Has Anyone Explored the Immunotherapy Drugs?

Kim Gaia

I have been researching the new immunotherapy drugs as a possible alternative to chemo-radiation treatment for anal cancer. I am talking about drugs such as Keytruda (pembrolizumab) and Opdivo (nivolumab). There are others. Has anybody here gone this route for anal cancer? Perhaps via a clinical trial? Or via some off-label use that a doctor arranged for you? I have seen reports saying that both Keytruda and Opdivo are 'promising' for anal cancer, based on clinical trial results.

In my case, my likelihood of chemo-radiation being curative are not particularly good (less than 50%). And I have been told that, in my case, if chemo-radiation is not curative, then salvage surgery (APR) won't be either. This is why I am seriously looking into immunotherapy, even if I have to go into debt to pay for it. Drug companies also have Compassionate Access programs to cover drug costs for patients who qualify.

kim

eihtak

kim...

Hi, I'm sorry I don't have much to offer regarding some of the new immunotherapy drugs but will surely be interested to learn more. I could be wrong but I thought that I read somewhere that Opdivo was only available following the use of a platinum based chemotherapy drug such as Cisplatin or Mitomycin (both of which are protocal chemo drugs for treating anal cancer). Opdivo was then given if the cancer did not respond and continued to grow. (This may not have applied specifically to anal cancer though)

As of today I am fortunate to say I have had good results from the standard chemo/rad treatment I had received initially, over 7 years ago. I have also been treated for breast cancer and 3 years ago anal cancer mets to my lung. I don't doubt that the toxicity of all my treatment has taken its toll and short of a miracle, don't know how I am doing so well today, but I am! I do however question my future options if needed so am anxious to learn what I can.

I wish you goodness and peace on your journey to health, and look forward to reading what you find.

katheryn

Kim Gaia

eihtak said:

kim...

Hi, I'm sorry I don't have much to offer regarding some of the new immunotherapy drugs but will surely be interested to learn more. I could be wrong but I thought that I read somewhere that Opdivo was only available following the use of a platinum based chemotherapy drug such as Cisplatin or Mitomycin (both of which are protocal chemo drugs for treating anal cancer). Opdivo was then given if the cancer did not respond and continued to grow. (This may not have applied specifically to anal cancer though)

As of today I am fortunate to say I have had good results from the standard chemo/rad treatment I had received initially, over 7 years ago. I have also been treated for breast cancer and 3 years ago anal cancer mets to my lung. I don't doubt that the toxicity of all my treatment has taken its toll and short of a miracle, don't know how I am doing so well today, but I am! I do however question my future options if needed so am anxious to learn what I can.

I wish you goodness and peace on your journey to health, and look forward to reading what you find.

katheryn

Hi Katheryn. Opdivo (or

Hi Katheryn. Opdivo (or Keytruda or any of the available immunotherapy drugs) is available off-label if you can find a doctor who will set you up with it. I have a doctor who is willing to make that happen if I can self-pay. The rules you are citing pertain to getting funded coverage through the health care system. My main interest here is: would Opvido or Keytruda give me better odds for achieving NED or stabilization, than chemo-radiation (which is not giving me good odds on cure). Am trying to get a consult with another doctor I can have a detailed convo with. I would go into debt to save my life and health. Also there are other potential avenues for funding the immunotherapy drugs, if a doctor is willing to be proactive for a patient.

Kim Gaia

eihtak said:

kim...

Hi, I'm sorry I don't have much to offer regarding some of the new immunotherapy drugs but will surely be interested to learn more. I could be wrong but I thought that I read somewhere that Opdivo was only available following the use of a platinum based chemotherapy drug such as Cisplatin or Mitomycin (both of which are protocal chemo drugs for treating anal cancer). Opdivo was then given if the cancer did not respond and continued to grow. (This may not have applied specifically to anal cancer though)

As of today I am fortunate to say I have had good results from the standard chemo/rad treatment I had received initially, over 7 years ago. I have also been treated for breast cancer and 3 years ago anal cancer mets to my lung. I don't doubt that the toxicity of all my treatment has taken its toll and short of a miracle, don't know how I am doing so well today, but I am! I do however question my future options if needed so am anxious to learn what I can.

