› Forums › General Melanoma Community › advanced melanoma
- This topic has 13 replies, 6 voices, and was last updated 3 years, 8 months ago by
Phyllisd.
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- August 11, 2020 at 12:29 am
I am wondering if anyone has had luck with advanced stage melanoma using nivolumb and ipilimunab together? My husband was diagnosed in May , at that time it spread to nearby lymph nodes he had two treatments and was doing good , we thought. but yesterday he noticed a cluster of bumps on his stomach close to the first spot he had in may.. the melanoma is spreading… we are scared and anxious .. not ready to lose hope but could use some encouragement, we are not eating or sleeping…. any success story with advanced stage melanoma
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- August 11, 2020 at 1:13 am
Hi –
I am so sorry that your husband (and you!) are having to go thru this. While I can’t personally attest to the combination (ipi + Nivolumb) you noted, likely someone else on this site can. Hang on to that hope and keep asking questions. This site was a lifeline for me when I was dx’ed at Stage IV on Aug 11, 2005 and throughout my treatments, surgeries and trials. Tomorrow marks my 15th year as a Stage IV survivor – I’ve had no evidence of disease (NED) since early 2009 after a full response to the Ipi trial I was on. Hang in there!Rocco, Stage IV in Aug 2005, NED since 2009 – full response to Ipi (MDX-101 trial)
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- August 11, 2020 at 1:43 am
Lots of patients here have had success as Stage IV melanoma peeps treated with immunotherapy! Ipilimumab (Yervoy) alone has a reported response rate of only 15%, yet there are lots and lots of people like Rocco who became NED – and stayed that way – with just ipi alone. The anti-PD-1 products nivolumab (Opdivo) and pembrolizumab (Keytruda) both have a response rate of about 40% when used as single agents. After progressing to Stage IV with brain and lung mets in 2010, I gained entry into a phase 1 nivo trial. I had my last dose in June of 2013 and remain NED for melanoma today. The ipi/nivo combo has even better response rates at 50%+ with many on this board alive and well because of it!!!Sometimes there can be what seems to be progression with the growth of new tumors or enlargement of existing ones when immunotherapy is begun, which is certainly not what any of us want to see or hear and can be disturbing to say the least. However, with all immunotherapy, responses are not expected until – on average – around 3 months. However, melanoma big dogs say, when it comes to immunotherapy and response – “Be patient with the patient!” Here is a link to a thread on this board that gives personal experience to support that statement: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/be-patient-patient
If you feel a picture is worth a thousand words – here’s a graph that notes time to response for ipi/nivo that may interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html
Hope that helps. I’m sure others will respond with their stories. I know this has been a horrible time for you and your husband. I would encourage you to pick some sort of “name” for your account. Anonymous entries can tend to run together and folks can’t really respond very accurately if they don’t know which history this “anon” has. Up to you. I wish you both my best and hope you get good news very soon! Yours, celeste
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- August 11, 2020 at 3:26 pm
Hi, I was stage IV Feb 2016 with metastasis pretty much all over including scalp, liver and spleen. I got through all 4 doses of ippi/nivo without many side effects and continued on with keytruda there after and last treatment was August 2017. I go for scans every 6 months and they continue to be stable. Next scans scheduled for November. Fingers crossed. We are very fortunate they now have these medicines available to us. Heidi -
- August 11, 2020 at 6:22 pm
thank you all for your responses… they sound encouraging…. Im sorry about the anonymous, I will have to change it to dina . It helps to hear from others, We thought that maybe the tumors came because of the immunotherapy.. He is doing better than me I have to say.. positive attitude helps too.. I will get there…-
- August 12, 2020 at 12:57 pm
Hi, just wanted to jump in that I’m the spouse of a person that got diagnosed with advanced melanoma and it’s a real roller coaster. In certain ways it can feel harder to be caregiver, you just feel a little helpless at times for sure. My husband seemed to mentally accept after a few days and move on whereas I really struggled, you feel out of control for sure. You will get a lot of good advice on this board from both caregivers and patients! Many hugs, and the IPI/Nivo combo definitely has produced the most promising outcomes and as Bubbles stated above, a lot happens early on in treatment that can be unexpected, be patient with the patient. You will get there! -
- August 13, 2020 at 11:50 am
Hi Phyllis! Thank you for asking, he is doing well. He hasn’t been scanned in about 1.5 years (due to cancelling last scan and then pandemic), but he seems to be doing well, he had a really interesting initial presentation of the disease. You are talking to the right lady, I actually dealt with anxiety disorder in my 20’s so I thought I was prepared for the anxiety and all the tools (and it definitely helped that I knew the signs and knew to reach out to others) , but the scanxiety and unknown of the diagnosis and disease progression in someone I loved was pretty overwhelming. I’m so glad you got a prescription and recognize that this is difficult. It will get better and you can reach out to me at any time. Sadly, I really shine in the anxiety support realm, I’ve had a lot of experience 🙂 Keeping my fingers crossed for your husband, many hugs and this group give you some great information and support! -
- August 14, 2020 at 12:15 am
Jackie, Thank you for your support.. I got the prescription for lexapro but i didnt take it! I got scared after reading all the side effects and reviews of what people were saying… sounds scarier than the aniexty!!! I am doing mediation music yoga poses, talking to my family and friends,, and taking melatonin at night.. idk .. I may start taking 5mg. still not sure… why and I more axnious thn my husband, who actually has the cancer! this group has been great and Im glad i found it… thanks you for your help and hugs ! hugs to you as well
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- August 12, 2020 at 4:05 pm
I did ipi/nivo starting in March. (My oncologist alternated between ipi+nivo and nivo alone — coronavirus concerns.)About a month ago I noticed a new lump on my neck. We did a PET scan and I have two new, large-ish tumors. On the upside, my original tumors either shrank substantially or disappeared altogether. But the new growth is a big concern.
My oncologist thought it would be worth combining an immunotherapy with BRAF targeting drugs. (I don’t know if that’s an option for your husband.) I saw a melanoma specialist yesterday for a second opinion and he agreed.
So I would communicate to your oncologist ASAP, and don’t lose hope — the drugs may be working, just not perfectly, and there are other things to try!
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