8 ms·

Five years ago, I had my own immune system rebooted to (so far) eliminate my Stage IV melanoma cancer in a trial at the National Institutes of Health. At that t

Five years ago, I had my own immune system rebooted to (so far) eliminate my Stage IV melanoma cancer in a trial at the National Institutes of Health. At that time, without further treatment, I probably had six to twelve months to live. In essence, the tumor infiltrating lymphocytes (TIL) adoptive cell therapy was as follows: 1. The doctors removed a melanoma tumor that was growing in my neck. 2. In the lab, white blood T cells (T lymphocytes) that were attempting to attack the cancerous tissue in my tumor were isolated into at least five different petri dishes. The white blood cells' growth was stimulated using IL-2. 3. Those samples that grew the most and attacked the cancerous tissue (2 of the samples, in my case) were then expanded to a total of 130 billion lymphocytes in the lab. 4. I returned to NIH for a week of immune system preparation, specifically the almost complete suppression of my own active immune system using harsh chemotherapy. This was to allow my body to accept the new lab-grown immune system. 5. Once my immune system was sufficiently suppressed, I received all 130 billions of the lab-grown lymphocytes. The immune system was then stimulated by having five large doses of IL-2 every eight hours over a two day period. (Note: This was hellish.) 6. After a week or so, my immune system had recovered and I was released from the NIH Clinical Center to return home. I was given an anti-biotic to take for 4 to 6 months to reduce the possibility of contracting a specific pneumonia (PCP). 7. I returned to NIH monthly for scans monthly for the first three months. After month one, my tumors had shrunk 33%. After month two, 66%. After month three, they were almost complete gone. My immune systems had essentially been immunized against some of the mutations contained in my cancerous melanoma cells. 8. I was declared NED (no evidence of disease after 15 months) and a complete responder to the treatment after 21 months. Now, almost five years post-treatment, I have had CT scans and brain MRIs every six months with still no signs of melanoma. My doctors have told me that I'm likely cured. Immunotherapy works. I chose this trial because the I liked the fact that my own immune system was being boosted to fight my cancer. Further info: https://en.wikipedia.org/wiki/Tumor-infiltrating_lymphocytes https://en.wikipedia.org/wiki/Tumor-infiltrating_lymphocytes My doctor is Dr. Steven Rosenberg of the National Cancer Institute.

