Yervoy

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  • MikeW1958
    MikeW1958 Member Posts: 9
    Lilly2013 said:

    Yervoy side effects

    If you google "yervoy side effects" it will give you a list of potential side effects, good and bad.

    side effects

    i have micromedex drug info app on my cell and i have the full deal from the cancer institute that is monitoriing the trial, they made sure i knew of the possible side effects,  

     

    what i am experiencing, is just what i have posted mostly fatigue and iching, right after the treatment , i have been sick  but not lasting long

  • amike1
    amike1 Member Posts: 2
    MikeW1958 said:

    side effects

    i have micromedex drug info app on my cell and i have the full deal from the cancer institute that is monitoriing the trial, they made sure i knew of the possible side effects,  

     

    what i am experiencing, is just what i have posted mostly fatigue and iching, right after the treatment , i have been sick  but not lasting long

    Yervoy is it working?

    I have went through the entire program with Yervoy. This is my story.

    I had a stage 4 melanoma mold on my back 3.5 years ago. I had surgery to remove the mold. Two months later I found to be "under the knife" to remove lymph nodes under my right arm. I had ct scans done every 6 months for 2 years with know sign of spreading in my body.  March 2012  I was experiencing illness (stomach) thinking that maybe I was experiencing gall bladder issues. I was sent by my doctor to get a scan at the local hospital. They found that my spline and liver had tumors on these orgins. I was sent to UAMS for advice. They decided to put me on Yervoy.

     

    The Yervoy treatment that was recommended was to have 4 treatments , 3 weeks apart.  The following is what I experienced.

    Treatment #1 - I spent the day in the hospital. Blood test, Another CT scan, then the liquid drip of Yervoy. At first I felt good. After a couple of hours I was very cold and shivering. I started having a low grade fever. (101F). The next day I woke up and felt ok. I continued to work and go about my business.

    Treatment #2 - After treatment #2 the side effects started coming in. I had severe rashes on my legs, waistline, and the behind. I was itching like you would not believe. I took some actions that may help you. First, I cut my finger nails down to the skin in order to eliminate the effects of scratching. Second, I used benydril at the maximum level I could use. 3rd. I showered with a soap made out of goats milk. And finally used a lotion called Sarna. I used it right after showering with my skin still moist.

    It seems that the turning point of the itching is when I switched from regular soap to goats milk soap. The Sarna lotion also helped considerably.Rash was gone in two weeks.

    After the second treatment is when I started considerable weakness and weight loss.

    Treatment #3 -  I still felt weak and was not eating well. I went from 220 lbs. to 190 lbs. but I did not have any other side effects to the Yervoy.

    Treatment #4 - Before the final treatment I felt fairly good. I could tell that the treatment was working. My urine went from a dark yellow back to normal color. All pain was gone. About two days after the treatment a side effect of loose stool started. This was happening 5-6 times a day. The hospital did a culture and did a little uncomfortable exploring to see if I had colonites. The doctors could not find anything but put me on Sulfasal-Azine anyway. After 3 weeks my loose stool went away.

    On March 14th (8 weeks after last treatment)I returned to UAMS and had a CT scan and blood test done. The findings were as follows. (1) Went from 190 lbs to 202 lbs.

    (2) The liver and spleen tumors were shrunk considerably. The doctor was very positive. I will be going back in two months to see if the tumors will reduce further.

    I hope with Gods help that this drug will save my life and that this blog will help those that are taking the drug Yervoy.  Stay positive. You will get through it.

     

     

  • MikeW1958
    MikeW1958 Member Posts: 9
    amike1 said:

    Yervoy is it working?

    I have went through the entire program with Yervoy. This is my story.

    I had a stage 4 melanoma mold on my back 3.5 years ago. I had surgery to remove the mold. Two months later I found to be "under the knife" to remove lymph nodes under my right arm. I had ct scans done every 6 months for 2 years with know sign of spreading in my body.  March 2012  I was experiencing illness (stomach) thinking that maybe I was experiencing gall bladder issues. I was sent by my doctor to get a scan at the local hospital. They found that my spline and liver had tumors on these orgins. I was sent to UAMS for advice. They decided to put me on Yervoy.