I wish you goodness and peace on your journey to health, and look forward to reading what you find.

katheryn

Meant to add: That's GREAT

Meant to add: That's GREAT that you are now 7 years out from your original AC treatment, and that you made it through breast cancer treatment and AC mets to lungs. Good for you, katheryn! I hope I also have a success story to share someday.

kim

tanda

Kim Gaia

There are some anal cancer patients on blogforacure.org that have been treated with immunotherapy.  I think they have had traditional therapy first and are now being treated on a clinical trial. In some cases, there were stabilizations and, in other caes, they were unsuccessful. 

Immunotherapy, at this stage is a bit of a shot in the dark; there is not enough data to really know what drug would work on what cancer or on which patient. I would be surprised if a doctor would guarantee a cure with immunotherapy alone--at least, at this point, for this cancer which has not been invetigated.

MDAnderson is Houston is a center of excellence for anal cancer

 

 

Kim Gaia

tanda said:

Kim Gaia

There are some anal cancer patients on blogforacure.org that have been treated with immunotherapy.  I think they have had traditional therapy first and are now being treated on a clinical trial. In some cases, there were stabilizations and, in other caes, they were unsuccessful. 

Immunotherapy, at this stage is a bit of a shot in the dark; there is not enough data to really know what drug would work on what cancer or on which patient. I would be surprised if a doctor would guarantee a cure with immunotherapy alone--at least, at this point, for this cancer which has not been invetigated.

MDAnderson is Houston is a center of excellence for anal cancer

 

 

Thanks for the pointer to

Thanks for the pointer to blogforcure, tanda. I had not known about that site. Will check it out.

No responsible doctor can guarantee a cure for cancer using any treatment modality, so immunotherapy is no different in that regard. My specific odds of cure with chemo-radiation are 30-45%, according to my radiation oncologist. And my specific odds for cure with salvage surgery after chemo-radiation are zero, according to my surgeon. That's a great deal of trauma and damage and reduction in healing capacity to inflict upon my body for no cure. It is therefore not really a logical treatment choice for me if there are any other options. I think chemo-radiation would guarantee my death. Whereas, it's quite possible that immunotherapy (in conjunction with the alternative treatments I am already doing) could yield odds at least as good if not better than chemo-radiation, when counting BOTH possible outcomes of immunotherapy: No Evidence of Disease, or stabilization. Chemo-radiation does not offer stabilization. It either cures you or you are worse off with your cancer.

There are no easy or right answers in my case, where my odds of chemo-radiation being curative are so low. In fact, the oncologists admit I may already be palliative by their definition. They are waiting on a PET scan, but even that may not clarify for them whether I am curable or palliative because my lymph nodes are also occupied by a second cancer that is currently well-controlled with a drug. And if I am palliative in terms of what chemo-radiation can do for my AC, then all the more reason for me to pursue alternatives now, before chemo-radiation flattens my immune system and health.

I don't come on this site much anymore, so I may not see replies right away, if at all. I have found this forum to not be very receptive to or supportive of members who are using logic and doctor information to calculate their odds, and who recognize there are choices in how to address AC (or any cancer), and who can see that in their own case chemo-radiation may not be the best or most logical treatment path to pursue for their survival. This forum seems to only be able to support or even understand members who are choosing chemo-radiation. And of course, those who choose chemo-radiation (or are led there by there doctors without even considering other options that may be better for them) and then die - well those patients don't post. So this forum can provide a skewed picture suggesting everyone treated with chemo-radiation for AC will survive. This, in fact, isn't true. And my paritcular odds say it would not likely be true in my case. I must make the choices that have the best lieklihood of keeping me alive.

kim

sephie

what????

Kim,,,, we all want everyone to chose the treatment that is best for them.....Yes,  many of us have had concurrent chemo-radiation but we dont want you to do anything that you do not feel is right for you......my doctors gave me 80% chance with stage 2 anal cancer by using concurrent chemo-radiation so i chose it..... i am now 9 years after tx...    We also invite new ideas and new info ........thx...sephie

Kim Gaia

sephie said:

what????

