I have ocular melanoma, brain tumors....wish I would have had this doctor. I still have no idea what is happening to me. Extremely limited on finding a doctor that even knows anything about my type of cancer. It has been a long lonely and frustrating 4 years. I learned more in this video than I have ever heard from the doctors at Masonic cancer center. Wish I could have had a doctor like this.
Hi Cindy, I'm sorry you've not felt safe with your oncologist. Many cancers are rare so there isn't much data to steer the direction of treatment. Some oncologists are excellent practitioners even artful in how they make decisions about the management of a rare cancer but lack the ability or will to communicate with their patients. It could be that your onc fits into that category. Our faculty oncologists are excellent communicators, highly skilled in specific cancers, and want their patients to be a working part of the cancer management. Who wouldn't want them on their team? :) Since busy medical oncologist can't know every new development in every type of cancer they treat they are wise to listen to their patients' input. After all, the patient is the one who most wants the best managment outcomes and may have found info that is worth bringing to the table. But it sounds like you'd need to be the one to foster that part of the relationship. This is such an important topic and is the reason Grace exists. It's no longer ok for a doctor to tell a patient to stay away from the internet. Please drop in to our forums for more discussion on the topic at cancergrace.org/node/add/forum Best of luck Janine forum moderator
I had an operation for Squamous cell carcinoma on May 1st, 2018. After recovering from the surgery, I went for radiation. Later the MRI and CT scan showed that the radiation was not effective enough. I did not want to go through chemo because I have seen the effects on others and did not think that I would survive that treatment. So I chose Keytruda Immunotherapy treatments. I have had four treatments so far and the only side effects so fat have been a bad headache and a rash on my arm which Tylenol for the headache and A & D ointment on my arm fixed those problems. I have been feeling better and will be getting a MRI this week to see the progress. So far, so good.
I'm not aware of any data that suggests someone would experience progression because they eat carbs. Often people with cancer have poor appetite because of treatments or the cancer itself and consuming anything is better than nothing. However it is always healthier to limit carbs in your diet no matter your health. Most anyone would feel better if their diet were rich in fruit and veg and low fat protein and low in carbs especially simple carbs. An example of this is high calorie, protein and vitiman shakes that many people find is the only thing they can consume during treatment. My husband being one I don't think would have survived without the very sugar rich protein shake.
Thank you. Now I need to decide if I am going to restart Keytruda or not. There were some isolated cancer cells found in 3 of the 9 lymph nodes that were removed during surgery, so the oncologist recommends finishing the 17 cycles (we stopped after 5 when I had the adrenal crisis). I also had autoimmune flares of joint pain and Hidradenitis. So I am Concerned, but want the cancer to not come back.
When there are difficult decisions to be made, it's good to have another head in the game. This article is one of my fav all time grace articles. It discusses the who, what, when where, and why of 2nd opinions. They're never a bad idea and it sounds like you need a better understanding of the situation. cancergrace.org/post/insiders-guide-second-opinion Take care, Janine
I was prepared for all of the side effects of chemo, and I remember being told there were not commonly any side effects of immunotherapy. Well, Keytruda shut down my HPA axis and I ended up with an ambulance ride and a 4-day stay in the hospital in adrenal crisis (my cortisol was .8). I now am told I am steroid-dependent for the rest of my life. I’ve gained 30 lbs in 2 months on hydrocortisone. I probably would have taken the trade of adrenal insufficiency over triple negative breast cancer anyway, but I was not prepared and thought the symptoms (extreme fatigue, sleeping 18 hours a day, dizziness, extreme weakness, shortness of breath, stomach pain) were just from the chemo (AC).
Hey ARefinedMe, I am so sorry this has happened. For anyone else reading this you obviously want all the information so you can make decisions and ARefinedMe's experience is an unfortunate example of why it's important to check and double check resources yourself. You never know when your onc team is having an off day, or just isn't interested in how much you know. Refined, whether knowing the possible side effects could have helped catch this earlier and changed outcomes or changed your decision to take keytuda isn't isn't an excuse for your care team not to share or know side effect information. Steroids are joke to have to take forever. Again, I'm sorry for what you go through and hope you have or can learn to live and enjoy life with this new normal.