     

    The Yervoy treatment that was recommended was to have 4 treatments , 3 weeks apart.  The following is what I experienced.

    Treatment #1 - I spent the day in the hospital. Blood test, Another CT scan, then the liquid drip of Yervoy. At first I felt good. After a couple of hours I was very cold and shivering. I started having a low grade fever. (101F). The next day I woke up and felt ok. I continued to work and go about my business.

    Treatment #2 - After treatment #2 the side effects started coming in. I had severe rashes on my legs, waistline, and the behind. I was itching like you would not believe. I took some actions that may help you. First, I cut my finger nails down to the skin in order to eliminate the effects of scratching. Second, I used benydril at the maximum level I could use. 3rd. I showered with a soap made out of goats milk. And finally used a lotion called Sarna. I used it right after showering with my skin still moist.

    It seems that the turning point of the itching is when I switched from regular soap to goats milk soap. The Sarna lotion also helped considerably.Rash was gone in two weeks.

    After the second treatment is when I started considerable weakness and weight loss.

    Treatment #3 -  I still felt weak and was not eating well. I went from 220 lbs. to 190 lbs. but I did not have any other side effects to the Yervoy.

    Treatment #4 - Before the final treatment I felt fairly good. I could tell that the treatment was working. My urine went from a dark yellow back to normal color. All pain was gone. About two days after the treatment a side effect of loose stool started. This was happening 5-6 times a day. The hospital did a culture and did a little uncomfortable exploring to see if I had colonites. The doctors could not find anything but put me on Sulfasal-Azine anyway. After 3 weeks my loose stool went away.

    On March 14th (8 weeks after last treatment)I returned to UAMS and had a CT scan and blood test done. The findings were as follows. (1) Went from 190 lbs to 202 lbs.

    (2) The liver and spleen tumors were shrunk considerably. The doctor was very positive. I will be going back in two months to see if the tumors will reduce further.

    I hope with Gods help that this drug will save my life and that this blog will help those that are taking the drug Yervoy.  Stay positive. You will get through it.

     

     

    yervoy

    good luck with your continueing after treatment, i guess in another 4 months ill learn more about that, i am getting the high dose, 8 of them all together

  • outofwork1
    outofwork1 Member Posts: 1
    amike1 said:

    Yervoy is it working?

    I have went through the entire program with Yervoy. This is my story.

    I had a stage 4 melanoma mold on my back 3.5 years ago. I had surgery to remove the mold. Two months later I found to be "under the knife" to remove lymph nodes under my right arm. I had ct scans done every 6 months for 2 years with know sign of spreading in my body.  March 2012  I was experiencing illness (stomach) thinking that maybe I was experiencing gall bladder issues. I was sent by my doctor to get a scan at the local hospital. They found that my spline and liver had tumors on these orgins. I was sent to UAMS for advice. They decided to put me on Yervoy.

     

    The Yervoy treatment that was recommended was to have 4 treatments , 3 weeks apart.  The following is what I experienced.

    Treatment #1 - I spent the day in the hospital. Blood test, Another CT scan, then the liquid drip of Yervoy. At first I felt good. After a couple of hours I was very cold and shivering. I started having a low grade fever. (101F). The next day I woke up and felt ok. I continued to work and go about my business.

    Treatment #2 - After treatment #2 the side effects started coming in. I had severe rashes on my legs, waistline, and the behind. I was itching like you would not believe. I took some actions that may help you. First, I cut my finger nails down to the skin in order to eliminate the effects of scratching. Second, I used benydril at the maximum level I could use. 3rd. I showered with a soap made out of goats milk. And finally used a lotion called Sarna. I used it right after showering with my skin still moist.

    It seems that the turning point of the itching is when I switched from regular soap to goats milk soap. The Sarna lotion also helped considerably.Rash was gone in two weeks.

    After the second treatment is when I started considerable weakness and weight loss.

    Treatment #3 -  I still felt weak and was not eating well. I went from 220 lbs. to 190 lbs. but I did not have any other side effects to the Yervoy.