byteCoder 9y ago
Also, besides the overall success of my treatment, other than regular followup scans, I don't require any further medications of any sort. It's a one-and-done treatment. I'm certain that Big Pharma doesn't like these treatments.
- epistasis 9y ago
  Congratulations on a successful treatment! It is so wonderful to hear stories like these. Immuno-oncology is bringing great hope to mutation-rich cancers like melanoma. >I'm certain that Big Pharma doesn't like these treatments. You would be certainly wrong on that part. Immuno-oncology has been "Big Pharma's" major focus for the past 5-10 years, inspired in no small part by the work of Rosenburg and many others. One of the most recent approvals discussed on HN was for a CAR T-cell targeted against CD19. Big Pharma would also be very happy to sell immune checkpoint inhibitors for use in combination therapy with adoptive cell transfer.
  - byteCoder 9y ago
    I hope that I'm wrong. Many more patients can possibly be saved with more widespread use of this treatment. Of course, the FDA needs to modernize their own approval processes to deal with such personalized treatments. It's my understanding that my lab-expanded lymphocytes needed to be individually approved by the FDA. I do know that my specific trial at NIH was sponsored by Lion Biotechnologies as part of that company acquiring a license to reproduce the laboratory processing for the TIL ACT.
  - jfarlow 9y ago
    Yep. Novartis' new CAR was recommended for approval last week. ~100 are in the FDA pipeline, and now that the first was unanimously approved, expect a lot more. Paywalled, but a good review of the 100 in trials right now: https://www.ncbi.nlm.nih.gov/pubmed/27613725 https://www.ncbi.nlm.nih.gov/pubmed/27613725
- WalterBright 9y ago
  The people who run Big Pharma sometimes get cancer themselves, too, as well as their loved ones. It's not like there's a shortage of maladies people would be willing to pay a lot for treatments for.
- jghn 9y ago
  This is a common thought but overblown. True cures would also bring enormous profits.
QAPereo 9y ago
Re: The IL-2 infusions being hellish, I can guess why that would be (pain, fever, delirium, and so on), but I'd be interested in a first-hand account from someone like you, who seems to be so able to communicate these experiences. In short, what was the hellish part of it?
- byteCoder 9y ago
  You've listed the main side effects of the treatment: pain, fever, and delirium. About 20-30 minutes after receiving a dose of IL-2 by infusion, my body would undergo violent bed-shaking rigors for 10-20 minutes. I had the worst chills I've ever had, followed by breaking out in a hot sweat when it had passed. This was very unpleasant. After each successive dose, the effects would worsen. Essentially, the doctors were trying to take my body to the brink of experiencing a cytokine storm (https://en.wikipedia.org/wiki/Cytokine_storm https://en.wikipedia.org/wiki/Cytokine_storm) to jump-start my immune system. This was a pretty miserable part of the treatment, but (in the end) obviously worth it.
  - QAPereo 9y ago
    Wow, that's absolutely incredible, thanks for the answer, and let me say how glad I am that you're still around to offer it.
  - Waterluvian 9y ago
    These things you're describing sounds scary. Was there significant risk with this treatment?
    - byteCoder 9y ago
      The research doctors at NIH have been refining treatments with IL-2 for almost two decades for thousands of patients. They've gotten enough experience to recognize and mitigate the issues that may develop. In my specific case, they weee concerned that I might have a heart issue that was unknown (I don't). For the sake of my own safety, I was given the treatment in ICU. For most patients, this is unneeded. Actually, my biggest risk was contracting a superbug with my severely weakened immune system. The last NIH patient who died from the superbug was a few rooms away in ICU at the NIH Clinical Center at the same time as me. (I knew the doctors were taking extra precautions with me, but I was totally unaware of was what happening down the hall from me.) https://www.google.com/amp/www.nbcnews.com/health/health-news/amp/teen-saved-transplant-killed-superbug-nih-hospital-n225496 https://www.google.com/amp/www.nbcnews.com/health/health-new...
elorant 9y ago
If I'm not too indiscreet, mind if I ask how much did the whole treatment cost?
- byteCoder 9y ago
  Since this was conducted under a research trial by the US government, the treatment did not cost me (or my health insurance) a penny. I am told that the treatment and follow-ups cost the research program budget at least a million dollars per patient.
  - slantedview 9y ago
    An important example of the government's role in medicine.
    - byteCoder 9y ago
      Absolutely agreed.
    - wyager 9y ago
      Many research trials are privately funded, but run by the government for regulatory reasons. I don't know about this one.
  - credit_guy 9y ago
    This is a mind blowing amount. What could be the reason for such a high cost?
    - wyager 9y ago
      Cutting edge scientific research is expensive. I don't know why people expect advanced medicine to be cheap. Synthesizing or extracting complex proteins, using rare medical radioisotopes, medical scanners based on the most cutting edge engineering and physics... Almost no endeavor besides physics and medicine makes regular use of superconductors, antimatter (for PET scans), etc.