I have taken several doses of Keytruda. Since about the 3rd dose I have been having severe muscle cramping in my entire body. My cancer doctor says it can't cause cramping, my regular doctor says yes it can. All blood tests that was done for an explanation for cramping was normal, no explanation. I also have fibromyalgia. Can Keytruda affect Fibromyalgia and cause severe cramping?
I found this @ www.mskcc.org/news/gut-check-what-you-need-know-about-common-side-effect-immunotherapy , "The most common issues that come up are diarrhea and other symptoms of colitis, which is inflammation of the large intestine. This can include stomach cramps and blood or mucus in the stool. Some people may have nausea and vomiting. All of these can lead to weight loss and fatigue. Symptoms can range from mild - one or two extra bowel movements a day - to severe. This is when people develop diarrhea, dehydration, weight loss, and stomach pain that can lead to hospitalization." Since it's not clear what causes fibromyalgia, we can only guess that it might cause or inflate certain side effects. I'm sorry you're having additional symptoms/side effects and thank you for your question. I'm sure others have the same question. Please join us in the Grace forums so our discussions can be found by others in search of experiences and data about immunotherapies, cancergrace.org/member I hope you find relief soon, Janine, forum moderator
Wish all doctors felt like you do about side effects. My mother quit Keytruda after 7 treatments because of the side effects. Terrible pain in her hands, felling like crap and a horrible rash that looked like she was turning in to a crocodile. When reporting to doctors they were like “ Oh well”.
Uug, that's awful. Perhaps your mom will have a lasting benefit from the 7 treatments she's had. We still don't know enough about it but some people seem to have benefit many months after immunotherapies like keytruda have been stopped. Too, nurses, infusion nurses are a great go-to for info like side effects. 2nd opinions or a move for a better fit may also be possible. 30 years ago when there was little to offer wording like that was still unwarranted but the sentiment would have been understandable. Today there are options and it's accepted that doctors take quality of life to be a very important aspect of care. I'm sorry y'all are going through that.
@@CancergraceOrg thank you. I will try your suggestions. I’m glad she stopped because she has no cancer per scans. About 4 years ago she had cancer under her toenail and had her toe amputated. She had another scan this year and something showed up in her calf and was removed. The cancer had clean margins around it. As you can tell I’m not very knowledgeable when it comes to medical issues but this video was very helpful. Thank you
I understand, I came into the cancer world with as little knowledge as one can have. In 09 GRACE was lucky to have oncologists answering questions directly. As you can imagine the forums became a mecca for learners needing info quick. I can still ask our faculty when needed but lots of things become old hand while others move much faster than I can keep up with. TMI? :) I don't know what type of cancer your mom had but it does sound like as long as she gets regular scans she should be fine...not to mention everything that goes into active treatment. Below I've linked an excellent primer on 2nd opinions, even if the 2nd is far from home it will give a better understanding of what's maybe up and prob be able to help find a new onc close to home. And prep for the 2nd op so to have best questions they will be happy to answer them. cancergrace.org/post/insider%E2%80%99s-guide-second-opinion
Thank you all for your support. I just want to say that you are an inspiration. You have your illnesses yet take time to help me so I can help my mom. You are the cream of the crop, you are all beautiful people.
Tracy, that means soo much. My husband is the one who had cancer. It was supposed to be stage IV lung cancer but when he took a treatment break it never progressed. That was 11 years ago. The doctors on GRACE and all over social media teaching patients and caregivers like us and advocating for patient advocates have restored my upmost respect for the profession. Thanks, Janine keep us posted.
I'm not aware of why you're suggesting that altering glucose alters cancer growth. But it is understood that eating a healthy diet is always the best diet and giving your digestive system a chance to rest for 8 hours straight is probably the best practice whether you have cancer or not. You should keep in mind that sometimes the best diet for someone with cancer is to eat several small meals and/or whenever and whatever their appetite allows.
