Experience with Immunotherapy?
Hello,
I have been following this forum since my wife was first diagnosed with tongue cancer in October 2016 and would like to thank everyone for sharing their experience that helped us a lot to stay strong and positive.
My wife is still going through her cancer treatment, we would like to get some advice on the next treatment. I'll start with the treatment summary she has gone through so far:
October 2016: Diagnosed with Squamous cell carcinoma of tongue (HPV negative).
November 2016: Surgery removing one-third of the tongue (replaced with the skin graft from wrist) and some lymph nodes from the neck.
January and February 2017: Radiation (33 sessions) and Chemo using Cisplatin (3 sessions).
May 2017: First CT scan after the end of radiation and chemo treatment. The scan showed some glow under the clavicle area.
June 2017: After bronchoscopy and mediastinoscopy, the glow in the scan was identified as cancer. Breathing started becoming a challenge, steroid was prescribed to control the swelling around the trachea.
July 2017: Decided to get the second opinion from UCLA doctors, they decided to put a stent in the trachea before starting the radiation and chemo again. Breathing became better but still a challenge.
August 2017: Radiation treatment (10 sessions) with 4 erbitux infusions.
August 2017: Two weeks after the treatment, the radiation oncologist scoped the trachea area and was disappointed to see traces of cancer around the voicebox and shrunk windpipe. My wife was admitted immediately for further scans and testing.
September 2017: While staying at the hospital, the stent was removed, tracheostomy was performed to help with breathing, GI tube was placed and biopsy was taken for cancer testing. There was some swelling (about 10%) around face and neck area and doctors blamed the use of steroid for 2 months.
September 2017: The biopsy came out positive for cancer. The doctors decided to just do chemo this time and start while she was at the hospital. The TPF chemo infusion was performed (using Carboplatin instead of Cisplatin) that takes 4 days to complete. The side effects were extreme this time, lost hair, the face has severe swelling (almost twice the size), can't climb stairs or walk 20 steps continuously. After chemo, seven days were spent in the hospital with three blood transfusions and several electrolyte transfusions. Two weeks after the end of TPF chemo (09/28/2017), another scan was performed which shows cancer progression around the lung and trachea areas.
We are in our early 30s and are devastated by these constant attacks. During our last visit to our medical oncologist at UCLA before 09/28/2017 scan, we were told that it's up to us whether we would like to continue with the TPF chemo or start working on immunotherapy. But for either one, my wife needs to show some strength and qualify to go through another treatment. It was never a strength of our medical oncologist to sound positive or hopeful but now, especially when we need it, her tone is more negative. Now after learning that the TPF chemo is not working, we want to start on immunotherapy as soon as possible. We plan to see the medical oncologist tomorrow if possible and request to start on immunotherapy right away somehow. Our apartment is like a small hospital with all the types of equipment for transportation, breathing, and feeding tube.
I'm not sure if my wife will qualify for immunotherapy and if she does, how fast our UCLA doctor can put her on it. Sorry for the long story but I couldn't condense it more. Does anyone have any knowledge or experience with Immunotherapy, your help is highly appreciated.
Thank you.
Comments
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welcome
PolarDini,
Welcome to the H&N forum, I am so truly sorry that you are here.
Two members come to mind and you may want to send them a Private Message to see if they can shed any light on this. I would PM laralyn or phrannie51, they both have experience which may help.
Good luck.
Matt
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Some info on immunotherapy
Hi, PolarDini!
I had SCC HPV+ in my left tonsil and soft palate in 2012, and then in my right lung in 2015. I had chemo-radiation both times, cisplatin the first time then carboplatin the second. The cancer came back in mid-2016. I was at UCLA and offered a trial of a new drug that worked similar to Opdivo and Keytruda. I did some research and discovered that combination immunotherapy trials often have higher response rates than a single agent. They didn't offer that trial at UCLA so I switched to The Angeles Clinic.
I got good care at UCLA but I really LOVE my oncologist at The Angeles Clinic, Dr. Ani Balmanoukian. I'm in a clinical trial that combines Opdivo with a second agent called epacadostat. I had a complete response and have been cancer-free for almost a year now. That's a rare result but there are other folks on the trial whose cancer has shrunk or remained stable. UCLA (or any medical facility) can only offer trials they have at that facility, so it's worth getting a second or even third opinion. You can also browse trials yourself here or ask for help from this agency.
I've had an unusual number of side effects from the trial so far, but while they've been inconvenient, they haven't been serious. Overall, the quality of life on the trial is much better than with chemo. As I said, response rates are higher on combination trials--sometimes as much as twice as high--so IMO it's definitely worth a few appointments to see if you'd qualify for one. I'd be glad to connect you to Dr. Balmanoukian if you'd like to see her. Other good sources for a second opinion--hospitals with the most cutting edge trials--in LA would be Cedars Sinai (with which The Angeles Clinic is affiliated) and USC's Keck Cancer Center.
Let me know if I can help!
