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Yervoy

txhamilton5
Posts: 11
Joined: Aug 2010

Has anybody begun the Yervoy drug yet? My mom is supposed to start in about 10 days.

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Zod66
Posts: 28
Joined: May 2008

This drug was just approved by the FDA on March 25th 2011 so unless someone was part of a test group your mom will be one of the first.
The article I read says this drug is used to extend the life of those diagnosed with metastatic melanoma. If this is the case I'll assume your mother's melanoma is advanced and I wish you and your entire family the best. There is always that crazy 'call-it-what-you-want' instance where someone defies the odds. I sincerely hope your mom is one of those stories.

txhamilton5
Posts: 11
Joined: Aug 2010

Yes, this is the newest FDA drug approved for advanced metastatic melanoma. My mom had her first infusion last week (April 26, 2011). She lives in Florida so I do not get to see her often. However, she said that she really does not have any side effects from the first treatment. She will receive one treatment per month for a total of 4 months at a cost of $132,000 to her insurance company.

I will be participating in the Aim at Melanoma Aim for a Cure Walk in Dallas this weekend in her honor.

Kathy Strauss
Posts: 2
Joined: May 2011

My daughter had her first injection same day and too has had no side effects from it yet, however, the P.A. we talk with hedges around the idea that it is just the first injection and we have to see how she reacts as she gets each one. So being around this long enough sounds like side effects are premature to judge. I hope our family members don't have too much trouble with this drug. It's so new they don't know how it affects each individual as melanoma is the hardest of cancers to treat for that reason. It doesn't react the same way to everyone. So each treatment plan has to be customized to that individual. No treatment plan is ever the same. Good luck to your mom. We wish her the best.

jessicarhodes's picture
jessicarhodes
Posts: 15
Joined: Mar 2011

My daughter is debating this drug. Is your mom doing ok on it so far?

Kathy Strauss
Posts: 2
Joined: May 2011

Yes. My 38 year old daughter had her first injection a week ago Wednesday. It just got approved by the FDA in March and is for the treatment of metastazied melanoma. My daughter is a patient at MD Anderson Hospital in Houston. It is our understanding this is a series of four injections with three weeks between each injection. It is suppose to boost the immune cells so that no new tumors grow so the tumors that are here can be treated. Google yervoy and you will find the information.

txhamilton5
Posts: 11
Joined: Aug 2010

So far the side effect that my mom is experiencing is itchiness. How about your daughter? I wish her and your family the best too. Hoping that this new drug can be the answer to our prayers for all melanoma patients!

txhamilton5
Posts: 11
Joined: Aug 2010

My mom had her second Yervoy infusion last Tuesday. By Friday she had fever, chills, nausea and diarrhea and itchiness. She is much better today (Monday). What symptoms are others experiencing so far?

kp4mpr
Posts: 2
Joined: May 2011

Hi Hamilton,

I will begin my treatment with Yervoy very soon, I would like to know how your mom still reacting with Yervoy. Thank You for sharing the info. is very useful for everyone specially the one's are giving the battle with Cancer. God Bless your mom and all your family!!

txhamilton5
Posts: 11
Joined: Aug 2010

I believe my mom was treated with just benedryl for her itching. She has had some response to the Yervoy. We are still holding out hope that the next scans in January will show more response and shrinkage of various metastatic tumors.

I have seen others on another support site who needed Prednisone to get through their Yervoy treatments for various side effects. I believe one board is the Melanoma International site. I hope you were able to complete your treatments by now.

Prayers to all who are fighting melanoma! May the new year find even more promising treatments!

dallaslevel3c
Posts: 1
Joined: Dec 2011

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.

Fowlera1
Posts: 1
Joined: Aug 2011

Hello, My name is Andrea, I am 39 years old and I have just been recently diagnosed with Stage 4 Melanoma and was wondering how your family members are doing with this treatment. This is a treatment I am considering. I would really appreciate any feedback you can give me.

momof2kids
Posts: 3
Joined: Sep 2011

I was diagnosed as Stage IV in June 2011 (I'm 31 years old), as I had 2 brain spots, then found out I had 2 spots in my right Lung & 1 spot in my Liver.

I had a few problems with my head/eyes after surgery, and took almost 2 months to correct including the Gamma Knife surgery, and I just finally started treatment on Sept. 2nd 2011.