Kim,,,, we all want everyone to chose the treatment that is best for them.....Yes,  many of us have had concurrent chemo-radiation but we dont want you to do anything that you do not feel is right for you......my doctors gave me 80% chance with stage 2 anal cancer by using concurrent chemo-radiation so i chose it..... i am now 9 years after tx...    We also invite new ideas and new info ........thx...sephie

Thanks sephie! And congrats

Thanks sephie! And congrats on your own success. I appreciate you sharing your supportive view of each patient selecting a treatment path that is best for him/her. That is not the predominant view I have encountered here. In fact, the orthodoxy about chemo-radiation being the only valid treatment for AC is very strong in this forum. However, I know there are members who can see a broader picture.

kim

 

Kim Gaia

Kim Gaia said:

Thanks sephie! And congrats

Thanks sephie! And congrats on your own success. I appreciate you sharing your supportive view of each patient selecting a treatment path that is best for him/her. That is not the predominant view I have encountered here. In fact, the orthodoxy about chemo-radiation being the only valid treatment for AC is very strong in this forum. However, I know there are members who can see a broader picture.

kim

 

p.s. If I had been giving 80%

p.s. If I had been giving 80% odds on chemo-radiation being curative in my case, instead of 30-45% odds, I would have chosen that path too. ~kim

Msmoxie

another AC case late stage when found

I too am a person that was diagnosed late stage with 5cm tumor on my sphincters nearly a year ago now.  Like Kim... I have numerous issues that along with the "standard protocol" and prognosis... I know that I would not survive the chemo... I can't accept the collateral damage of radiation (not only short term immediate burns but the fusing, death and damage to internal organs and tissues).  In actual NIH papers they say "removal of lymph nodes in anal cancer is purely speculative".  Reading about people that went through chemo/radiation for various cancers with no cure... no response... but then going to anti-angiogenic diets and becoming cancer-free... I am very happy to continue my own research.  I am waiting for my appointment at Memorial Sloan in Manhattan.  At this time I only have the incontinence to deal with and am otherwise symptom free.  My doctors are supportive and help me get anything I need for palliative care (primarily my Flexaril for the occasional muscle spasms that can be painful) and they monitor my bloodwork and overall wellness.  I am thinking of the colostomy ONLY if I get any blockage where I would not be able to have a BM.  I want to have a good group of understanding doctors around me in case this would be necessary down the road.  Other than that I am still living my life fully and without the loss of quality of life that I know would come from "standard protocol" treatments.  

I just met with the breast cancer surgeon last week and he is on the same page with me.  My tumor is small... not attached to my ribcage ... very close to the surface of my skin... definitely not an aggressive tumor (actually getting smaller since dx)... so he is good with me just having the lumpectomy.  No radiation, no chemo, no lymph node removal : )  and even this I am taking my time because the anal cancer is the demon I am going after with a vengeance.  

I continue my orthobionomy, acupuncture, supplements and pretty much anything that has shown promise in stimulating and reinforcing my immune system.  

I pray that together we can find a better way.. LESS TOXIC... LESS SIDE EFFECTS... LESS TIME IN TREATMENTS, RE-TREATMENTS, LESS NEW CANCERS DEVELOPING... The doctors know this too but all they have to work with is what BIG PHARMA provides for them and their facilities liability policies will allow ... The more of us that spend time researching and actually taking the alternative route may provide some insight that the physicians would not otherwise see.

And to those who were diagnosed early stage and chemo/rad helped them to achieve NED or stabilization... Awesome!!  I know from a lot of personal experience that you went through some very difficult times. 

I currently have two friends in treatment for only three months now and they are in the midst of the chemo side effects (neither is in radiation therapy yet) and they are miserable.  I send healing and positive energies to all who are suffering.    

eihtak

Kim Gaia said:

Thanks for the pointer to

Thanks for the pointer to blogforcure, tanda. I had not known about that site. Will check it out.