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Well now.....Laralyn said:Some info on immunotherapy
Hi, PolarDini!
I had SCC HPV+ in my left tonsil and soft palate in 2012, and then in my right lung in 2015. I had chemo-radiation both times, cisplatin the first time then carboplatin the second. The cancer came back in mid-2016. I was at UCLA and offered a trial of a new drug that worked similar to Opdivo and Keytruda. I did some research and discovered that combination immunotherapy trials often have higher response rates than a single agent. They didn't offer that trial at UCLA so I switched to The Angeles Clinic.
I got good care at UCLA but I really LOVE my oncologist at The Angeles Clinic, Dr. Ani Balmanoukian. I'm in a clinical trial that combines Opdivo with a second agent called epacadostat. I had a complete response and have been cancer-free for almost a year now. That's a rare result but there are other folks on the trial whose cancer has shrunk or remained stable. UCLA (or any medical facility) can only offer trials they have at that facility, so it's worth getting a second or even third opinion. You can also browse trials yourself here or ask for help from this agency.
I've had an unusual number of side effects from the trial so far, but while they've been inconvenient, they haven't been serious. Overall, the quality of life on the trial is much better than with chemo. As I said, response rates are higher on combination trials--sometimes as much as twice as high--so IMO it's definitely worth a few appointments to see if you'd qualify for one. I'd be glad to connect you to Dr. Balmanoukian if you'd like to see her. Other good sources for a second opinion--hospitals with the most cutting edge trials--in LA would be Cedars Sinai (with which The Angeles Clinic is affiliated) and USC's Keck Cancer Center.
Let me know if I can help!
"You West Coast girls are hep, I really dig those styles you wear". I've been on immunotherapy for Melanoma on the right side of my head since 6-19-17. This is totally unrelated to my former stage 4 tonsil cancer from 9 years ago. Had 4 infusions of Keytruda this Summer, and came time for PET Scan and the results were that the tumor had doubled in size. Twas taken off Keytruda, and had my 1st infusion last week of Opdivo along with Yervoy. This is suppose to be more toxic, but no side effects have shown up yet. Hope it knocks this tumor out for good.
Larry
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Keytruda for Lung Cancer
My sister has been on Keytruda (one dose every 3 weeks) since December 2016 for stage IV lung cancer and mets to the kidney. Her response has been great to date. Docs are saying that the only things showing on her scans now are scar tissue. No signs of cancer. Keytruda is the only treatment she has had. No chemo, radiation, nor surgery.
Her only side effects have been a bit of tiredness and a problem with her thyroid.
I know my sister's cancer is not the same as your wife's but just thought I'd respond about someone's experience with immunotherapy.
Thoughts and prayers to you and your wife.
Jan
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Thank you for your helpCivilMatt said:welcome
PolarDini,
Welcome to the H&N forum, I am so truly sorry that you are here.
Two members come to mind and you may want to send them a Private Message to see if they can shed any light on this. I would PM laralyn or phrannie51, they both have experience which may help.
Good luck.
Matt
I'll get in touch with them very soon.
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Thank you for sharing your experienceCajunEagle said:Well now.....
"You West Coast girls are hep, I really dig those styles you wear". I've been on immunotherapy for Melanoma on the right side of my head since 6-19-17. This is totally unrelated to my former stage 4 tonsil cancer from 9 years ago. Had 4 infusions of Keytruda this Summer, and came time for PET Scan and the results were that the tumor had doubled in size. Twas taken off Keytruda, and had my 1st infusion last week of Opdivo along with Yervoy. This is suppose to be more toxic, but no side effects have shown up yet. Hope it knocks this tumor out for good.
Larry
I'm sorry to hear that Keytruda couldn't help you. I hope the combination gives a good result. Today we'll learn about the drug our medical oncologist decides to use on my wife. All I know is that there is only a 20% chance any immunotherapy drug would work but when it works it shows great results quickly. We got to stay positive and believe in our luck.
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Thank youDanceSkater said:Keytruda for Lung Cancer
My sister has been on Keytruda (one dose every 3 weeks) since December 2016 for stage IV lung cancer and mets to the kidney. Her response has been great to date. Docs are saying that the only things showing on her scans now are scar tissue. No signs of cancer. Keytruda is the only treatment she has had. No chemo, radiation, nor surgery.
Her only side effects have been a bit of tiredness and a problem with her thyroid.
I know my sister's cancer is not the same as your wife's but just thought I'd respond about someone's experience with immunotherapy.
Thoughts and prayers to you and your wife.
Jan
We saw our medical oncologist yesterday and she started the immunotherapy infusions right away. Its a combination of Opdivo and Yervoy. I hope it shows some good result soon. I don't know how these doctors decide to use one drug over the other.
I thought immunotherapy is given after having no success with surgery, radiation, and chemo.
I hope your sister continues to show improvement.
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Hi PolarDini,
I hope she will see great improvement soon.