Hi Eleanor, I'm sorry you're in this situation. You probably know by now that anxiety is typical when new things arise in your cancer care. That includes starting a new treatment. The good news is this regimen has shown to improve efficacy quite a bit which may help adapt to any new side effects you may or may not get. Stay in contact with your cancer center team. Let your onc know of any new or worsening symptoms. Your chemo nurses are extra knowledgeable about side effects and how to manage them...they work with people all day getting theses treatments and have heard all the things that people do the mitigate side effects. And you can always stop one of the treatments or take a break. I hope you do very well.
I would love to hear how you are getting on with the treatment. Here in UK, Keytruda plus Lenvima has only been approved for my advanced uterine cancer since May this year. My oncologists are still waiting for me to get worse before proceeding with that immunotherapy. I had chemo last summer and hate to think how I would have coped with both sets of side effects.
I also developed a problem on Opdivo, at 5 months. Oncologist refused to continue. Was treated by Opthalmologists who had treated another patient in my position. They believed, as with the other patient, they could control the situation with topical and injectible steriods. My oncologist would not agree to continue fearing I would go blind. I did loose a slight amount of accuity before being treated. I was told this is not "common" but defitinately a possiblity. My next PET/CT scan is due next week and I am hopeful the treatment I did receive has stopped the progression of the Melanoma.
@@donnashoop5017 hi how is your health now donna even i have done with one dose of immuno thearapy and i feel like i am getting blurr with my eye sight.... if imunothearapy didnt work on you what your doctor told to do then.. chemo again??
@@tabrezshaikh7874 You need to tell your oncologist immediately. You need to see an excellent ophthalmologist ASAP. It is a possible side effect of Opdivo drug for sure. I took it for 5.5 months and then had an adverse effect on my vision. I've never taken traditional chemo. Opdivo is also suspected of causing me to develop Sarcoidosis in my lungs. Regardless, I continue on a PET CT scan routine since then. The oncologist believes I am currently in remission. I am one of six first cousins on my mother's side that have been diagnosed and living with Melanoma. Therefore, I am vigilant about my care. My personal faith in God through Jesus Christ sustains me. I pray that you find the help you need!
Auburnman HUNH; Please elaborate on your comment, I had 5 Chemo treatments, combined with 15 radiation treatments.After I had the 5th treatment of chemo, I wound up in hospital for 5 days. I am now on Imfinzi Immunotherapy. (Have had 13 treatments so far, for NSCC right lung cancer.) THe only thing I'm noticing is, loss of appetite, and a general queazy feeing. The thought of food, kinda makes me feel ill. Would welcome any feedback on this.
OMG Creations I have stopped all treatments. I would rather feel decent, than spending my remaining time feeling sick, nauseous and generally bad.. Right now the only problem is still lack of appetite, and still easily fatigued. I bike ride every morning. My oncologist told me in January that my cancer has “stabilized “. I don’t place a lot of confidence in that, as that is probably just a temporary reprieve. Hopefully your dad will get through this, as everyone reacts differently. Where is he being treated? Mine, Florida Cancer Specialists. (Naples)
I pray Lord that You would strenghten all those who suffer ...give them special grace for their valleys !! Amen
Thank you for your Prayers.
I have ocular melanoma, brain tumors....wish I would have had this doctor. I still have no idea what is happening to me. Extremely limited on finding a doctor that even knows anything about my type of cancer. It has been a long lonely and frustrating 4 years. I learned more in this video than I have ever heard from the doctors at Masonic cancer center. Wish I could have had a doctor like this.