    Treatment #4 - Before the final treatment I felt fairly good. I could tell that the treatment was working. My urine went from a dark yellow back to normal color. All pain was gone. About two days after the treatment a side effect of loose stool started. This was happening 5-6 times a day. The hospital did a culture and did a little uncomfortable exploring to see if I had colonites. The doctors could not find anything but put me on Sulfasal-Azine anyway. After 3 weeks my loose stool went away.

    On March 14th (8 weeks after last treatment)I returned to UAMS and had a CT scan and blood test done. The findings were as follows. (1) Went from 190 lbs to 202 lbs.

    (2) The liver and spleen tumors were shrunk considerably. The doctor was very positive. I will be going back in two months to see if the tumors will reduce further.

    I hope with Gods help that this drug will save my life and that this blog will help those that are taking the drug Yervoy.  Stay positive. You will get through it.

     

     

    My Husband Olllie

    Dear amike1,

    My husband is on yervoy.  Had his first treatment. 3 days before his second treatment he broke out in a rash.  His Dr. put him on predisone and postponed 2nd treatment 1 wk.

    Had his second treatment last thursday.  Got back on predisone and now is having diahhrea.  He is still working and playing golf today.  He is sleeping more but keeps on going. 

    April 25th he will have his 3rd treatment.

    How are you doing now that you are done ?

  • Cjohno
    Cjohno Member Posts: 1
    Yervoy

    Hi, I'm a 37 yr old active female from the UK and fighting stage 4 metastatic melanoma. I was diagnosed with skin cancer 8 years ago via a mole on my back which I had removed and no treatment afterward. In 2012 I found a lump under my arm, which was melanoma in the lymph-node. I had 17 lymph-nodes removed and one was cancer.  After Ct scans they found 4 sesame seed nodules on my lungs 2 on each.

    I had 3 rounds of chemotherapy  - Dacarbazine, which did not work just made me really ill and one nodule grew very slightly. Following session I had treatment changed to Yervoy Ipilimumab which now I have had two sessions and about to go on my 3rd on the 25/04/2013.

    My 1st session was great hardly no side effects apart from feeling tired (but still kept active) and a little bit itchy which past over 3 days, also I became constipated within the first 5 days.
    My 2nd session went fine, although I had a urine infection toward the end which made me feel a tad sick, they gave me antibiotics which cleared it up. Two days later after my treatment I went to Rome for 5 days and came out in a rash all round my chest and back. I was very itchy and did have itchiness on the legs but no rash.  I was yet again constipated for 5 days and my stomach looked bloated all the time. Still felt tired but coped. 

    I now have a small lump on the side I got lymph-nodes removed at the side of my breast  and a cyst on my left breast. My breast have felt really sore throughout treatment. Doctors have said to keep an eye on right side lump as this could be the treatment making the melanoma flare up or some sort of infection and my lymph node is telling that there is infection. However two days ago I have found yet another small lump on the middle left side of my back which has freaked me out, but again the oncologist says this is normal. Anyone else had other lumps come out whilst on this treatment? I am using all kinds of creams to try stop this itch, it has calmed down a little, but the rash over my chest was awful. Suppose it will all flare up again next week maybe :(


    I have posted on UK sites but don't seem to get much of a response, feel so alone and scared, thx for listening!

     

    Claire xx

  • MikeW1958
    MikeW1958 Member Posts: 9
    i have some experience here

    i have done 6 of 8 chemo treatment of yervoy the heavy dose, u can read my pose farther down,

  • MikeW1958
    MikeW1958 Member Posts: 9
    Cjohno said:

    Yervoy

    Hi, I'm a 37 yr old active female from the UK and fighting stage 4 metastatic melanoma. I was diagnosed with skin cancer 8 years ago via a mole on my back which I had removed and no treatment afterward. In 2012 I found a lump under my arm, which was melanoma in the lymph-node. I had 17 lymph-nodes removed and one was cancer.  After Ct scans they found 4 sesame seed nodules on my lungs 2 on each.

    I had 3 rounds of chemotherapy  - Dacarbazine, which did not work just made me really ill and one nodule grew very slightly. Following session I had treatment changed to Yervoy Ipilimumab which now I have had two sessions and about to go on my 3rd on the 25/04/2013.