My friend, who was diagnosed with lung cancer about a year and half ago, had Opdivo till spring this year, after chemo. She had excellent response, but Opdivio was stopped because of adverse effects like mouth rashes and skin lesions. After a surgical removal of one skin lesion recently, she is doing well.
As a next arm of treatment for your wife, I would suggest to have a discussion with your onco/clinical trial researcher about possibility of targeted therapy. Depending on her genetic status, multiple FDA approved drugs are available to target mutations such as in VEGF and EGFR.0 -
Thank you for your helpLaralyn said:Some info on immunotherapy
Hi, PolarDini!
I had SCC HPV+ in my left tonsil and soft palate in 2012, and then in my right lung in 2015. I had chemo-radiation both times, cisplatin the first time then carboplatin the second. The cancer came back in mid-2016. I was at UCLA and offered a trial of a new drug that worked similar to Opdivo and Keytruda. I did some research and discovered that combination immunotherapy trials often have higher response rates than a single agent. They didn't offer that trial at UCLA so I switched to The Angeles Clinic.
I got good care at UCLA but I really LOVE my oncologist at The Angeles Clinic, Dr. Ani Balmanoukian. I'm in a clinical trial that combines Opdivo with a second agent called epacadostat. I had a complete response and have been cancer-free for almost a year now. That's a rare result but there are other folks on the trial whose cancer has shrunk or remained stable. UCLA (or any medical facility) can only offer trials they have at that facility, so it's worth getting a second or even third opinion. You can also browse trials yourself here or ask for help from this agency.
I've had an unusual number of side effects from the trial so far, but while they've been inconvenient, they haven't been serious. Overall, the quality of life on the trial is much better than with chemo. As I said, response rates are higher on combination trials--sometimes as much as twice as high--so IMO it's definitely worth a few appointments to see if you'd qualify for one. I'd be glad to connect you to Dr. Balmanoukian if you'd like to see her. Other good sources for a second opinion--hospitals with the most cutting edge trials--in LA would be Cedars Sinai (with which The Angeles Clinic is affiliated) and USC's Keck Cancer Center.
Let me know if I can help!
On our Wednesday visit to the medical oncologist, we were offered a combination of immunotherapy drugs, opdivo and yervoy, and we decided to start on it right away. The problem is that since that one TPF chemo session my wife is having some extreme side effects and our medical oncologist has been failing to pay attention to those. Now the situation became so worse that I had to take my wife to the ER yesterday. She is having EXTREME swelling in her face, low hemoglobin, and hypothyroid.
Based on her current condition, it will be very difficult to take her anywhere for a consult or second opinion. We feel that the treatment is okay at UCLA but the communication and positive attitude are missing. Also, the issues other than cancer are not properly addressed and they have become life-threatening issues now. I have asked the intern at UCLA, who came to check on my wife today to connect us with some other medical oncologist at UCLA. Is it possible to get a second opinion without my wife physically going to the doctor's office? Her cancer seems to be pretty aggressive and non-stop, we are not able to make proper decisions.
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I just saw your post PolarDini....
I rediagnosed for the third time last April with mestatic throat cancer....this time I had nodules in my lungs light up, as well as a lymph node in my chest, and a tumor in my neck. In my case, it's the ENT who's the Debbie Downer, my oncologist is wonderful! I started Keytruda at the end of June, and my last scan showed that my lungs were stable, and the tumor in my neck is slowly dying off. I haven't had any side effects at all so far....I'm hoping the same for your wife.
p
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Thanks for sharing your experiencephrannie51 said:I just saw your post PolarDini....
I rediagnosed for the third time last April with mestatic throat cancer....this time I had nodules in my lungs light up, as well as a lymph node in my chest, and a tumor in my neck. In my case, it's the ENT who's the Debbie Downer, my oncologist is wonderful! I started Keytruda at the end of June, and my last scan showed that my lungs were stable, and the tumor in my neck is slowly dying off. I haven't had any side effects at all so far....I'm hoping the same for your wife.
p
Our medical oncologist started my wife on Opdivo and yervoy. I hope it shows some good result soon. For now, she is struggling with extreme facial swelling and has been admitted to the hospital to figure out the cause. I wonder why my wife was not given Keytruda first.
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Targeted TherapyMyJourneywithCancer said:Hi PolarDini,
I hope she will see great improvement soon.
My friend, who was diagnosed with lung cancer about a year and half ago, had Opdivo till spring this year, after chemo. She had excellent response, but Opdivio was stopped because of adverse effects like mouth rashes and skin lesions. After a surgical removal of one skin lesion recently, she is doing well.
As a next arm of treatment for your wife, I would suggest to have a discussion with your onco/clinical trial researcher about possibility of targeted therapy. Depending on her genetic status, multiple FDA approved drugs are available to target mutations such as in VEGF and EGFR.I think if immunotherapy doesn't work we will try the targeted therapy. Our medical oncologist ordered a generic test and the result shows negative for mutation. Our main focus right now is to find out the cause for facial swelling and control it somehow. Thank you for the suggestion.
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