ABCLAW 9y ago
When I used to work in a lab, these types of reports were common and delightful to hear, but very few patients were as well informed and granular with their understanding as you are. Congratulations on your recovery!
PeCaN 9y ago
Woah. That is seriously cool, that we can do that. Congratulations on your recovery, and thanks for going through that for science. Can you maybe elaborate a little on how they selected the cells to lab-grow? Step 2 and 3, in particular. By what criteria did they divide them between petri dishes and how did they test how efficient they were at destroying cancer cells? (Did they feed them parts of your tumor or something?)
- byteCoder 9y ago
  I don't know all the technical measurements and details, but, yes, the researchers did feed them parts of my tumor.
- jfarlow 9y ago
  Here is a figure that illustrates the process for the CARs in the article (which is slightly different than OPs, but similar in result): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480367/figure/F1/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480367/figure/... Essentially it has 3 parts: - Extraction of tumor to test against. - Extraction of immune cells, to which a genetic therapy is applied that grants them a new tool to home in on the above tumor. - After testing the immune cells against the extracted tumor, reimplant the 'upgraded' immune cells.
kaik 9y ago
This is a fantastic story. I'm so happy to hear that it worked for you!! Thanks for sharing!
lr4444lr 9y ago
This research and your story give me so much hope for people who have inoperable cancers and can't handle chemo. I look forward to the day that we can rank cancer among syphilis, tetanus, and all of the other past disease scourges of man made completely eliminable by a non lifelong treatment.
- e40 9y ago
  and can't handle chemo He said he had chemo to suppress his immune system before he got the new one.
- gozur88 9y ago
  The treatment is pretty brutal. Even when it's available for most cancers there's still lots of room for improvement on the tolerability side.
Mz 9y ago
I chose this trial because the I liked the fact that my own immune system was being boosted to fight my cancer. We need more of this. Congrats on being NED.
hughes 9y ago
That's an incredible story, thanks for sharing.
xxSparkleSxx 9y ago
>I chose this trial because the I liked the fact that my own immune system was being boosted to fight my cancer. I work in biotech and a very successful CEO of mine once told me "When I'm evaluating new (bio)technologies, always bet on tech that replicates/take advantage of a currently working biological system. Tech where everything is synthetic/relies on a custom designed system/etc is much more likely to not work in the long run."
pryelluw 9y ago
I just lost my mother to cancer and it was a hellish experience. It gives me joy to know someone out there beat it and that people in the near future may have a better chance than mom did. Congratulations on the recovery. Wish you many wonderful years full of life!
maxxxxx 9y ago
I am curious. How was the cancer found? Did you have any symptoms? How was the treatment?
- byteCoder 9y ago
  My melanoma was initially an ugly black mole that grew on the side of my face, which I had removed by my dermatologist and sent to pathology for analysis, where it was determined to be a melanoma of intermediate depth. Because of its depth into the skin tissue, I had a wide excision (where more skin tissue is removed) and a sentinel lymph node biopsy which removed four lymph nodes that were most closely connected to the tissue that was removed. Of the four nodes removed, three were negative (clear) and one had a micro metastasis (micromet) sized 0.18mm. This placed me at Stage IIIa. The melanoma developed as tumors in my lung just over a year later, putting me at Stage IV. The primary symptom I had was the mole. I felt completely normal. As far as the treatment, read my answer about the "hellish" nature of it in another reply.
  - hycaria 9y ago
    Thanks for the info. This is one of the most terrifying cancers imo, metastating so fast, and with so few symptoms in the beginning. Congrats on your recovery !
- known 9y ago
  https://en.wikipedia.org/wiki/Fine-needle_aspiration https://en.wikipedia.org/wiki/Fine-needle_aspiration
deleted 9y ago
[deleted]
noam87 9y ago
I might be doing this treatment at some point since I failed Ipi and PD-1. -- What were the long-term side effects for you? -- Have you had neurological/memory problems since? Congrats on the success :)
- byteCoder 9y ago
  My biggest side effect has been vitiligo, the loss of color in my skin. The treatment caused my immune system to attack my melanocytes in addition to my melanoma cells. This is actually a great prognostic indicator. If that's the worst of it, I can handle it, especially considering the alternative.
  - kaybe 9y ago
    Did you have to redo all the vaccinations?
    - byteCoder 9y ago
      Nope. As far as I know, I've retained my immunities. However, I do know that my seasonal allergies have changed slightly since treatment–they've actually moderated. I don't know if that's due to the treatment or just an age-related occurrence.
  - TylerH 9y ago
