› Forums › General Melanoma Community › Nivo/Ipi and now Chemo (Treatment update)
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Francyn.
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- September 26, 2016 at 7:30 pm
Hello everyone,I have been posting here about the whole treatment with my mom and we have a new update. I was wondering if anyone had someone similar or any insight to any of this…
She started her immunotherapy last week. That night was horrible, she was very sick, couldn’t stand up, had a slight fever, diarrhea etc…this slightly continued into the next day when her ankle swelled up as well (we were checked out and it isn’t a blood clot). About 24 hrs (close to this…) the tumor in her stomach basically looked as if it had doubled in size. She had many pains and found it hard to walk. About 3 days after treatment, the other side of her stomach where there was no tumor swelled up as well. She has been in/out of pain, both on and off high stength pain medicine to help her sleep. She has a lot of fatigue (which I am assuming is from the treatment last week)
After meeting with our Dr. He mentioned he wanted to do chemotherapy (Taxol and some other one that starts with a C) because we don’t have more time to wait with the location of tumor (it’s basically crushing her insides). We start chemo on Thursday. They went over side effects such as hair loss, fatigue etc…with the hope of shrinking the tumor faster since the Dr had mentioned we cant wait the 12 weeks for immunotherapy to respond.
Does anyone have any insight or experience on this? We keep feeling like we are getting worse and worse news at this point. Ever since she started the immunotherapy she has been sicker/in pain more than ever, even compared to the 1.5 months we were waiting to start all of these treatments.
I don’t know much about chemotherapy since I didn’t expect this to be thrown in with the mix. Any thoughts would be helpful. From what I have Googled Taxol doesn’t sound very good, but again I don’t fully understand what I am looking for.
I also want to say thank you to everyone who has been following/giving input for this case. Since it is mainly me taking care of her everything has been very hard and any help/prayers are appreciated.
Melissa
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- September 26, 2016 at 9:22 pm
Hi Melissa,
I don't have any experience with chemo, but I know that it's not uncommon for tumors to "grow" while on immunotherapy. It's called pseudo progression and if you search for pseudo progression, you'll find lots of info here on it. Essentially it's when your immune system is attacking the tumors it causes them to increase in size and this is usually a good thing.
Also, I don't know how long your mom has been on immuniotherapy, but it can take awhile. If your mom is BRAF positive, then sometimes BRAF drugs are used to shrink the tumors. Unfortunately this usually isn't a long term solution, but it might be a good short term plan.
Sounds like you need a melanoma specialist.
Wishing you peace!
Julie
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- September 26, 2016 at 9:22 pm
Hi Melissa,
I don't have any experience with chemo, but I know that it's not uncommon for tumors to "grow" while on immunotherapy. It's called pseudo progression and if you search for pseudo progression, you'll find lots of info here on it. Essentially it's when your immune system is attacking the tumors it causes them to increase in size and this is usually a good thing.
Also, I don't know how long your mom has been on immuniotherapy, but it can take awhile. If your mom is BRAF positive, then sometimes BRAF drugs are used to shrink the tumors. Unfortunately this usually isn't a long term solution, but it might be a good short term plan.
Sounds like you need a melanoma specialist.
Wishing you peace!
Julie
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- September 29, 2016 at 12:47 am
My mom actually just started immunotherapy last week. Right after the first infusion, her stomach (where the tumor is) doubled in size (or so it seemed), her ankle on the one foot swelled up and shes been having extreme fatigue as well as random little rashes and itches that appear and are very severe. So far none of the itches have stayed permanent. We just aren't sure if the chemo is the right course right now, especially sicne we saw the Dr. only a few days after the first infusion and unfortuately it was on one of her bad days (she has some good some bad…)…We are currently seeing a melanoma specialist and that was the conclusion that was come to as soon as they saw her on the 3rd day after first infusion. It was mentioned it may get bigger before it gets smaller, but we didn't expect this!
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- September 29, 2016 at 12:47 am
My mom actually just started immunotherapy last week. Right after the first infusion, her stomach (where the tumor is) doubled in size (or so it seemed), her ankle on the one foot swelled up and shes been having extreme fatigue as well as random little rashes and itches that appear and are very severe. So far none of the itches have stayed permanent. We just aren't sure if the chemo is the right course right now, especially sicne we saw the Dr. only a few days after the first infusion and unfortuately it was on one of her bad days (she has some good some bad…)…We are currently seeing a melanoma specialist and that was the conclusion that was come to as soon as they saw her on the 3rd day after first infusion. It was mentioned it may get bigger before it gets smaller, but we didn't expect this!
