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An immunotherapy cautionary tale

Editgrl
Editgrl Member Posts: 903

I thought this was an interesting article, since immunotherapy is the "new" thing.  It brings up many points that we should be asking our doctors about when immunotherapy is recommended.

http://www.msn.com/en-us/news/technology/immune-system-unleashed-by-cancer-therapies-can-attack-organs/ar-AAl72FJ?li=BBnbcA1

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Chris, Thanks for sharing.

    Chris, Thanks for sharing.

    Even with the side effects, it sure feels like we are so close to a cure.  I like the idea that if all chemo/radiation fails that there is another option.

     

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    edited December 2016 #3
    Wow, Chris, that is very

    Wow, Chris, that is very interesting!  Our son who has had T1 diabetes since he was 16 started getting a tuberculosis vaccine today in a trial to see if it can turn off his own body from attacking itself and allow his body to produce its own insulin again.

    "We think we're seeing early evidence of effectiveness," said immunology researcher Denise Faustman of Massachusetts General Hospital, who led the trial. "This simple, inexpensive vaccine attacks the autoimmunity underlying type 1 diabetes."

     "That autoimmunity, in which the immune system turns on the body's own cells rather than invaders, destroys insulin-producing "islet" cells in the pancreas. As a result, patients have to regularly inject themselves with insulin to control their blood sugar, or glucose."

    Maybe something like this could be used to "turn off" the immunotherapy once it kills the cancer cells??  

    I KNOW there is a cure out there!!!  

    Love,

    Eldri

  • cindy0519
    cindy0519 Member Posts: 173
    Very interesting

    Very interesting and a great reminder that none of us are an exact copy of another and our bodies and cancer will respond to things differently. It is up to us as individuals (along with solid information from our medical team) to determine if the risk (even those unknown as they are always present) are worth it or not. 

  • Editgrl
    Editgrl Member Posts: 903
    edited December 2016 #5
    cindy0519 said:

    Very interesting

    Very interesting and a great reminder that none of us are an exact copy of another and our bodies and cancer will respond to things differently. It is up to us as individuals (along with solid information from our medical team) to determine if the risk (even those unknown as they are always present) are worth it or not. 

    You're right, Cindy.  I think

    You're right, Cindy.  I think the key is to make sure our medical teams are well-versed not only in our own risk factors for these sorts of reactions, but are aware enough to recognize the reactions for what they are and not attribute them to something else.  

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Thanks, Chris

    Read the article and found it interesting.  Just some thoughts.  

    Every advertisement for Keytruda and Opdivo list multiple possible side effects that include organ failure  and a whole range of other side effects that can happen during treatment or long after.  My oncologist talked about a lot of different side effects before I started.  He also warned me about some occurrences saying that I would need to let him know right away if these happened, like diarrhea, saying that it would not be like normal diarrhea and would need to be treated differently.  He has a long list we go through each visit.  He seems to believe that even serious side effects can be treated if treated quickly.  

    It seems like all medicines have some very adverse side effect.  Even Tylonal can cause problem.  I was scared to take the,Nuelasta shot because one of the side effects was instant death, but I did have it each time.  I had reactions to Carboplatin. .  Doxil allowed a tumor to cause complete bowel blockage.  You also have to have an electrocardiogram every few months while you are on it, because it can cause heart problems.  Avastin caused me to have a heart attack.

    When you are faced with the fact that you are running out of chemo options and will have to decide if you want to continue on harsh chemo with poor results or stop treatment, it is not had to try something new that may give you a chance for a longer life despite the possible side effects.  I don't know how long things will continue with this without something major happening, but I do know that I have a 5 months of a pretty good quality of life that I would not have had without trying the immunotherapy.  

    God will take me home when he wants me anyway.

    Lou Ann

  • Editgrl
    Editgrl Member Posts: 903
    edited December 2016 #7
    Lou Ann M said:

    Thanks, Chris

    Read the article and found it interesting.  Just some thoughts.  

    Every advertisement for Keytruda and Opdivo list multiple possible side effects that include organ failure  and a whole range of other side effects that can happen during treatment or long after.  My oncologist talked about a lot of different side effects before I started.  He also warned me about some occurrences saying that I would need to let him know right away if these happened, like diarrhea, saying that it would not be like normal diarrhea and would need to be treated differently.  He has a long list we go through each visit.  He seems to believe that even serious side effects can be treated if treated quickly.  