    I've heard that vitiligo is almost entirely reversible without surgery, so you might not even have to live with it if you don't want to.
fgimenez 9y ago
Incredible. Also, getting treated by Steve Rosenberg is so awesome. Your results are literally the reason he'll get the Nobel prize within 10 years.
b3lvedere 9y ago
This is so awesome on so many levels. Congratulations byteCoder! I've had to witness my brother in law dying because of cancer. It's horrible.
shishy 9y ago
I used to work at the National Cancer Institute (tumor immunology research in liver cancer). I've met Dr. Rosenberg a number of times -- everyone there wonders if he'll get a Nobel Prize for his discovery of IL-2. It's really cool to see the patient's side of the journey though - and I'm very glad things turned out well for you. Thanks for sharing :).
zubspace 9y ago
Fascinating story. Thank you for sharing. Small question: How do you get into a trial like this? Did someone choose you? Are trials like this announced somewhere and you did apply? Word-of-mouth? Someone related who works in this field? It's hard to imagine how it feels to be diagnosed with cancer but I guess in many cases, if the outlook looks dim, a trial like this would make the most sense? Or not?
- yread 9y ago
  Getting into a trial usually involves a lot of criteria that the patient has to fulfill (age, subtype and stage of the disease, results of various tests, all kinds of other treatments not working, mutations or lack of them, good performance status, good organ function). If the patient fulfills them their doctor just asks them.
whoami_nr 9y ago
Won't the cancer cells mutate again after it figures out that the immune system is working successfully against it ? If they won't mutate why can't the body choose the white blood cells which are effective against it and amplify them ? Why does it have to be done externally in a lab ? If they do mutate again, what makes this treatment effective ? Excuse me for the basic questions,I have no experience in Biology or how antibiotics work.
- dm319 9y ago
  No, those are excellent questions. Our immune system is a force to be reckoned with for any cancers - we don't have figures on how many cancers our immune system clears before it meets one it cannot clear. So for cancer to survive, it has to thwart our immune system somehow, and one of the ways it does this is to use signalling pathways which dampen down the immune response. It communicates to the cancer 'calm down, don't call your friends'. The immune cells don't go away - instead they switch to a mode where they control rather than clear the cancer. Adoptive TIL therapy (which is not the same thing as the article is talking about, though they are both T cells) takes the immune cells from the cancer. These cells recognise the cancer as being foreign ('non-self') and in need of clearing, but they have been suppressed by signals from the cancer. In the lab the cells are selected and bred so that you have a pool of hyped-up cytotoxic T cells, which when transfused back into the patient are so aggressive even the suppressive signals from the cancer don't stop the killing. In fact, it's the mutations in the cancer which allow this therapy to work. Mutations are what makes the cancer 'non-self' - the more they have, the more attention they get from the immune system. If they try to hide their mutations (all cells must present the products of their DNA on the cell surface), they get removed by natural killer cells (so called because they naturally kill cells unless they display what they are meant to on the cell surface). The article actually talks about another type of treatment called CAR-T cell therapy. This is a bit different. What you do in this case is you take a T cell from the patient (not a tumour-infiltrating T cell - instead you want an effective T-killer cell), and they graft an antibody which is specific* for the tumour onto the cell. There are a few other steps to make sure that the cell survives in the patient, but essentially when you infuse this cell (ok they give more than one) into the patient, it recognises the target (hopefully the tumour), divides and kills, divides and kills etc etc until the tumour is gone. Then hopefully it stops dividing, or you end up with a T cell tumour. In this case - your question is right on target. The cancer can and does mutate to avoid this therapy. In this particular case the antibody is for CD19/CD20 (I can't remember), and it was able to clear the tumour before it could evolve to drop CD19/20 from the cell surface. In other patients subsequently treated, a proportion of them have relapse with tumour cells not displaying CD19 on the surface. In fact, this is the achille's heal of CAR-T cell treatment. It is essentially a very powerful antibody, but for it to work it needs a few things - 1. The tumour must have the target marker on all of its cells - i.e. it can't evolve out, 2. You must be happy to lose any healthy cells which also have this marker. In this case the patient lost all of his B cells. This is a powerful component of the immune system, but actually, you can get away without it, thankfully. This treatment wouldn't work for a T cell leukaemia/lymphoma. Removing all of your T cells gives you AIDS, which is no better than having a terminal cancer (when it's not caused by HIV, that is).