No responsible doctor can guarantee a cure for cancer using any treatment modality, so immunotherapy is no different in that regard. My specific odds of cure with chemo-radiation are 30-45%, according to my radiation oncologist. And my specific odds for cure with salvage surgery after chemo-radiation are zero, according to my surgeon. That's a great deal of trauma and damage and reduction in healing capacity to inflict upon my body for no cure. It is therefore not really a logical treatment choice for me if there are any other options. I think chemo-radiation would guarantee my death. Whereas, it's quite possible that immunotherapy (in conjunction with the alternative treatments I am already doing) could yield odds at least as good if not better than chemo-radiation, when counting BOTH possible outcomes of immunotherapy: No Evidence of Disease, or stabilization. Chemo-radiation does not offer stabilization. It either cures you or you are worse off with your cancer.

There are no easy or right answers in my case, where my odds of chemo-radiation being curative are so low. In fact, the oncologists admit I may already be palliative by their definition. They are waiting on a PET scan, but even that may not clarify for them whether I am curable or palliative because my lymph nodes are also occupied by a second cancer that is currently well-controlled with a drug. And if I am palliative in terms of what chemo-radiation can do for my AC, then all the more reason for me to pursue alternatives now, before chemo-radiation flattens my immune system and health.

I don't come on this site much anymore, so I may not see replies right away, if at all. I have found this forum to not be very receptive to or supportive of members who are using logic and doctor information to calculate their odds, and who recognize there are choices in how to address AC (or any cancer), and who can see that in their own case chemo-radiation may not be the best or most logical treatment path to pursue for their survival. This forum seems to only be able to support or even understand members who are choosing chemo-radiation. And of course, those who choose chemo-radiation (or are led there by there doctors without even considering other options that may be better for them) and then die - well those patients don't post. So this forum can provide a skewed picture suggesting everyone treated with chemo-radiation for AC will survive. This, in fact, isn't true. And my paritcular odds say it would not likely be true in my case. I must make the choices that have the best lieklihood of keeping me alive.

kim

Kim Gaia...

Hi,

I think its true that if we were to survey the people who post here the bulk of them would fall into being dx with stage 2 anal cancer with pretty good survival/curative odds from protocal chemo/rad treatment. There of course are also others on both ends of the scale as well and then just a few who deal with more than that dx. You are one of those, who unfortunately went into this already dealing with CLL (I apologize if I am wrong). 

Your options are not necessarily the same and so probably difficult to find the specific support you could use in navigating this ordeal. That sucks and I am sorry. Know that many people also spend much time lurking here and reading but do not post so your insight may be of great help to someone else though.

Since my initial dx of stage 3 anal cancer, followed by breast cancer, and then years later a recurrance of the anal cancer as mets in my lung, my future options are dwindling as well so am very interested in any effective alternative treatments you may learn about and share.

I think of you often and your unique situation and truly do hope you find the path that works best for you.

katheryn

Ouch_Ouch_Ouch

Msmoxie said:

another AC case late stage when found

I too am a person that was diagnosed late stage with 5cm tumor on my sphincters nearly a year ago now.  Like Kim... I have numerous issues that along with the "standard protocol" and prognosis... I know that I would not survive the chemo... I can't accept the collateral damage of radiation (not only short term immediate burns but the fusing, death and damage to internal organs and tissues).  In actual NIH papers they say "removal of lymph nodes in anal cancer is purely speculative".  Reading about people that went through chemo/radiation for various cancers with no cure... no response... but then going to anti-angiogenic diets and becoming cancer-free... I am very happy to continue my own research.  I am waiting for my appointment at Memorial Sloan in Manhattan.  At this time I only have the incontinence to deal with and am otherwise symptom free.  My doctors are supportive and help me get anything I need for palliative care (primarily my Flexaril for the occasional muscle spasms that can be painful) and they monitor my bloodwork and overall wellness.  I am thinking of the colostomy ONLY if I get any blockage where I would not be able to have a BM.  I want to have a good group of understanding doctors around me in case this would be necessary down the road.  Other than that I am still living my life fully and without the loss of quality of life that I know would come from "standard protocol" treatments.  

I just met with the breast cancer surgeon last week and he is on the same page with me.  My tumor is small... not attached to my ribcage ... very close to the surface of my skin... definitely not an aggressive tumor (actually getting smaller since dx)... so he is good with me just having the lumpectomy.  No radiation, no chemo, no lymph node removal : )  and even this I am taking my time because the anal cancer is the demon I am going after with a vengeance.  