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- September 29, 2016 at 12:47 am
My mom actually just started immunotherapy last week. Right after the first infusion, her stomach (where the tumor is) doubled in size (or so it seemed), her ankle on the one foot swelled up and shes been having extreme fatigue as well as random little rashes and itches that appear and are very severe. So far none of the itches have stayed permanent. We just aren't sure if the chemo is the right course right now, especially sicne we saw the Dr. only a few days after the first infusion and unfortuately it was on one of her bad days (she has some good some bad…)…We are currently seeing a melanoma specialist and that was the conclusion that was come to as soon as they saw her on the 3rd day after first infusion. It was mentioned it may get bigger before it gets smaller, but we didn't expect this!
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- September 26, 2016 at 9:22 pm
Hi Melissa,
I don't have any experience with chemo, but I know that it's not uncommon for tumors to "grow" while on immunotherapy. It's called pseudo progression and if you search for pseudo progression, you'll find lots of info here on it. Essentially it's when your immune system is attacking the tumors it causes them to increase in size and this is usually a good thing.
Also, I don't know how long your mom has been on immuniotherapy, but it can take awhile. If your mom is BRAF positive, then sometimes BRAF drugs are used to shrink the tumors. Unfortunately this usually isn't a long term solution, but it might be a good short term plan.
Sounds like you need a melanoma specialist.
Wishing you peace!
Julie
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- September 27, 2016 at 12:55 am
Hi Melissa,
Sounds like a bumpy ride.
The chemo regime is probably carbo taxol ..which can work quickly at shrinking things. Don't know anything much about it..other than also used for ovarian cancer and also goes under other names.
The combo treatments can complement each other in that the chemo regime can find and knock out rapid!y dividing cells, and the damage from this makes the cells more visible as a target for the immunotherapy.
It may seem like things have got worse for your Mum since starting treatment but things would not get any better without it. Hang on in there, as some of the reactions you report probably mean the drugs are doing their job.
With the best off woshrd to you both
Deb
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- September 27, 2016 at 12:55 am
Hi Melissa,
Sounds like a bumpy ride.
The chemo regime is probably carbo taxol ..which can work quickly at shrinking things. Don't know anything much about it..other than also used for ovarian cancer and also goes under other names.
The combo treatments can complement each other in that the chemo regime can find and knock out rapid!y dividing cells, and the damage from this makes the cells more visible as a target for the immunotherapy.
It may seem like things have got worse for your Mum since starting treatment but things would not get any better without it. Hang on in there, as some of the reactions you report probably mean the drugs are doing their job.
With the best off woshrd to you both
Deb
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- September 27, 2016 at 12:55 am
Hi Melissa,
Sounds like a bumpy ride.
The chemo regime is probably carbo taxol ..which can work quickly at shrinking things. Don't know anything much about it..other than also used for ovarian cancer and also goes under other names.
The combo treatments can complement each other in that the chemo regime can find and knock out rapid!y dividing cells, and the damage from this makes the cells more visible as a target for the immunotherapy.
It may seem like things have got worse for your Mum since starting treatment but things would not get any better without it. Hang on in there, as some of the reactions you report probably mean the drugs are doing their job.
With the best off woshrd to you both
Deb
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- September 29, 2016 at 12:51 am
Thank you Deb. That definitely clears up why the chemo would be used, we are just very unsure if that is the way to go right now as I had written above. We did see the Dr. the 3rd day or something after first infusion and it was also at her worst (she just had a really bad day) and still has extreme fatigue and such, we just don't know if this is the right option so early on with the immunotherapy.
It is interesting that you noted how it makes the cells more visible as a target and such, which is what we want, but my fear is since they mentioned her white blood cell count dropping that she may be getting an infection or such, which to me defeats the purpose of the immunotherapy…I am not really sure at this point. Things have just been taking sharp left turns as we go and we keep praying for a miracle at this point!
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- September 29, 2016 at 12:51 am
Thank you Deb. That definitely clears up why the chemo would be used, we are just very unsure if that is the way to go right now as I had written above. We did see the Dr. the 3rd day or something after first infusion and it was also at her worst (she just had a really bad day) and still has extreme fatigue and such, we just don't know if this is the right option so early on with the immunotherapy.
It is interesting that you noted how it makes the cells more visible as a target and such, which is what we want, but my fear is since they mentioned her white blood cell count dropping that she may be getting an infection or such, which to me defeats the purpose of the immunotherapy…I am not really sure at this point. Things have just been taking sharp left turns as we go and we keep praying for a miracle at this point!
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- September 29, 2016 at 12:51 am
Thank you Deb. That definitely clears up why the chemo would be used, we are just very unsure if that is the way to go right now as I had written above. We did see the Dr. the 3rd day or something after first infusion and it was also at her worst (she just had a really bad day) and still has extreme fatigue and such, we just don't know if this is the right option so early on with the immunotherapy.