byteCoder 9y ago

Also, besides the overall success of my treatment, other than regular followup scans, I don't require any further medications of any sort. It's a one-and-done treatment. I'm certain that Big Pharma doesn't like these treatments.

epistasis 9y ago
Congratulations on a successful treatment! It is so wonderful to hear stories like these. Immuno-oncology is bringing great hope to mutation-rich cancers like melanoma. >I'm certain that Big Pharma doesn't like these treatments. You would be certainly wrong on that part. Immuno-oncology has been "Big Pharma's" major focus for the past 5-10 years, inspired in no small part by the work of Rosenburg and many others. One of the most recent approvals discussed on HN was for a CAR T-cell targeted against CD19. Big Pharma would also be very happy to sell immune checkpoint inhibitors for use in combination therapy with adoptive cell transfer.
- byteCoder 9y ago
  I hope that I'm wrong. Many more patients can possibly be saved with more widespread use of this treatment. Of course, the FDA needs to modernize their own approval processes to deal with such personalized treatments. It's my understanding that my lab-expanded lymphocytes needed to be individually approved by the FDA. I do know that my specific trial at NIH was sponsored by Lion Biotechnologies as part of that company acquiring a license to reproduce the laboratory processing for the TIL ACT.
- jfarlow 9y ago
  Yep. Novartis' new CAR was recommended for approval last week. ~100 are in the FDA pipeline, and now that the first was unanimously approved, expect a lot more. Paywalled, but a good review of the 100 in trials right now: https://www.ncbi.nlm.nih.gov/pubmed/27613725 https://www.ncbi.nlm.nih.gov/pubmed/27613725
WalterBright 9y ago
The people who run Big Pharma sometimes get cancer themselves, too, as well as their loved ones. It's not like there's a shortage of maladies people would be willing to pay a lot for treatments for.
jghn 9y ago
This is a common thought but overblown. True cures would also bring enormous profits.

QAPereo 9y ago

Re: The IL-2 infusions being hellish, I can guess why that would be (pain, fever, delirium, and so on), but I'd be interested in a first-hand account from someone like you, who seems to be so able to communicate these experiences. In short, what was the hellish part of it?

byteCoder 9y ago
You've listed the main side effects of the treatment: pain, fever, and delirium. About 20-30 minutes after receiving a dose of IL-2 by infusion, my body would undergo violent bed-shaking rigors for 10-20 minutes. I had the worst chills I've ever had, followed by breaking out in a hot sweat when it had passed. This was very unpleasant. After each successive dose, the effects would worsen. Essentially, the doctors were trying to take my body to the brink of experiencing a cytokine storm (https://en.wikipedia.org/wiki/Cytokine_storm https://en.wikipedia.org/wiki/Cytokine_storm) to jump-start my immune system. This was a pretty miserable part of the treatment, but (in the end) obviously worth it.
- QAPereo 9y ago
  Wow, that's absolutely incredible, thanks for the answer, and let me say how glad I am that you're still around to offer it.
- Waterluvian 9y ago
  These things you're describing sounds scary. Was there significant risk with this treatment?
  - byteCoder 9y ago
    The research doctors at NIH have been refining treatments with IL-2 for almost two decades for thousands of patients. They've gotten enough experience to recognize and mitigate the issues that may develop. In my specific case, they weee concerned that I might have a heart issue that was unknown (I don't). For the sake of my own safety, I was given the treatment in ICU. For most patients, this is unneeded. Actually, my biggest risk was contracting a superbug with my severely weakened immune system. The last NIH patient who died from the superbug was a few rooms away in ICU at the NIH Clinical Center at the same time as me. (I knew the doctors were taking extra precautions with me, but I was totally unaware of was what happening down the hall from me.) https://www.google.com/amp/www.nbcnews.com/health/health-news/amp/teen-saved-transplant-killed-superbug-nih-hospital-n225496 https://www.google.com/amp/www.nbcnews.com/health/health-new...

elorant 9y ago

If I'm not too indiscreet, mind if I ask how much did the whole treatment cost?

byteCoder 9y ago
Since this was conducted under a research trial by the US government, the treatment did not cost me (or my health insurance) a penny. I am told that the treatment and follow-ups cost the research program budget at least a million dollars per patient.
- slantedview 9y ago
  An important example of the government's role in medicine.
  - byteCoder 9y ago
    Absolutely agreed.
  - wyager 9y ago
    Many research trials are privately funded, but run by the government for regulatory reasons. I don't know about this one.
- credit_guy 9y ago
  This is a mind blowing amount. What could be the reason for such a high cost?
  - wyager 9y ago
    Cutting edge scientific research is expensive. I don't know why people expect advanced medicine to be cheap. Synthesizing or extracting complex proteins, using rare medical radioisotopes, medical scanners based on the most cutting edge engineering and physics... Almost no endeavor besides physics and medicine makes regular use of superconductors, antimatter (for PET scans), etc.

ABCLAW 9y ago

When I used to work in a lab, these types of reports were common and delightful to hear, but very few patients were as well informed and granular with their understanding as you are. Congratulations on your recovery!