    My 1st session was great hardly no side effects apart from feeling tired (but still kept active) and a little bit itchy which past over 3 days, also I became constipated within the first 5 days.
    My 2nd session went fine, although I had a urine infection toward the end which made me feel a tad sick, they gave me antibiotics which cleared it up. Two days later after my treatment I went to Rome for 5 days and came out in a rash all round my chest and back. I was very itchy and did have itchiness on the legs but no rash.  I was yet again constipated for 5 days and my stomach looked bloated all the time. Still felt tired but coped. 

    I now have a small lump on the side I got lymph-nodes removed at the side of my breast  and a cyst on my left breast. My breast have felt really sore throughout treatment. Doctors have said to keep an eye on right side lump as this could be the treatment making the melanoma flare up or some sort of infection and my lymph node is telling that there is infection. However two days ago I have found yet another small lump on the middle left side of my back which has freaked me out, but again the oncologist says this is normal. Anyone else had other lumps come out whilst on this treatment? I am using all kinds of creams to try stop this itch, it has calmed down a little, but the rash over my chest was awful. Suppose it will all flare up again next week maybe :(


    I have posted on UK sites but don't seem to get much of a response, feel so alone and scared, thx for listening!

     

    Claire xx

    hi

    it is good to see someone that has some time, since diagnosis, i am starting my 2nd year  now

    there just isnt that many out there

    just had a recent surgery and now am restaged to 3C  , ill keep checking back for more,  good luck with ur treatments and your life,  hugs

  • JDDCLAN2
    JDDCLAN2 Member Posts: 2
    amike1 said:

    Yervoy is it working?

    I have went through the entire program with Yervoy. This is my story.

    I had a stage 4 melanoma mold on my back 3.5 years ago. I had surgery to remove the mold. Two months later I found to be "under the knife" to remove lymph nodes under my right arm. I had ct scans done every 6 months for 2 years with know sign of spreading in my body.  March 2012  I was experiencing illness (stomach) thinking that maybe I was experiencing gall bladder issues. I was sent by my doctor to get a scan at the local hospital. They found that my spline and liver had tumors on these orgins. I was sent to UAMS for advice. They decided to put me on Yervoy.

     

    The Yervoy treatment that was recommended was to have 4 treatments , 3 weeks apart.  The following is what I experienced.

    Treatment #1 - I spent the day in the hospital. Blood test, Another CT scan, then the liquid drip of Yervoy. At first I felt good. After a couple of hours I was very cold and shivering. I started having a low grade fever. (101F). The next day I woke up and felt ok. I continued to work and go about my business.

    Treatment #2 - After treatment #2 the side effects started coming in. I had severe rashes on my legs, waistline, and the behind. I was itching like you would not believe. I took some actions that may help you. First, I cut my finger nails down to the skin in order to eliminate the effects of scratching. Second, I used benydril at the maximum level I could use. 3rd. I showered with a soap made out of goats milk. And finally used a lotion called Sarna. I used it right after showering with my skin still moist.

    It seems that the turning point of the itching is when I switched from regular soap to goats milk soap. The Sarna lotion also helped considerably.Rash was gone in two weeks.

    After the second treatment is when I started considerable weakness and weight loss.

    Treatment #3 -  I still felt weak and was not eating well. I went from 220 lbs. to 190 lbs. but I did not have any other side effects to the Yervoy.

    Treatment #4 - Before the final treatment I felt fairly good. I could tell that the treatment was working. My urine went from a dark yellow back to normal color. All pain was gone. About two days after the treatment a side effect of loose stool started. This was happening 5-6 times a day. The hospital did a culture and did a little uncomfortable exploring to see if I had colonites. The doctors could not find anything but put me on Sulfasal-Azine anyway. After 3 weeks my loose stool went away.

    On March 14th (8 weeks after last treatment)I returned to UAMS and had a CT scan and blood test done. The findings were as follows. (1) Went from 190 lbs to 202 lbs.

    (2) The liver and spleen tumors were shrunk considerably. The doctor was very positive. I will be going back in two months to see if the tumors will reduce further.

    I hope with Gods help that this drug will save my life and that this blog will help those that are taking the drug Yervoy.  Stay positive. You will get through it.