    It seems like all medicines have some very adverse side effect.  Even Tylonal can cause problem.  I was scared to take the,Nuelasta shot because one of the side effects was instant death, but I did have it each time.  I had reactions to Carboplatin. .  Doxil allowed a tumor to cause complete bowel blockage.  You also have to have an electrocardiogram every few months while you are on it, because it can cause heart problems.  Avastin caused me to have a heart attack.

    When you are faced with the fact that you are running out of chemo options and will have to decide if you want to continue on harsh chemo with poor results or stop treatment, it is not had to try something new that may give you a chance for a longer life despite the possible side effects.  I don't know how long things will continue with this without something major happening, but I do know that I have a 5 months of a pretty good quality of life that I would not have had without trying the immunotherapy.  

    God will take me home when he wants me anyway.

    Lou Ann

    Lou Ann

    I think you are absolutely right.  Your doctor is doing everything he can to stay on top of things and most importantly, to keep you informed.  That isn't always the way things happen, as you know.  I think the article just emphasizes how much we all, as patients and doctors, must be aware of the possibilities.  The fact that many of these side effects can be treated is good news as long as those side effects are recognized quickly and I think that's what was concerning in the article.  

    I did not mean to pooh-pooh immunotherapy in any way.  I think it indeed will turn out to be a powerful tool for fighting cancer, and perhaps that long sought after key to a cure.  You are a prime example of what it can do.

  • Lou Ann M
    Lou Ann M Member Posts: 996
    You didn't pooh, pooh anything

    The article was very truthful.  People need to be informed before they just jump into something new.  It is not a one size fits all.  As research continues maybe it will be, but there still needs work.  So far I am one of the lucky ones.  Don't know how long that will last, but it has given me a chance for a longer life.  I am very very blessed to have the oncologist that,I have.  He is young, brilliant, and caring.  Anyone thinking of going this route really need to be informed as to all the possible outcomes.

    Lou Ann

  • derMaus
    derMaus Member Posts: 558
    edited December 2016 #9
    Thanks, Chris!

    Really appreciate your posting this; it's very timely as I see my onc tomorrow for surgical follow-up and discussion of a treatment plan. I will be seeking a second opinion, regardless, but your point about doing our own education couldn't be more spot on. Thank you!

  • Soup52
    Soup52 Member Posts: 905
    I am not able to use any of

    I am not able to use any of these links. Is it because I'm using my iPad instead of my laptop?

  • MAbound
    MAbound Member Posts: 1,156 **
    Working out kinks

    I get the NY Times and had seen this article and a few other earlier, similar ones. Thanks for posting this Chris and your response Lou Ann. The other thing that needs to be remembered about immunotherapy is that its still in the trial phases and they are still working out some of the kinks like who might or might not benefit from it, what's the best dose and how long does it need to be or can be taken besides identifying all of the potential risks and side effects. It's going to be a while before it becomes part of the standard of care, if it ever does, so we're probably going to read more stories like this that will be pretty scary, but so far Lou Ann's journey is certainly a bright spot of hope for all of us. Has there been any discussion about how long you'll be taking Keytruda Lou Ann?

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Soup52 said:

    I am not able to use any of

    I am not able to use any of these links. Is it because I'm using my iPad instead of my laptop?

    Soup, I did a copy and paste.

    Soup, I did a copy and paste.

    Love,

    Eldri

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Lou Ann M said:

    You didn't pooh, pooh anything

    The article was very truthful.  People need to be informed before they just jump into something new.  It is not a one size fits all.  As research continues maybe it will be, but there still needs work.  So far I am one of the lucky ones.  Don't know how long that will last, but it has given me a chance for a longer life.  I am very very blessed to have the oncologist that,I have.  He is young, brilliant, and caring.  Anyone thinking of going this route really need to be informed as to all the possible outcomes.

    Lou Ann

    LouAnn, I love, love, love

    LouAnn, I love, love, love your attitude and approach. It is ladies like you that pave the way for the rest of us that may have a need down the road.

    I'm so glad that you have the best of care. As you know, not all oncologists are equal and many don't explain what can happen or take the time to monitor to the level that yours does. You deserve the best and I pray that you will be writing a much longer story for many years to come!