PeCaN 9y ago

Woah. That is seriously cool, that we can do that. Congratulations on your recovery, and thanks for going through that for science. Can you maybe elaborate a little on how they selected the cells to lab-grow? Step 2 and 3, in particular. By what criteria did they divide them between petri dishes and how did they test how efficient they were at destroying cancer cells? (Did they feed them parts of your tumor or something?)

byteCoder 9y ago
I don't know all the technical measurements and details, but, yes, the researchers did feed them parts of my tumor.
jfarlow 9y ago
Here is a figure that illustrates the process for the CARs in the article (which is slightly different than OPs, but similar in result): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480367/figure/F1/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480367/figure/... Essentially it has 3 parts: - Extraction of tumor to test against. - Extraction of immune cells, to which a genetic therapy is applied that grants them a new tool to home in on the above tumor. - After testing the immune cells against the extracted tumor, reimplant the 'upgraded' immune cells.

kaik 9y ago

This is a fantastic story. I'm so happy to hear that it worked for you!! Thanks for sharing!

lr4444lr 9y ago

This research and your story give me so much hope for people who have inoperable cancers and can't handle chemo. I look forward to the day that we can rank cancer among syphilis, tetanus, and all of the other past disease scourges of man made completely eliminable by a non lifelong treatment.

e40 9y ago
and can't handle chemo He said he had chemo to suppress his immune system before he got the new one.
gozur88 9y ago
The treatment is pretty brutal. Even when it's available for most cancers there's still lots of room for improvement on the tolerability side.

Mz 9y ago

I chose this trial because the I liked the fact that my own immune system was being boosted to fight my cancer. We need more of this. Congrats on being NED.

hughes 9y ago

That's an incredible story, thanks for sharing.

xxSparkleSxx 9y ago

>I chose this trial because the I liked the fact that my own immune system was being boosted to fight my cancer. I work in biotech and a very successful CEO of mine once told me "When I'm evaluating new (bio)technologies, always bet on tech that replicates/take advantage of a currently working biological system. Tech where everything is synthetic/relies on a custom designed system/etc is much more likely to not work in the long run."

pryelluw 9y ago

I just lost my mother to cancer and it was a hellish experience. It gives me joy to know someone out there beat it and that people in the near future may have a better chance than mom did. Congratulations on the recovery. Wish you many wonderful years full of life!

maxxxxx 9y ago

I am curious. How was the cancer found? Did you have any symptoms? How was the treatment?

byteCoder 9y ago
My melanoma was initially an ugly black mole that grew on the side of my face, which I had removed by my dermatologist and sent to pathology for analysis, where it was determined to be a melanoma of intermediate depth. Because of its depth into the skin tissue, I had a wide excision (where more skin tissue is removed) and a sentinel lymph node biopsy which removed four lymph nodes that were most closely connected to the tissue that was removed. Of the four nodes removed, three were negative (clear) and one had a micro metastasis (micromet) sized 0.18mm. This placed me at Stage IIIa. The melanoma developed as tumors in my lung just over a year later, putting me at Stage IV. The primary symptom I had was the mole. I felt completely normal. As far as the treatment, read my answer about the "hellish" nature of it in another reply.
- hycaria 9y ago
  Thanks for the info. This is one of the most terrifying cancers imo, metastating so fast, and with so few symptoms in the beginning. Congrats on your recovery !
known 9y ago
https://en.wikipedia.org/wiki/Fine-needle_aspiration https://en.wikipedia.org/wiki/Fine-needle_aspiration

deleted 9y ago

[deleted]

noam87 9y ago

I might be doing this treatment at some point since I failed Ipi and PD-1. -- What were the long-term side effects for you? -- Have you had neurological/memory problems since? Congrats on the success :)

byteCoder 9y ago
My biggest side effect has been vitiligo, the loss of color in my skin. The treatment caused my immune system to attack my melanocytes in addition to my melanoma cells. This is actually a great prognostic indicator. If that's the worst of it, I can handle it, especially considering the alternative.
- kaybe 9y ago
  Did you have to redo all the vaccinations?
  - byteCoder 9y ago
    Nope. As far as I know, I've retained my immunities. However, I do know that my seasonal allergies have changed slightly since treatment–they've actually moderated. I don't know if that's due to the treatment or just an age-related occurrence.
- TylerH 9y ago
  I've heard that vitiligo is almost entirely reversible without surgery, so you might not even have to live with it if you don't want to.

