concur with the five I have seen who recommend going to transplant soon. Are you able to share who you see?
Thanks again for your support.
-
MPN-MATE Admin
- Site Admin
- Posts: 633
- Joined: Mon Apr 22, 2019 11:38 pm
Re: Best transplant hospital and best transplant team
Hey Craig...
Just wrote you out a lengthy reply... However, I had to take a call... and when I returned, the FORUM had Logged me out, & vaporised my Reply in the process...
As it is now quite late... I shall have write you again tomorrow as I really need of some sleep...
Pls accept my apologies & I shall reply again shortly...
Night
Steve
Just wrote you out a lengthy reply... However, I had to take a call... and when I returned, the FORUM had Logged me out, & vaporised my Reply in the process...
As it is now quite late... I shall have write you again tomorrow as I really need of some sleep...
Pls accept my apologies & I shall reply again shortly...
Night
Steve
-
MPN-MATE Admin
- Site Admin
- Posts: 633
- Joined: Mon Apr 22, 2019 11:38 pm
Re: Best transplant hospital and best transplant team
Afternoon Craig,
Not sure what you may have meant concerning your original Post or was it just the last Post you had made to this Post?
Did you mean the entire Post (my responses included?) Not sure why you would want to delete?
Please clarify for me ...
Regards
Steve
Not sure what you may have meant concerning your original Post or was it just the last Post you had made to this Post?
Did you mean the entire Post (my responses included?) Not sure why you would want to delete?
Please clarify for me ...
Regards
Steve
-
MPN-MATE Admin
- Site Admin
- Posts: 633
- Joined: Mon Apr 22, 2019 11:38 pm
Re: Please delete this post.
Craig,
I was very glad to learn that you've managed a longer chat with Warwick, as his counsel would be invaluable to you I am certain...
Yes, you are correct, in that many of us might share similar bio-markers and yet have completely different experiences too...
Happy to chat with you also should you wish to give me a call to discuss anytime...
However, it's important to remember that I am the person who decided what was best for me, when deciding NOT to go down the path of having an ASCT procedure, and not my doctor's. Learning how to 'self-advocate' also became quite the epiphany...
To explain further if I may...
When first diagnosed (Dx) in 2016, I had been studying at university for c. 6.5 years, when informed that a position I had applied for was accepted, and I would be flying out to SE Asia on the following Tuesday. That fateful Friday as life would have it, saw me delivering my immobile 80yo mother to her medical centre, and all that was required for me to do was a standard medical before setting off to my new assignment. However, late the following Sunday night I received a call from the Chief Medical officer of the DFAT program, advising me of some abnormalities in my Blood-work and that those tests would first need repeating...
This turned out to be Stage 1 of learning to live with an MPN Dx.
My immediate reaction was that a gross mistake must've been made somewhere, and repeating the Tests asap should resolve the issue... Unfortunately, no matter how much time I took trying to find another reason for those Blood-work abnormalities, every turn I made proved only to confirm the Positive Dx.
Finally, I had to come to accept my Dx, of course that acceptance came with a great deal of remorse... Because it meant that my newly won position, was no longer available to me. Deep depression set in, first I was started on treatment w/ HU. However, I was suffering with extreme mental fugge & internal bleeding of the Portal vein and my gums would periodical bleed too... Eventually I was placed on one of the earlier versions of Interferon, however, that just seemed to accentuate my depression even further... A BMB was ordered along w/ a gene sequencing panel. The BMB results showed severe Fibrosis Level 2. My Driver mutation was CALR Type 2, I also have ASXL1 (high risk mutation), & Von Willebrands Syndrome (VWS). Shortly thereafter I was reclassified as Post ET / MF and Intermediate 2. I started Tissue Type (TTs) tests and learned that my siblings were not a 10/10 match and a donor was being sought from the bone marrow registry. While awaiting those results I also commenced taking 25mg b/d Ruxolitinib. Almost instantaneously the mental fog subsided and my slightly enlarged spleen returned to normal size. However, my fatigue levels also increased due to the Ruxolitinib suppressing my immune system, and that was hard to deal with in the beginning...
After c. 12 months I'd reduced my Rux' to 20mg b/d, and I was feeling more able to manage my illness... I decided to turn my research skills to learning about MPNs and dove in deeply to glean all possible information concerning my MPN condition. The very first and often overlooked thing I learned was that MPNs are essentially long-term chronic conditions, and while some people do progress rapidly, the greater majority tend to learn how to best manage their condition & live with them...
Shortly thereafter, I commenced my "Anti-Inflammatory" diet and started exercising with cycling (intense aerobics) and doing longer distance rides. Although it seems a contradiction, the greater I'd exercise, the stronger would become my energy reserves. However, the extreme fatigue never quite goes away, one simply learns to push through those times when feels impossible to even get out of bed...
My 2nd BMB, showed a marked improvement and somewhat miraculously my Fibrosis had reduced to Level1. Astounding I thought and I must be doing something right...
While I still have a fairly heavy symptom burden, I can better manage my illness with diet and exercise, however, it's not easy to always do so... and it takes a concerted effort to remain consistent. Nevertheless, I wasn't out of the woods so to speak, as my VWS (contributed to my having a few Transient Ischemic Attacks - TIAs).