My 1st treatment is the YERVOY. Had my 1st injection, no side effects besides super itchy skin on my head.

I go for my 2nd injection Sept. 23rd, hoping I don't get any bad side effects, can't remember if there are any good ones (that prove it may be working).

Just super scared, all us young people, it's a scary beast we are facing and with 2 young kids (ages 2 & 6), I need to fight this ***** as good as I can.

Littlered43
Posts: 4
Joined: Nov 2011

I am on my second treatment of yervoy and i am wondering how u did with the treatments i also have two kids they are older 17 and 14 i am a single mom. i am scared of the out come. I like u have no chioce but to fight with all i have and pray that God will see me through this horrible cancer. I am Stage 4 Metistatic Melenoma i have a tumor in my right lung and one in my leg and my back bone, vertibra.

lmaso1
Posts: 9
Joined: Apr 2012

My husband is going to start his treatments next week, his also spread to his lungs, liver & spine. how are things going?

Littlered43
Posts: 4
Joined: Nov 2011

I am on my second treatment of yervoy and i am wondering how u did with the treatments i also have two kids they are older 17 and 14 i am a single mom. i am scared of the out come. I like u have no chioce but to fight with all i have and pray that God will see me through this horrible cancer. I am Stage 4 Metistatic Melenoma i have a tumor in my right lung and one in my leg and my back bone, vertibra.

Littlered43
Posts: 4
Joined: Nov 2011

I am on my second treatment of yervoy and i am wondering how u did with the treatments i also have two kids they are older 17 and 14 i am a single mom. i am scared of the out come. I like u have no chioce but to fight with all i have and pray that God will see me through this horrible cancer. I am Stage 4 Metistatic Melenoma i have a tumor in my right lung and one in my leg and my back bone, vertibra.

Littlered43
Posts: 4
Joined: Nov 2011

I am on my second treatment of yervoy and i am wondering how u did with the treatments i also have two kids they are older 17 and 14 i am a single mom. i am scared of the out come. I like u have no chioce but to fight with all i have and pray that God will see me through this horrible cancer. I am Stage 4 Metistatic Melenoma i have a tumor in my right lung and one in my leg and my back bone, vertibra.

gerrylc
Posts: 1
Joined: Jul 2012

I STARTED YERVOY MID-MAY. FIRST TREATMENT GAVE ME A RASH FOR ABOUT 1 1/2 WEEKS. THEN IT WENT AWAY AND I FELT GOOD UNTIL THE THIRD TREATMENT. THAT ONE, A WEEK AGO, MADE ME NEASEAOUS AND GAVE ME MILD DIARRHEA. THAT'S WHERE I AM NOW. HOW'S YOUR MOM DOING? btw, I'M 67 YEAR OLD FEMALE

MikeW1958's picture
MikeW1958
Posts: 9
Joined: Jan 2013

i am part of a clinical trial and my chemo treatments are Ipilimumab (Yervoy)

May 7th, 2012 was my first chemo

i am currently at 6 of 8 scheduled treatments, it accumulates after the 5th dose

after they cut out all of my lymph nodes, every CT scan to date has been NEG

for the itching they ordered me a cream (triamcinolone 0.1% cream)

Lilly2013
Posts: 12
Joined: Jan 2013

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

MikeW1958's picture
MikeW1958
Posts: 9
Joined: Jan 2013

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
Posts: 2
Joined: Mar 2013

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's picture
MikeW1958
Posts: 9
Joined: Jan 2013

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
Posts: 1
Joined: Apr 2013

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 ?

JDDCLAN2
Posts: 2
Joined: Mar 2013

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.  

Cjohno's picture
Cjohno
Posts: 1
Joined: Apr 2013

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's picture
MikeW1958
Posts: 9
Joined: Jan 2013

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

joey111
Posts: 3
Joined: Oct 2014

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 

MikeW1958's picture
MikeW1958
Posts: 9
Joined: Jan 2013

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

Sarah158
Posts: 4
Joined: Aug 2014

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's picture
soul-mate
Posts: 60
Joined: Feb 2014

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
Posts: 4
Joined: Aug 2014

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

MikeW1958's picture
MikeW1958
Posts: 9
Joined: Jan 2013

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
Posts: 3
Joined: Oct 2014

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

joey111
Posts: 3
Joined: Oct 2014

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

 

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