I continue my orthobionomy, acupuncture, supplements and pretty much anything that has shown promise in stimulating and reinforcing my immune system.  

I pray that together we can find a better way.. LESS TOXIC... LESS SIDE EFFECTS... LESS TIME IN TREATMENTS, RE-TREATMENTS, LESS NEW CANCERS DEVELOPING... The doctors know this too but all they have to work with is what BIG PHARMA provides for them and their facilities liability policies will allow ... The more of us that spend time researching and actually taking the alternative route may provide some insight that the physicians would not otherwise see.

And to those who were diagnosed early stage and chemo/rad helped them to achieve NED or stabilization... Awesome!!  I know from a lot of personal experience that you went through some very difficult times. 

I currently have two friends in treatment for only three months now and they are in the midst of the chemo side effects (neither is in radiation therapy yet) and they are miserable.  I send healing and positive energies to all who are suffering.    

"Reading about people that

"Reading about people that went through chemo/radiation for various cancers with no cure... no response... "

It's true that some people can have cancer recurrences or metasises (I may be one of them), but aside from implacable cancers like lung cancer and pancreatic cancer, the survival rates for most cancers have risen dramatically in the past decade or two. And with the arc of current research, people may not be taking chemotherapy at all in the next decade or two. And remember that cancer is not one big disease, but many specialized diseases with a lot of variables. One person may succumb quickly to pancreatic cancer, but another with malignant melanoma may quickly heal and be back on the beach, but with sunscreen, a big hat, and an umbrella this time.

However, you have cancer now. I understand what you are saying about the quality of life you want, but don't be so hardened that you won't consider what the MSKCC docs recommend. Otherwise, why go? I have an appointment there for June 5th with radiation oncologist Dr Wu, to discuss a clinical trial they are conducting for anal cancer. If I don't qualify, I will still seek treatment there anyhow.

And keep telling all the parents you know to get those kids immunized against HPV.

Truly, all the best.

Msmoxie

Ouch_Ouch_Ouch said:

"Reading about people that

"Reading about people that went through chemo/radiation for various cancers with no cure... no response... "

It's true that some people can have cancer recurrences or metasises (I may be one of them), but aside from implacable cancers like lung cancer and pancreatic cancer, the survival rates for most cancers have risen dramatically in the past decade or two. And with the arc of current research, people may not be taking chemotherapy at all in the next decade or two. And remember that cancer is not one big disease, but many specialized diseases with a lot of variables. One person may succumb quickly to pancreatic cancer, but another with malignant melanoma may quickly heal and be back on the beach, but with sunscreen, a big hat, and an umbrella this time.

However, you have cancer now. I understand what you are saying about the quality of life you want, but don't be so hardened that you won't consider what the MSKCC docs recommend. Otherwise, why go? I have an appointment there for June 5th with radiation oncologist Dr Wu, to discuss a clinical trial they are conducting for anal cancer. If I don't qualify, I will still seek treatment there anyhow.

And keep telling all the parents you know to get those kids immunized against HPV.

Truly, all the best.

Not hardened

Of course I am going to MSK for the consultation.  That IS the point.  I want to see what their approach would be to my particular situation because I believe the standard protocol is too harsh for MY body and I have the medical information and diagnoses to show them.  I have yet to see anyone on this anal cancer site that has a tumor on their sphincters that is the size of a key lime...with fecal incontinence and recto-vaginal fistula... that is how late they found mine... and on my first appointment with an oncologist (in addition to the gastroenterologist) saying "There is only ONE way to treat this anal cancer... two strong chemo drugs simultaneoustly with strong radiation therapy"... there is never only one way.

It is through the efforts of my radiation oncologist that I met with initially that I am able to have the consult at MSK.  HE told me himself that he is a general radiation oncologist and has only seen FOUR people with anal cancer in his experience.  IF you want someone that can offer something other than standard protocol you have to go to one of the top cancer treatment centers in the country as they have a much larger volume and have seen much larger numbers of people diagnosed with anal cancer.  

There is never only one way to treat these cancers... the papers from NIH, multiple journals and even last weeks convention for oncologists prove it.   And I believe too that they will get away from chemo...5FU was developed in 1974 and they have not found a better/less toxic drug yet???  