     

     

    Dealing with Yervoy side effects

    aMile1, your comments above helped me tremendously.  I was on the verge of asking for steriods when I discovered your recipe for dealing with a severe rash.  The combination of Sarna, benadryl, and goats milk soap was the formula.  I actually added a very hot shower before bed using goat milks soap followed by a coating of Sarna and I finally slept.  The hot shower with a rash was the key to a good nights sleep.  I'm on day 9 of the rash and am hoping it's gone by day 14.  The rash started 3 days before my second treatment and became untolerable after the treatment.  I am staying positive and I do believe that God is good, God is in control, and God is big.  My mom lived 20 years after hospice care and terminal cancer.  God gave her a miracle.  God has many more miracles coming our way.  

  • Sarah158
    Sarah158 Member Posts: 4
    Looking for MikeW1958

    Mike, how are you doing?  My name is Sarah.....my significant other, Rog, is going to start taking Yervoy.......it is a big step for him.......and for me..........any words of wisdom?

  • soul-mate
    soul-mate Member Posts: 82
    Sarah158 said:

    Looking for MikeW1958

    Mike, how are you doing?  My name is Sarah.....my significant other, Rog, is going to start taking Yervoy.......it is a big step for him.......and for me..........any words of wisdom?

    Hi Sarah

    You were on chat looking for Mike1958 . I see your new here and to see about mike click on his name in blue box next to his post. You will have info he put in his profile and you will notice he has not been on since April. I hope this helps a bit, and feel free to post and replies should come.

    SOUL-MATE

  • Sarah158
    Sarah158 Member Posts: 4
    soul-mate said:

    Hi Sarah

    You were on chat looking for Mike1958 . I see your new here and to see about mike click on his name in blue box next to his post. You will have info he put in his profile and you will notice he has not been on since April. I hope this helps a bit, and feel free to post and replies should come.

    SOUL-MATE

    Thank you

    Thank you.......you are the best

  • MikeW1958
    MikeW1958 Member Posts: 9
    soul-mate said:

    Hi Sarah

    You were on chat looking for Mike1958 . I see your new here and to see about mike click on his name in blue box next to his post. You will have info he put in his profile and you will notice he has not been on since April. I hope this helps a bit, and feel free to post and replies should come.

    SOUL-MATE

    about sarah's question

    i got a email today and replied yes it has been a time since i have been on this website,FB has more to offer

    i am a member of 4 groups just for melanoma and those that are stage 4

  • joey111
    joey111 Member Posts: 3
    Hi this is my first time on

    Hi this is my first time on here  People using Yervoy  is there any info re this treatment anyone can give me 

     Are there any long term survivors and how long please

     

  • joey111
    joey111 Member Posts: 3
    Cjohno said:

    Yervoy

    Hi, I'm a 37 yr old active female from the UK and fighting stage 4 metastatic melanoma. I was diagnosed with skin cancer 8 years ago via a mole on my back which I had removed and no treatment afterward. In 2012 I found a lump under my arm, which was melanoma in the lymph-node. I had 17 lymph-nodes removed and one was cancer.  After Ct scans they found 4 sesame seed nodules on my lungs 2 on each.

    I had 3 rounds of chemotherapy  - Dacarbazine, which did not work just made me really ill and one nodule grew very slightly. Following session I had treatment changed to Yervoy Ipilimumab which now I have had two sessions and about to go on my 3rd on the 25/04/2013.

    My 1st session was great hardly no side effects apart from feeling tired (but still kept active) and a little bit itchy which past over 3 days, also I became constipated within the first 5 days.
    My 2nd session went fine, although I had a urine infection toward the end which made me feel a tad sick, they gave me antibiotics which cleared it up. Two days later after my treatment I went to Rome for 5 days and came out in a rash all round my chest and back. I was very itchy and did have itchiness on the legs but no rash.  I was yet again constipated for 5 days and my stomach looked bloated all the time. Still felt tired but coped. 