    Chris - knowledge is power. I don't think any of us take offense to information that provides us additional things to watch for.

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996
    MAbound said:

    Working out kinks

    I get the NY Times and had seen this article and a few other earlier, similar ones. Thanks for posting this Chris and your response Lou Ann. The other thing that needs to be remembered about immunotherapy is that its still in the trial phases and they are still working out some of the kinks like who might or might not benefit from it, what's the best dose and how long does it need to be or can be taken besides identifying all of the potential risks and side effects. It's going to be a while before it becomes part of the standard of care, if it ever does, so we're probably going to read more stories like this that will be pretty scary, but so far Lou Ann's journey is certainly a bright spot of hope for all of us. Has there been any discussion about how long you'll be taking Keytruda Lou Ann?

    How long????

    Not really discussed, but my oncologist and his PA have both talked about the fact that how long you have to take it is still unknown.  He said that they don't know if one round activates your immune system to attack for ever or if you need many rounds.  I am not near NED yet, so maybe when we get closer to we will talk about how many and when to stop.  Right now as long has it seems to be working we are plowing ahead. He also says there is no evidence as to why it works with one person and not another.  You are right about immunotherapy still being in the trial stage. There is still a lot about it that or unknown, although it has been aproved for several types of cancer for after frontline.  The other day I heard I was approved as front line for one type, but I can't remember which kind it was.  

    Lou Ann

  • Double Whammy
    Double Whammy Member Posts: 2,832
    The benefits need to outweigh the risks

    Recently I attended  a lecture given by a breast cancer oncologist.  He spoke about how everyone is so excited about "immunotherapy" for cancer treatments vs. traditional chemotherapy, but drove the point home that revving up one's immune system brings with it its own set of serious side effects.  I definitely believe it is worth having that conversation with your docs about the right treatment for you.  Afterall,  this is not a one-size fits all disease.  I am still enthusiastic about immunotherapy but I honestly had no idea what that really meant.  My understanding was so simplistic.  The article you posted is quite good. I would probably be willing to take the risk given the alternative (afterall, chemo is risky, isn't it?) after I did a lot of my own research and felt that it was for me, the best course of treatment.  I certainly never want to be an oncologist when I grow up. . .

    Suzanne 

  • MAbound
    MAbound Member Posts: 1,156 **
    Hot Topic

    So...here's another article on the topic in the NY Times this morning. 

    http://www.nytimes.com/2016/12/07/health/cancer-immunotherapy.html?nl=todaysheadlines&emc=edit_th_20161208&_r=0 

    It's for colon cancer, but with Lynch Syndrome a risk factor for endometrial as well as colon cancer, who knows if the drug being tested here will also work for endometrial cancer, too, as they get more into their testing. It just goes to show that genetic testing is going to be playing a bigger role in treating us so they can know who will benefit or not from these different options that are being currently researched. Just wish insurance companies wouldn't be so reluctant to help with the costs as they are now. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Thanks MA.  I have Lynch. And

    Thanks MA.  I have Lynch. And so does my sister... This article brings hope that they are making great strides with this.

    Love and Hugs,

    Cindi

  • bluehyacinth
    bluehyacinth Member Posts: 50
    Lou Ann M said:

    How long????

    Not really discussed, but my oncologist and his PA have both talked about the fact that how long you have to take it is still unknown.  He said that they don't know if one round activates your immune system to attack for ever or if you need many rounds.  I am not near NED yet, so maybe when we get closer to we will talk about how many and when to stop.  Right now as long has it seems to be working we are plowing ahead. He also says there is no evidence as to why it works with one person and not another.  You are right about immunotherapy still being in the trial stage. There is still a lot about it that or unknown, although it has been aproved for several types of cancer for after frontline.  The other day I heard I was approved as front line for one type, but I can't remember which kind it was.  

    Lou Ann

    They know it works better for

    They know it works better for certain mutations and I have at least one of those. People here seem to think you can just get on these drugs, but no insurance would approve it.  I am a treated at a research hospital, my local hospital would have nothing to do with that (no profit). Both Lou Ann and I have end stage UPSC. This is the future and one day it will work great, chemo is the past still puttering along with big fat profits. I prefer dying for progress.