fgimenez 9y ago

Incredible. Also, getting treated by Steve Rosenberg is so awesome. Your results are literally the reason he'll get the Nobel prize within 10 years.

b3lvedere 9y ago

This is so awesome on so many levels. Congratulations byteCoder! I've had to witness my brother in law dying because of cancer. It's horrible.

shishy 9y ago

I used to work at the National Cancer Institute (tumor immunology research in liver cancer). I've met Dr. Rosenberg a number of times -- everyone there wonders if he'll get a Nobel Prize for his discovery of IL-2. It's really cool to see the patient's side of the journey though - and I'm very glad things turned out well for you. Thanks for sharing :).

zubspace 9y ago

Fascinating story. Thank you for sharing. Small question: How do you get into a trial like this? Did someone choose you? Are trials like this announced somewhere and you did apply? Word-of-mouth? Someone related who works in this field? It's hard to imagine how it feels to be diagnosed with cancer but I guess in many cases, if the outlook looks dim, a trial like this would make the most sense? Or not?

yread 9y ago
Getting into a trial usually involves a lot of criteria that the patient has to fulfill (age, subtype and stage of the disease, results of various tests, all kinds of other treatments not working, mutations or lack of them, good performance status, good organ function). If the patient fulfills them their doctor just asks them.

whoami_nr 9y ago

Won't the cancer cells mutate again after it figures out that the immune system is working successfully against it ? If they won't mutate why can't the body choose the white blood cells which are effective against it and amplify them ? Why does it have to be done externally in a lab ? If they do mutate again, what makes this treatment effective ? Excuse me for the basic questions,I have no experience in Biology or how antibiotics work.

dm319 9y ago
No, those are excellent questions. Our immune system is a force to be reckoned with for any cancers - we don't have figures on how many cancers our immune system clears before it meets one it cannot clear. So for cancer to survive, it has to thwart our immune system somehow, and one of the ways it does this is to use signalling pathways which dampen down the immune response. It communicates to the cancer 'calm down, don't call your friends'. The immune cells don't go away - instead they switch to a mode where they control rather than clear the cancer. Adoptive TIL therapy (which is not the same thing as the article is talking about, though they are both T cells) takes the immune cells from the cancer. These cells recognise the cancer as being foreign ('non-self') and in need of clearing, but they have been suppressed by signals from the cancer. In the lab the cells are selected and bred so that you have a pool of hyped-up cytotoxic T cells, which when transfused back into the patient are so aggressive even the suppressive signals from the cancer don't stop the killing. In fact, it's the mutations in the cancer which allow this therapy to work. Mutations are what makes the cancer 'non-self' - the more they have, the more attention they get from the immune system. If they try to hide their mutations (all cells must present the products of their DNA on the cell surface), they get removed by natural killer cells (so called because they naturally kill cells unless they display what they are meant to on the cell surface). The article actually talks about another type of treatment called CAR-T cell therapy. This is a bit different. What you do in this case is you take a T cell from the patient (not a tumour-infiltrating T cell - instead you want an effective T-killer cell), and they graft an antibody which is specific* for the tumour onto the cell. There are a few other steps to make sure that the cell survives in the patient, but essentially when you infuse this cell (ok they give more than one) into the patient, it recognises the target (hopefully the tumour), divides and kills, divides and kills etc etc until the tumour is gone. Then hopefully it stops dividing, or you end up with a T cell tumour. In this case - your question is right on target. The cancer can and does mutate to avoid this therapy. In this particular case the antibody is for CD19/CD20 (I can't remember), and it was able to clear the tumour before it could evolve to drop CD19/20 from the cell surface. In other patients subsequently treated, a proportion of them have relapse with tumour cells not displaying CD19 on the surface. In fact, this is the achille's heal of CAR-T cell treatment. It is essentially a very powerful antibody, but for it to work it needs a few things - 1. The tumour must have the target marker on all of its cells - i.e. it can't evolve out, 2. You must be happy to lose any healthy cells which also have this marker. In this case the patient lost all of his B cells. This is a powerful component of the immune system, but actually, you can get away without it, thankfully. This treatment wouldn't work for a T cell leukaemia/lymphoma. Removing all of your T cells gives you AIDS, which is no better than having a terminal cancer (when it's not caused by HIV, that is).