    I now have a small lump on the side I got lymph-nodes removed at the side of my breast  and a cyst on my left breast. My breast have felt really sore throughout treatment. Doctors have said to keep an eye on right side lump as this could be the treatment making the melanoma flare up or some sort of infection and my lymph node is telling that there is infection. However two days ago I have found yet another small lump on the middle left side of my back which has freaked me out, but again the oncologist says this is normal. Anyone else had other lumps come out whilst on this treatment? I am using all kinds of creams to try stop this itch, it has calmed down a little, but the rash over my chest was awful. Suppose it will all flare up again next week maybe :(


    I have posted on UK sites but don't seem to get much of a response, feel so alone and scared, thx for listening!

     

    Claire xx

    I feel for you  my hubby is

    I feel for you  my hubby is just starting Yervoy he has stage 4  melanoma cancer has it in the liver vertibre tumour near the stomach and near the lung I am just beside myself with worry I pray so hard that this drug prolongs his life dr said without treatment 3 month with 8 months  was wondering how you are going  ??

    Please let me know 

  • joey111
    joey111 Member Posts: 3
    MikeW1958 said:

    about sarah's question

    i got a email today and replied yes it has been a time since i have been on this website,FB has more to offer

    i am a member of 4 groups just for melanoma and those that are stage 4

    Melanoma - pls just wanting info

    Hi Mike

    My name is Joey and I am from Adelaide Australia

    My husband has 4 stage Melanoma and has just had one dose of Yervoy so far the only only side effect is tiredness in the afternoons

    After 2 weeks he is now starting to have liver pains and back pains

    He has Melanoma in the liver ( bad ) in the hip bone upper bone in the back and in a lymph glad near the lung.

    I was wondering do you have Melanoma throughout your body like my husband ? Mike this is killing me seeing my husband getting thinner and thinner b4 my eyes. He is all I have we have no

    family at all just the two of us he is my soul mate. I really hope you don't mind me emailing you I have no one to talk to and just need a bit of help as to your condition how long you have been on this etc  Please can you help me.

    Thanking you for your time  Joey   joeyaus90@hotmail.com

  • Tomo1926
    Tomo1926 Member Posts: 1

    Yervoy side effects
    I am a stage 3c metastic melonama patient I am participating in a clinical trial of yervoy. I saw your posting and wondered how your doctor treated the itching? I had my first infusion of yervoy 3 weeks ago. I told my doctor of the side effect and she put me on a steroid called Prednisone. Now she is telling me I can't have my next scheduled infusion until I am no longer taking the prednisone. This is very frustrating because this could potentially delay my treatment for another month.

    stage 3c

    I am stage 3c metastic melonama patient as well.  I am to receive 4 treatments every 3 weeks.    Had a mold removed on inner right leg and labs showed the melanoma went 2.5 inches into me.  After 2 surgeries a total of 10 lymph nodes were removed and 5 of them tested positive and removed tissue where the mold was. The melanoma spread to the right pelvis area.  so I started my first treatment of yervoy on March 20 ,2015. this teatment will continue every 3 weeks for 4 times.  The treatment today is based on one's weight as far as the strenght of yervoy.  Sounds like the goat soap is working good, because the  itching is just stating to happen.     

  • jyoung25
    jyoung25 Member Posts: 3
    Tomo1926 said:

    stage 3c

    I am stage 3c metastic melonama patient as well.  I am to receive 4 treatments every 3 weeks.    Had a mold removed on inner right leg and labs showed the melanoma went 2.5 inches into me.  After 2 surgeries a total of 10 lymph nodes were removed and 5 of them tested positive and removed tissue where the mold was. The melanoma spread to the right pelvis area.  so I started my first treatment of yervoy on March 20 ,2015. this teatment will continue every 3 weeks for 4 times.  The treatment today is based on one's weight as far as the strenght of yervoy.  Sounds like the goat soap is working good, because the  itching is just stating to happen.     

    My husband is doing clinical

    My husband is doing clinical trials for stage 4 melenoma. He had his 2nd treatment of Vervoy April 1st. He has tumors on his lung stomach pancreas and a large on on his righ thigh muscle. I bought him soup made with lambs milk. he only got a rash for a few days the 1st treament. He's doing OK. He has pain at the tumor sites. Doctors say that may be a good thing. The tumors are inflaming and that may be a good sign. Please let me know how you are doing. stay stong