man joetz, good luck man, we are praying for you!
I’ll be pretty shocked if you have a full head of hair as they claim. There is no evidence at all that I can find that just injecting stem cells into your scalp will regrow a full head of hair. If they are making those sorts of claims I’d be a bit nervous.
Yes, I’ve heard lipo is aweful. Will be interested to hear if PFS symptoms improve. Not sure if you had shrinkage or muscle waste? If so please note any changes.
That’s great that everything went well mate. Aside from the obvious that we are all hoping for, I too am interested to know if this will regrow hair, I mean hey that’s the reason why all of us got to this forum in the first place right.
It would be good if you can take some before and after pics to compare any changes up there, and of your whole body in general. It might give you better skin and things like that too, all of which I’m sure people would be interested in.
Will these adipose derived stem cells make their way into the brain?
How many months does it take for things to improve with this therapy?
Yes, the cells will make it to the brain and should repair any brain damage. The blood stream will take the stem cells everywhere so no organ will be untouched.
I’ve been told that things really go into high gear in month two. That’s when I’ll probably see most of the changes if this thing works for me so I guess its going to be a long journey
Today I had another morning boner so that’s a good sign. Nothing else to report though, good or bad
So, this entire procedure was done in just one day? 80 million cells sounds like alot but when you consider the body is made up of anywhere from 10-100 trillion cells that’s not alot.
We support you all here.
It may be our salvation.
Hey Joetz,
Sorry if I missed it somewhere… When was the last time you woke with morning boners before this stem cell surgery?
…and I hope this works out for you, man!
There were occasions where I did have morning boners even prior to the procedure, so I don’t think it’s a good criteria. We’re all going to need to wait and see
There is one thing that is astonishing about this: the healing of my body seems to be accelerated. That lipo was just horrid, but the healing has been almost mutant-like. I am actually back at work and able to do my job on this Monday after being lipoed on Friday. Also the bruising on my scalp is healed too. Very interesting
But nothing to report yet on the libido front. Still totally dead. It may be as much as two months before I see a change
Glad to hear you’re feeling better. Do they hazard a guess as to how long before you are completely out of the woods when it comes to the possibility of developing tumors?
If the stem cells are mobilized everywhere, why did they inject you in the scalp? Also, wouldn’t they have been better spent on injecting near the genital area instead?
It’d be great if we could get some information on the research in Italy so doctors who are using stem cells can maybe get a better idea how to treat us. There are variations to the procedure and also sometimes they inject other molecules with them as well. So far all we have is something has been found at the androgen receptor level. Also there is something wrong with our neurosteroids, but yet the problem is not neurological in nature? This doesn’t make sense to me. I don’t get why we are not allowed to know more about what has happened.
If our problem has to do with epigenetics, does anyone know (someone with science background) if the stem cells would possibly replace the cells that have gene expression silenced? And either way, wouldn’t the silenced cells be weakened or atrophied or something like that? Could the stem cells go in and either influence proper gene expression, or replace the effected cells? I would imagine the shrinkage and dead feeling people experienced is related to damaged cells in a certain way.
Thanks for going ahead and doing this for us Joetz, and thanks for keeping us updated, we all appreciate it.
By the example of the study at Hebrew U they had to add something in a very controlled environment in a lab to a culture of stem cells to change the expression of the particular gene they were targeting. It seems it isn’t as simple as injecting stem cells and getting a change in gene expression. What concerns me a bit more is they told him they were going to grow his hair back by injecting stem cells into his scalp. If it were that simple there would be an entire industry just based on that procedure alone due to the demand for hair loss treatment. The largest animal to regrow a limb via stem cells, the newt, has a certain protein which somehow tells stem cells where to go and what tissue to become. Maybe we are missign a step or two or three. There is something to this in theory because for one every major research institution seems to some level of stem cell research going on.
Right. I was wondering about the stem cells in the scalp thing. Thats why I’m looking more at universities for stem cell therapy, they will be much more legitimate. If our problem is epigenetic its going to be extremely difficult to correct, and stem cells may not be the best way to do it in the end. If its a matter of damaged brain, or prostate, or nerves, then it should work.
First of all, Joetz, you are such a brave man for trying this out and i’ve only got admiration for you. It’s refreshing too see someone really taking the bull by the horns with all this, especially when you are doing it with so much of you hard earned cash. You are obviously doing this first and foremost for yourself but you are also doing everyone else here a huge favour by trailblazing this one. I was just about to start researching stem cell treatments for my brain injured father, but never thought about it for us until i read your thread. Definitely the most exciting thread on the board so best of luck, hopefully it will be the silver bullet!
As much respect as i have for Awor for coming up with his theories and experiments, even if all the pieces of the jigsaw were to fall in to place and we had a perfect understanding of our problem, is a treatment going to be possible and if so how long will it take? Humanity seems to have a pretty good understanding of most illnesses, the hardest part seems to be treating some of them. 2 years of this crap and i’m already utterly fed up with it, it’s killing my soul. Losing these years in your youth is a definitely a sore one to take, i couldn’t really care less if they shave them off at the end of my timeline. Saying that, i’m not sure if i would ever have been the first to try this out.
Whether we understand our problem or not, surely there is always going to be a trial and error approach to our problem anyway - and there is always going to be a risk involved when we try something. But that is the same for any drug we try or even in any aspect of our daily lives to an extent. Obviously we should try and minimise those risks where possible but my view is that our young live’s are too short not to take risks to get us out of this awful mess. And who is going to take part in any possible drug treatment trials in the future from Awor’s studies - some of us are going to have put ourselves forward first? We are just in the shit situation of having to be our own guinea pigs in order to get ourselves better. And we might just be given the choice of stem cell treatment at the end of it all as our best chance of getting permanently better. It seems to be the one stop shop for everything, even baldness like you mentioned Joetz (en.wikipedia.org/wiki/Stem_cell_treatments).