Ultimately, each of us must make our own decision in this regard, and whatever the decision, it is extremely important to have a medical team that one is able to communicate and feel absolutely comfortable with... Because MPNs are indeed 'Chronic Illnesses' and I will likely have this condition for the rest of my life, however short or long that might prove to be... Personally, thus far, I only know of one person in eight years, who ever has had a completely successful ASCT procedure...
https://www.mpn-mate.com/mpn-doctor-relationships/
Warwick's position is that he is still here with us, which indeed may not have happened w/out the ASCT. However, Warwick still has much to contend with... and that is why I keep suggesting to you that Warwick is the best person to chat with concerning ASCT procedures etc...
Hope something here helps Craig...
Very best wishes
Steve
PS. Here's a Link to some further very useful MPN information Craig:
https://www.cancer.org.au/assets/pdf/my ... -neoplasms
I was very glad to learn that you've managed a longer chat with Warwick, as his counsel would be invaluable to you I am certain...
Yes, you are correct, in that many of us might share similar bio-markers and yet have completely different experiences too...
Happy to chat with you also should you wish to give me a call to discuss anytime...
However, it's important to remember that I am the person who decided what was best for me, when deciding NOT to go down the path of having an ASCT procedure, and not my doctor's. Learning how to 'self-advocate' also became quite the epiphany...
To explain further if I may...
When first diagnosed (Dx) in 2016, I had been studying at university for c. 6.5 years, when informed that a position I had applied for was accepted, and I would be flying out to SE Asia on the following Tuesday. That fateful Friday as life would have it, saw me delivering my immobile 80yo mother to her medical centre, and all that was required for me to do was a standard medical before setting off to my new assignment. However, late the following Sunday night I received a call from the Chief Medical officer of the DFAT program, advising me of some abnormalities in my Blood-work and that those tests would first need repeating...
This turned out to be Stage 1 of learning to live with an MPN Dx.
My immediate reaction was that a gross mistake must've been made somewhere, and repeating the Tests asap should resolve the issue... Unfortunately, no matter how much time I took trying to find another reason for those Blood-work abnormalities, every turn I made proved only to confirm the Positive Dx.
Finally, I had to come to accept my Dx, of course that acceptance came with a great deal of remorse... Because it meant that my newly won position, was no longer available to me. Deep depression set in, first I was started on treatment w/ HU. However, I was suffering with extreme mental fugge & internal bleeding of the Portal vein and my gums would periodical bleed too... Eventually I was placed on one of the earlier versions of Interferon, however, that just seemed to accentuate my depression even further... A BMB was ordered along w/ a gene sequencing panel. The BMB results showed severe Fibrosis Level 2. My Driver mutation was CALR Type 2, I also have ASXL1 (high risk mutation), & Von Willebrands Syndrome (VWS). Shortly thereafter I was reclassified as Post ET / MF and Intermediate 2. I started Tissue Type (TTs) tests and learned that my siblings were not a 10/10 match and a donor was being sought from the bone marrow registry. While awaiting those results I also commenced taking 25mg b/d Ruxolitinib. Almost instantaneously the mental fog subsided and my slightly enlarged spleen returned to normal size. However, my fatigue levels also increased due to the Ruxolitinib suppressing my immune system, and that was hard to deal with in the beginning...
After c. 12 months I'd reduced my Rux' to 20mg b/d, and I was feeling more able to manage my illness... I decided to turn my research skills to learning about MPNs and dove in deeply to glean all possible information concerning my MPN condition. The very first and often overlooked thing I learned was that MPNs are essentially long-term chronic conditions, and while some people do progress rapidly, the greater majority tend to learn how to best manage their condition & live with them...
Shortly thereafter, I commenced my "Anti-Inflammatory" diet and started exercising with cycling (intense aerobics) and doing longer distance rides. Although it seems a contradiction, the greater I'd exercise, the stronger would become my energy reserves. However, the extreme fatigue never quite goes away, one simply learns to push through those times when feels impossible to even get out of bed...
My 2nd BMB, showed a marked improvement and somewhat miraculously my Fibrosis had reduced to Level1. Astounding I thought and I must be doing something right...
While I still have a fairly heavy symptom burden, I can better manage my illness with diet and exercise, however, it's not easy to always do so... and it takes a concerted effort to remain consistent. Nevertheless, I wasn't out of the woods so to speak, as my VWS (contributed to my having a few Transient Ischemic Attacks - TIAs).
However, continuing my own research led me to understand, that my choices were to either accept the "Quality of Life" I'd found in managing my illness, or taking the mostly unknown path of the ASCT, and all that might eventuate with the many possible unknown ramifications & outcomes... and I chose the former.My first, I later learned occurred in 2015, and was roughly round the same time I decided to cease my studying, as I'd lost the ability to truly stay focussed etc. That experience was unlike anything I'd ever heretofore felt... I was essentially locked inside my body, but no longer able to control any of its functions, I was reduced to a mere spectator of sorts... Both fascinating and fear absorbing experience all at once...
Ultimately, each of us must make our own decision in this regard, and whatever the decision, it is extremely important to have a medical team that one is able to communicate and feel absolutely comfortable with... Because MPNs are indeed 'Chronic Illnesses' and I will likely have this condition for the rest of my life, however short or long that might prove to be... Personally, thus far, I only know of one person in eight years, who ever has had a completely successful ASCT procedure...
https://www.mpn-mate.com/mpn-doctor-relationships/
Warwick's position is that he is still here with us, which indeed may not have happened w/out the ASCT. However, Warwick still has much to contend with... and that is why I keep suggesting to you that Warwick is the best person to chat with concerning ASCT procedures etc...
Hope something here helps Craig...
Very best wishes
Steve
PS. Here's a Link to some further very useful MPN information Craig:
https://www.cancer.org.au/assets/pdf/my ... -neoplasms