It is interesting that you noted how it makes the cells more visible as a target and such, which is what we want, but my fear is since they mentioned her white blood cell count dropping that she may be getting an infection or such, which to me defeats the purpose of the immunotherapy…I am not really sure at this point. Things have just been taking sharp left turns as we go and we keep praying for a miracle at this point!
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- September 27, 2016 at 9:48 pm
Melissa, I did the Chemo in low dose in between ippi/nivo and Pembro. Chemo Nov./Dec. Pembro Jan. to present. I am currently Ned. My tumor grew by a third while on Chemo but exposed tumor in cheek became partially necrotic. Dr. said tumor got pissy from Chemo and Pembro knocked it out. Also had disease in bone and node.
Best of luck to Moms,
Paul
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- September 27, 2016 at 9:48 pm
Melissa, I did the Chemo in low dose in between ippi/nivo and Pembro. Chemo Nov./Dec. Pembro Jan. to present. I am currently Ned. My tumor grew by a third while on Chemo but exposed tumor in cheek became partially necrotic. Dr. said tumor got pissy from Chemo and Pembro knocked it out. Also had disease in bone and node.
Best of luck to Moms,
Paul
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- September 27, 2016 at 9:48 pm
Melissa, I did the Chemo in low dose in between ippi/nivo and Pembro. Chemo Nov./Dec. Pembro Jan. to present. I am currently Ned. My tumor grew by a third while on Chemo but exposed tumor in cheek became partially necrotic. Dr. said tumor got pissy from Chemo and Pembro knocked it out. Also had disease in bone and node.
Best of luck to Moms,
Paul
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- September 29, 2016 at 12:54 am
Hi Paul,
If you don't mind me asking, how big/where was your tumor and why was chemo a decision for shrinking the tumor during the ipi/nivo treatment? I am not familar with the Pembro part since that is not a part of my moms treatment at the moment.
I am only wondering because as I had mentioned above, all this was decided on the 3rd day after my moms infusion when she had a very bad day and was extremely fatigued and such from the ipi/nivo. The tumor she has is grapefruit sized on the ovary so it is pushing on some of the organs inside (similar to being pregnant I guess), but since the treatment she literally blew up like a balloon and has been worse off prior to even starting the treatment.
I appreciate your response. I haven't really seen/heard from anyone who has done the chemo during this treatment so it is interesting to hear what your perspective is.
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- September 29, 2016 at 12:54 am
Hi Paul,
If you don't mind me asking, how big/where was your tumor and why was chemo a decision for shrinking the tumor during the ipi/nivo treatment? I am not familar with the Pembro part since that is not a part of my moms treatment at the moment.
I am only wondering because as I had mentioned above, all this was decided on the 3rd day after my moms infusion when she had a very bad day and was extremely fatigued and such from the ipi/nivo. The tumor she has is grapefruit sized on the ovary so it is pushing on some of the organs inside (similar to being pregnant I guess), but since the treatment she literally blew up like a balloon and has been worse off prior to even starting the treatment.
I appreciate your response. I haven't really seen/heard from anyone who has done the chemo during this treatment so it is interesting to hear what your perspective is.
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- September 29, 2016 at 12:54 am
Hi Paul,
If you don't mind me asking, how big/where was your tumor and why was chemo a decision for shrinking the tumor during the ipi/nivo treatment? I am not familar with the Pembro part since that is not a part of my moms treatment at the moment.
I am only wondering because as I had mentioned above, all this was decided on the 3rd day after my moms infusion when she had a very bad day and was extremely fatigued and such from the ipi/nivo. The tumor she has is grapefruit sized on the ovary so it is pushing on some of the organs inside (similar to being pregnant I guess), but since the treatment she literally blew up like a balloon and has been worse off prior to even starting the treatment.
I appreciate your response. I haven't really seen/heard from anyone who has done the chemo during this treatment so it is interesting to hear what your perspective is.
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- September 29, 2016 at 6:18 pm
Hi Malissa, I started IPPI/NIVO July of 2015. I only made it through 2 infusions and had to stop(MidAugust) due to side effects. I had disease(cheek and jaw area) in bone, soft tissue and node. Size of soft tissue tumor was approx.10 mm. After 1st infusion of the combo soft tissue tumor swelled and became painful. Just before 3rd infusion labs came back Auto Immune Pancreatitis and stopped treatment. However, the tumor had shrunk. After a round of steroids 7 weeks I started Nivo alone(Oct. 2015) and made it through 2 treatments and then had to stop due to Immune Hepatitis. Steroids again 5 weeks. It was about 6 weeks between Nivo and low dose chemo.