Treatments aside, my big worry is that we have put in motion some heightened exposure to tumours or cancer anyway by just acquiring PFS. Specifically i worry about testicular and prostate cancer due to the nature of our illness and how finasteride works. if we think of cancer as starting with genetic modifications and proposing that PFS has started along the same lines through epigentic changes or whatever, it is worrisome. But that is a very depressing thought, and all the more reason to be positive about the steps Joetz has taken try and correct what has gone wrong with us.
Joetz, please find out why they didn’t wait a week before inserting the stem cells into you as was originally planned.
I thought tumors were only a risk with embryonic stem cells. These are my own cells made from my own fat. Anyway even if there is a risk I’ll take it. Pardon my french, but I have had enough of this PFS bullshit
The stuff injected in my scalp was made from some blood that was pulled out of my arm at the start of the procedure. One of the doctors said he was going to discard it because it was “extra” but if I wanted to he could inject it in my scalp. To be honest it never occurred to me to inject it in my genitals. That thought never even crossed my mind and I’m not even sure that’s a viable option. I’m not really too keen on the idea of injecting anything there anyway.
Regarding the scalp and the effectiveness of it growing hair, it’s really up to you guys if you want to believe it or be skeptical. The doc didn’t have photos on him, the pictures are on his laptop in his car and I didn’t feel like making him get his laptop to show me even though he probably would have if I asked him. Hair loss isn’t really super important to me and I only did it because they offered and I didn’t have anything to lose.
as for epigenetics, I have no idea how epigenetics relates to this or how stem cells could make a difference. To me the epigenetics theory always sounded like a crock to me but what do I know? I’m not sure how epigenetics became legit on this forum and everything else became quackery, but anyone who wants to pursue epigenetics theories can do so and I’ll be out there trying everything else and doing everything to kill PFS before it kills me
Joetz,
From initial googling, that was my understanding as well.
For embryonic stem cells, tumours appear to have developed as a result of this, see news.bbc.co.uk/1/hi/7894486.stm
Also this page talks about the possibility of a relationship between ordinary stem cells and cancer stem cells, but they are just hypothesising and i think it is just talking about stem cells and cancer in general not stem cell treatments: stemcells.nih.gov/info/Regenerative_Medicine/2006chapter9.htm
This page seems quite good and gives a good commentary on Stem Cells and the general predicament we find ourselves trying to cure PFS, as well as risk (closerlookatstemcells.org/Top_10_Stem_Cell_Treatment_Facts.htm). In section 2, it talks about the need to use the right stem cells to treat each target condition and also highlights the likelihood of embryonic stem cells causing tumours.
In the UK, i’ve noticed stem cell treatments have been making front page news a few times. Like i indicated before, adipose derived stem cells from stomach fat was highlighted as a possible treatment for brain-injured victim’s. I don’t know if all stem cells needed for treatment are taken from stomach fat, and then the correct cells are cultured.
As far as the American FDA approving stem cell treatments, there appears only a few at the moment. But they are giving the go ahead for trials left, right and centre. If there are going to be trials for PFS, the test subjects can only come from our PFS community, people like me and you anyway. I’m not sure if there are any rats with PFS.
And i agree with your comment Joetz, about the need to question the wisdom of medical regulators such as the FDA, when they have approved things like finasteride for hair loss. The number of mistakes made and misinformation given from the UK medical community in relation to my own and my father’s health, hardly fills me with confidence. It all feels like a lottery to me now, and we may be no better or worse off depending on what risks we take.
In summary, i suppose it comes back to how much we feel we have to lose vs. how much we have to gain? Is there a likelihood that by waiting, chances of success will increase and exposure to risk will fall? Personally, i would want to have as much confidence as is possible in the people doing the operation and have a more thorough read through all the literature etc. I would have waited to here on Awor’s studies as well and i want to investigate SERM’s more.
But the chances are i would have been following your lead on this Joetz as our situation is fairly desperate, we don’t have much to lose and we can’t realistically be expected to wait for advancements in science or for things like stem cell treatments to be perfected. I’m looking for a fairly quick return to full health as well or else i don’t see the point. Waiting to get cured in 10/20 years time where i will be hitting the age where male’s are in sexual decline and start acquiring serious illness anyway, is of little use to me. And up to that point i can only see it being a fairly pathetic and probably lonely existence. It’s heart breaking watching your mates get married, have kids, moving to exciting countries to start work, even going out at night carries little meaning for me now…instead we sit around laptops clinging to hope for the answer to this ridiculous situation. We’re all going to end up mad with it all.
Just for your info Joetz, there is ‘advice for consumers’ from the FDA and they do say:
“There is a potential safety risk when you put cells in an area where they are not performing the same biological function as they were when in their original location in the body,” says Simek. Cells in a different environment may multiply, form tumors, or may leave the site you put them in and migrate somewhere else." (fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm)
Doesn’t go into too much detail and doesn’t say anything about quantifying the risk so i don’t know how much attention i would pay to this. From what i have read on the net, it is almost overwhelming how positive the outlook is in terms of what stem cell treatment’s could do for almost any illness you care to think of. I would have confidence in what you have done.
I asked them why and they said “because you can handle it”.
Apparently most of the patients they get are very old people with advanced Alzheimer’s and they are less comfortable giving them the 80 million cell hit. The dude I know who had this done told me there were a lot of concerns because he had very thick blood and was immediately put on aspirin. He had to come back for a second dose. I guess this stuff is done on a case by case basis?
As you might know already they are using stem cell transplant for breast reconstruction surgery and they do that usually on the same day as the mastectomy.