And, as I shared on another post... the organization that sets the standard protocols says on their own home page: If you have been diagnosed with cancer, your best bet is to join a clinical trial.  IF you qualify.

I am open-minded to see what my options are but I still hold true to my preserving my quality of life over quantity (to each his own).  

Hoping your own cancer treatments work for you and that your meeting with Dr. Wu goes well.

Moxie

Shoultz

Immunotherapy drugs

i just started immunotherapy for Stage 4 anal cancer.  I had chemo/ radiation (cisplatin and 5 fu) completing in April In Florida.  We are snowbirds and when I got back i went to Mayo and had my first treatment last week.  I was given Oodivo in my port and the whole thing lasted 30 minutes! The only side effect I noticed was tiredness.  I will go every two weeks then once a month.  After a couple of months they will do another Ct scan to see if the drug is working.  Will post then.

Kim Gaia

Shoultz said:

Immunotherapy drugs

i just started immunotherapy for Stage 4 anal cancer.  I had chemo/ radiation (cisplatin and 5 fu) completing in April In Florida.  We are snowbirds and when I got back i went to Mayo and had my first treatment last week.  I was given Oodivo in my port and the whole thing lasted 30 minutes! The only side effect I noticed was tiredness.  I will go every two weeks then once a month.  After a couple of months they will do another Ct scan to see if the drug is working.  Will post then.

I will be very excited to

I will be very excited to follow your progress Shoultz! Good luck. In another Anal Cancer forum I particiapte in, a woman with stage 4 metastatic AC has just had her first infustion of Keytruda - one of the other popular immunotherapy drugs. I am following both of your cases with much interest.

Is your Opdivo funded by the health care system? Are you in the US? Here in Canada, the only way I can get it is to self-pay at a cost of $6,000 per infusion, since Health Canada has not yet authorized its usage for anal cancer. Am considering it nevertheless.

Glad to hear your only side effect so far is tiredness!

kim

Ouch_Ouch_Ouch

Msmoxie said:

Not hardened

Of course I am going to MSK for the consultation.  That IS the point.  I want to see what their approach would be to my particular situation because I believe the standard protocol is too harsh for MY body and I have the medical information and diagnoses to show them.  I have yet to see anyone on this anal cancer site that has a tumor on their sphincters that is the size of a key lime...with fecal incontinence and recto-vaginal fistula... that is how late they found mine... and on my first appointment with an oncologist (in addition to the gastroenterologist) saying "There is only ONE way to treat this anal cancer... two strong chemo drugs simultaneoustly with strong radiation therapy"... there is never only one way.

It is through the efforts of my radiation oncologist that I met with initially that I am able to have the consult at MSK.  HE told me himself that he is a general radiation oncologist and has only seen FOUR people with anal cancer in his experience.  IF you want someone that can offer something other than standard protocol you have to go to one of the top cancer treatment centers in the country as they have a much larger volume and have seen much larger numbers of people diagnosed with anal cancer.  

There is never only one way to treat these cancers... the papers from NIH, multiple journals and even last weeks convention for oncologists prove it.   And I believe too that they will get away from chemo...5FU was developed in 1974 and they have not found a better/less toxic drug yet???  

And, as I shared on another post... the organization that sets the standard protocols says on their own home page: If you have been diagnosed with cancer, your best bet is to join a clinical trial.  IF you qualify.

I am open-minded to see what my options are but I still hold true to my preserving my quality of life over quantity (to each his own).  

Hoping your own cancer treatments work for you and that your meeting with Dr. Wu goes well.

Moxie

[PS...]

It turns out that I'm not eligible for Dr Wu's clinical trial since the effected node is far from my anus. Dr Crane (radiation oncologist) tells me that treatment now is even better than it was when I was first diagnosed in 2014. He says I have about an 90% chance of becoming cancer free this time.

How did your MSKCC trip turn out?

K8M

MsMoxie - just wanted to say

MsMoxie - just wanted to say how inspiring you are. Totally agree about challenging standard protocols. Offering up and shating information and ideas is essential to continual treatment improvements. 

Bless you for your remarkable stoicism