I started chemo mid Nov. to the end of Dec. Scans after wards showed Soft tissue tumor had grown(size of golf ball) but exposed tumor in mouth was partially necrotic. The Drs. reason for adding chemo was to piss off the tumor so the Nivo could recognize and attack. Right after chemo. I was going to try Nivo. again but Dr. tried Pembro instead These are basically the same drug (Pembro/Nivo) different companies though. I somehow was able to tolerate the Pembro and noticed shrinking right away. I just had my 14th bag of Pembro and most recent scans are Ned.
Sounds to me that Moms is responding to treatment. Try to get through as many treatments as possible and give it time to work( i know harder said than done when tumor seems to be growing!) I figure hitting this beast with everything out there and hope something sticks is the best way.
Best, Paul
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- September 29, 2016 at 6:18 pm
Hi Malissa, I started IPPI/NIVO July of 2015. I only made it through 2 infusions and had to stop(MidAugust) due to side effects. I had disease(cheek and jaw area) in bone, soft tissue and node. Size of soft tissue tumor was approx.10 mm. After 1st infusion of the combo soft tissue tumor swelled and became painful. Just before 3rd infusion labs came back Auto Immune Pancreatitis and stopped treatment. However, the tumor had shrunk. After a round of steroids 7 weeks I started Nivo alone(Oct. 2015) and made it through 2 treatments and then had to stop due to Immune Hepatitis. Steroids again 5 weeks. It was about 6 weeks between Nivo and low dose chemo.
I started chemo mid Nov. to the end of Dec. Scans after wards showed Soft tissue tumor had grown(size of golf ball) but exposed tumor in mouth was partially necrotic. The Drs. reason for adding chemo was to piss off the tumor so the Nivo could recognize and attack. Right after chemo. I was going to try Nivo. again but Dr. tried Pembro instead These are basically the same drug (Pembro/Nivo) different companies though. I somehow was able to tolerate the Pembro and noticed shrinking right away. I just had my 14th bag of Pembro and most recent scans are Ned.
Sounds to me that Moms is responding to treatment. Try to get through as many treatments as possible and give it time to work( i know harder said than done when tumor seems to be growing!) I figure hitting this beast with everything out there and hope something sticks is the best way.
Best, Paul
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- September 29, 2016 at 6:18 pm
Hi Malissa, I started IPPI/NIVO July of 2015. I only made it through 2 infusions and had to stop(MidAugust) due to side effects. I had disease(cheek and jaw area) in bone, soft tissue and node. Size of soft tissue tumor was approx.10 mm. After 1st infusion of the combo soft tissue tumor swelled and became painful. Just before 3rd infusion labs came back Auto Immune Pancreatitis and stopped treatment. However, the tumor had shrunk. After a round of steroids 7 weeks I started Nivo alone(Oct. 2015) and made it through 2 treatments and then had to stop due to Immune Hepatitis. Steroids again 5 weeks. It was about 6 weeks between Nivo and low dose chemo.
I started chemo mid Nov. to the end of Dec. Scans after wards showed Soft tissue tumor had grown(size of golf ball) but exposed tumor in mouth was partially necrotic. The Drs. reason for adding chemo was to piss off the tumor so the Nivo could recognize and attack. Right after chemo. I was going to try Nivo. again but Dr. tried Pembro instead These are basically the same drug (Pembro/Nivo) different companies though. I somehow was able to tolerate the Pembro and noticed shrinking right away. I just had my 14th bag of Pembro and most recent scans are Ned.
Sounds to me that Moms is responding to treatment. Try to get through as many treatments as possible and give it time to work( i know harder said than done when tumor seems to be growing!) I figure hitting this beast with everything out there and hope something sticks is the best way.
Best, Paul
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- October 8, 2016 at 1:26 am
Melissa,
I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot. I have a football size tumor in my left abdomen and groin but contained in the lymph nodes. I had two rounds of Yervoy three weeks apart and had the typical side effects of nausea and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo and tolerated it well. Three weeks later I had both the Yervoy and Opdivo and went into a toxic state. After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo. The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it. He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture. My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease), or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same.
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- October 8, 2016 at 1:26 am
Melissa,
I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot. I have a football size tumor in my left abdomen and groin but contained in the lymph nodes. I had two rounds of Yervoy three weeks apart and had the typical side effects of nausea and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo and tolerated it well. Three weeks later I had both the Yervoy and Opdivo and went into a toxic state. After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo. The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it. He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture. My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease), or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same.
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- October 8, 2016 at 1:26 am
Melissa,
I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot. I have a football size tumor in my left abdomen and groin but contained in the lymph nodes. I had two rounds of Yervoy three weeks apart and had the typical side effects of nausea and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo and tolerated it well. Three weeks later I had both the Yervoy and Opdivo and went into a toxic state. After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo. The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it. He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture. My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease), or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same.
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