Hi Cindy, I'm sorry you've not felt safe with your oncologist. Many cancers are rare so there isn't much data to steer the direction of treatment. Some oncologists are excellent practitioners even artful in how they make decisions about the management of a rare cancer but lack the ability or will to communicate with their patients. It could be that your onc fits into that category. Our faculty oncologists are excellent communicators, highly skilled in specific cancers, and want their patients to be a working part of the cancer management. Who wouldn't want them on their team? :) Since busy medical oncologist can't know every new development in every type of cancer they treat they are wise to listen to their patients' input. After all, the patient is the one who most wants the best managment outcomes and may have found info that is worth bringing to the table. But it sounds like you'd need to be the one to foster that part of the relationship. This is such an important topic and is the reason Grace exists. It's no longer ok for a doctor to tell a patient to stay away from the internet. Please drop in to our forums for more discussion on the topic at cancergrace.org/node/add/forum
Best of luck
Janine forum moderator
I had an operation for Squamous cell carcinoma on May 1st, 2018. After recovering from the surgery, I went for radiation. Later the MRI and CT scan showed that the radiation was not effective enough. I did not want to go through chemo because I have seen the effects on others and did not think that I would survive that treatment. So I chose Keytruda Immunotherapy treatments. I have had four treatments so far and the only side effects so fat have been a bad headache and a rash on my arm which Tylenol for the headache and A & D ointment on my arm fixed those problems. I have been feeling better and will be getting a MRI this week to see the progress. So far, so good.
Glad to hear it, Rich. Good Luck to ya bro.
How RU doing now. I pray for full recovery
2-14-2020 Recieving Tecentriq and chemo now and keeping fingers crossed and praying. Please God, let me live.
All my prayers for you🙏 My Dad is on chemo and tecentriq for SCLC as well. His chemo is over though, so now he is on maintenance immunotherapy.
How’s it going for you now?
Continue believing
Stay away from carbs and sugar
I'm not aware of any data that suggests someone would experience progression because they eat carbs. Often people with cancer have poor appetite because of treatments or the cancer itself and consuming anything is better than nothing. However it is always healthier to limit carbs in your diet no matter your health. Most anyone would feel better if their diet were rich in fruit and veg and low fat protein and low in carbs especially simple carbs. An example of this is high calorie, protein and vitiman shakes that many people find is the only thing they can consume during treatment. My husband being one I don't think would have survived without the very sugar rich protein shake.
Thank you. Now I need to decide if I am going to restart Keytruda or not. There were some isolated cancer cells found in 3 of the 9 lymph nodes that were removed during surgery, so the oncologist recommends finishing the 17 cycles (we stopped after 5 when I had the adrenal crisis). I also had autoimmune flares of joint pain and Hidradenitis. So I am
Concerned, but want the cancer to not come back.
When there are difficult decisions to be made, it's good to have another head in the game. This article is one of my fav all time grace articles. It discusses the who, what, when where, and why of 2nd opinions. They're never a bad idea and it sounds like you need a better understanding of the situation. cancergrace.org/post/insiders-guide-second-opinion
Take care,
Janine
@@CancergraceOrg thank you so much.
Is the immunotherapy really works on ovarian cancer, two times relapsed,metastasis, abdominal obstruction, patients
I was prepared for all of the side effects of chemo, and I remember being told there were not commonly any side effects of immunotherapy. Well, Keytruda shut down my HPA axis and I ended up with an ambulance ride and a 4-day stay in the hospital in adrenal crisis (my cortisol was .8). I now am told I am steroid-dependent for the rest of my life. I’ve gained 30 lbs in 2 months on hydrocortisone. I probably would have taken the trade of adrenal insufficiency over triple negative breast cancer anyway, but I was not prepared and thought the symptoms (extreme fatigue, sleeping 18 hours a day, dizziness, extreme weakness, shortness of breath, stomach pain) were just from the chemo (AC).
Hey ARefinedMe, I am so sorry this has happened. For anyone else reading this you obviously want all the information so you can make decisions and ARefinedMe's experience is an unfortunate example of why it's important to check and double check resources yourself. You never know when your onc team is having an off day, or just isn't interested in how much you know.
Refined, whether knowing the possible side effects could have helped catch this earlier and changed outcomes or changed your decision to take keytuda isn't isn't an excuse for your care team not to share or know side effect information. Steroids are joke to have to take forever. Again, I'm sorry for what you go through and hope you have or can learn to live and enjoy life with this new normal.
I have taken several doses of Keytruda. Since about the 3rd dose I have been having severe muscle cramping in my entire body. My cancer doctor says it can't cause cramping, my regular doctor says yes it can. All blood tests that was done for an explanation for cramping was normal, no explanation. I also have fibromyalgia. Can Keytruda affect Fibromyalgia and cause severe cramping?
I found this @ www.mskcc.org/news/gut-check-what-you-need-know-about-common-side-effect-immunotherapy , "The most common issues that come up are diarrhea and other symptoms of colitis, which is inflammation of the large intestine. This can include stomach cramps and blood or mucus in the stool. Some people may have nausea and vomiting. All of these can lead to weight loss and fatigue. Symptoms can range from mild - one or two extra bowel movements a day - to severe. This is when people develop diarrhea, dehydration, weight loss, and stomach pain that can lead to hospitalization."
Since it's not clear what causes fibromyalgia, we can only guess that it might cause or inflate certain side effects.
I'm sorry you're having additional symptoms/side effects and thank you for your question. I'm sure others have the same question. Please join us in the Grace forums so our discussions can be found by others in search of experiences and data about immunotherapies, cancergrace.org/member
I hope you find relief soon,
Janine, forum moderator
Extreme upper abdominal pain after 2nd round of Keytruda. Non-stop for the past month.
fanorama1, I hope you were able to mitigate the abdominal pain. Good luck,
@@CancergraceOrg It ended up being a tumor in my spine that had fractured a vertebrae!
@fanorama1 oh, I'm so sorry. Were you able to stabilize it?
Wish all doctors felt like you do about side effects. My mother quit Keytruda after 7 treatments because of the side effects. Terrible pain in her hands, felling like crap and a horrible rash that looked like she was turning in to a crocodile. When reporting to doctors they were like “ Oh well”.
Uug, that's awful. Perhaps your mom will have a lasting benefit from the 7 treatments she's had. We still don't know enough about it but some people seem to have benefit many months after immunotherapies like keytruda have been stopped. Too, nurses, infusion nurses are a great go-to for info like side effects. 2nd opinions or a move for a better fit may also be possible.
30 years ago when there was little to offer wording like that was still unwarranted but the sentiment would have been understandable. Today there are options and it's accepted that doctors take quality of life to be a very important aspect of care. I'm sorry y'all are going through that.
@@CancergraceOrg thank you. I will try your suggestions. I’m glad she stopped because she has no cancer per scans. About 4 years ago she had cancer under her toenail and had her toe amputated. She had another scan this year and something showed up in her calf and was removed. The cancer had clean margins around it. As you can tell I’m not very knowledgeable when it comes to medical issues but this video was very helpful. Thank you
I understand, I came into the cancer world with as little knowledge as one can have. In 09 GRACE was lucky to have oncologists answering questions directly. As you can imagine the forums became a mecca for learners needing info quick. I can still ask our faculty when needed but lots of things become old hand while others move much faster than I can keep up with. TMI? :)
I don't know what type of cancer your mom had but it does sound like as long as she gets regular scans she should be fine...not to mention everything that goes into active treatment. Below I've linked an excellent primer on 2nd opinions, even if the 2nd is far from home it will give a better understanding of what's maybe up and prob be able to help find a new onc close to home. And prep for the 2nd op so to have best questions they will be happy to answer them. cancergrace.org/post/insider%E2%80%99s-guide-second-opinion
Thank you all for your support. I just want to say that you are an inspiration. You have your illnesses yet take time to help me so I can help my mom. You are the cream of the crop, you are all beautiful people.
Tracy, that means soo much. My husband is the one who had cancer. It was supposed to be stage IV lung cancer but when he took a treatment break it never progressed. That was 11 years ago. The doctors on GRACE and all over social media teaching patients and caregivers like us and advocating for patient advocates have restored my upmost respect for the profession. Thanks, Janine
keep us posted.
Treat your patients using intermittent fasting to after the glucose and glutamine cancer needs
I'm not aware of why you're suggesting that altering glucose alters cancer growth. But it is understood that eating a healthy diet is always the best diet and giving your digestive system a chance to rest for 8 hours straight is probably the best practice whether you have cancer or not. You should keep in mind that sometimes the best diet for someone with cancer is to eat several small meals and/or whenever and whatever their appetite allows.
I am expecting to start Keytruda next week in combination with my chemo (for stage 3 uterine cancer) and I am so scared.
Hi Eleanor, I'm sorry you're in this situation. You probably know by now that anxiety is typical when new things arise in your cancer care. That includes starting a new treatment. The good news is this regimen has shown to improve efficacy quite a bit which may help adapt to any new side effects you may or may not get. Stay in contact with your cancer center team. Let your onc know of any new or worsening symptoms. Your chemo nurses are extra knowledgeable about side effects and how to manage them...they work with people all day getting theses treatments and have heard all the things that people do the mitigate side effects. And you can always stop one of the treatments or take a break. I hope you do very well.
@@CancergraceOrg Thank you for these words of advice and encouragement.
I would love to hear how you are getting on with the treatment. Here in UK, Keytruda plus Lenvima has only been approved for my advanced uterine cancer since May this year. My oncologists are still waiting for me to get worse before proceeding with that immunotherapy. I had chemo last summer and hate to think how I would have coped with both sets of side effects.
@@melaniepitt4295 knock wood I’m doing OK
My wife took Nivolumab and she has problems in sight, is this common?
I also developed a problem on Opdivo, at 5 months. Oncologist refused to continue. Was treated by Opthalmologists who had treated another patient in my position. They believed, as with the other patient, they could control the situation with topical and injectible steriods. My oncologist would not agree to continue fearing I would go blind. I did loose a slight amount of accuity before being treated. I was told this is not "common" but defitinately a possiblity. My next PET/CT scan is due next week and I am hopeful the treatment I did receive has stopped the progression of the Melanoma.
@@donnashoop5017 hi how is your health now donna even i have done with one dose of immuno thearapy and i feel like i am getting blurr with my eye sight.... if imunothearapy didnt work on you what your doctor told to do then.. chemo again??
@@tabrezshaikh7874 You need to tell your oncologist immediately. You need to see an excellent ophthalmologist ASAP. It is a possible side effect of Opdivo drug for sure. I took it for 5.5 months and then had an adverse effect on my vision. I've never taken traditional chemo. Opdivo is also suspected of causing me to develop Sarcoidosis in my lungs. Regardless, I continue on a PET CT scan routine since then. The oncologist believes I am currently in remission. I am one of six first cousins on my mother's side that have been diagnosed and living with Melanoma. Therefore, I am vigilant about my care. My personal faith in God through Jesus Christ sustains me. I pray that you find the help you need!
Immuno is alot worse than chemo
Auburnman HUNH;
Please elaborate on your comment,
I had 5 Chemo treatments, combined with 15 radiation treatments.After I had the 5th treatment of chemo, I wound up in hospital for 5 days. I am now on Imfinzi Immunotherapy.
(Have had 13 treatments so far, for NSCC right lung cancer.)
THe only thing I'm noticing is, loss of appetite, and a general queazy feeing. The thought of food, kinda makes me feel ill.
Would welcome any feedback on this.
Ohio Biker; What type of cancer?
Ohio Biker : Keep the faith. Good luck.
no its not
OMG Creations I have stopped all treatments. I would rather feel decent, than spending my remaining time feeling sick, nauseous and generally bad.. Right now the only problem is still lack of appetite, and still easily fatigued. I bike ride every morning. My oncologist told me in January that my cancer has “stabilized “.
I don’t place a lot of confidence in that, as that is probably just a temporary reprieve. Hopefully your dad will get through this, as everyone reacts differently. Where is he being treated? Mine, Florida Cancer Specialists. (Naples)