› Forums › Cutaneous Melanoma Community › Second ipi/nivo infusion – Update
- This topic has 6 replies, 5 voices, and was last updated 4 years, 3 months ago by
Sharon93065.
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- January 2, 2020 at 7:50 pm
Hello all,My first ipi/nivo infusion was 11/30/19 and besides some nerves that made me sick in the first few hours, everything went well. I did get the rash in week two, but it wasn’t severe and I was able to handle the itch. It went away before my third treatment. I did develop some new, fleshy, pink/colorless lumps on my scalp. I also am having blurry vision – off and on, but it’s pretty bad when it’s on. I had a doc appt at MD Anderson before my second infusion where we went over these symptoms.
Doc referred me to a dermatologist re: new scalp lumps, and to a ophthalmologist re: blurred vision.
I had my second ipi/nivo infusion on 12/21/19. Other than the clinic running two hours behind, and a nurse who busted one of my veins pretty well… all went smooth. I’m two weeks in and kind of feel just like I have a bad cold – even though I don’t. My muscles feel odd… when I stretch, the stretch feeling lingers long after I’m done stretching and I can only describe this as feeling like I have a tad of muscle weakness. But for the most part, I feel fine! I want to sleep as much as I can, but who doesn’t?
I met with the dermatologist last week regarding the new lumps on my scalp. She did a full body skin check and ended up doing a scrape biopsy on the scalp and a punch on a suspicious mole on my back. I have two questions on anyone who’d like to weigh in:
1) Is it odd that I was diagnosed 10/29/19 with Stage IV melanoma through a breast biopsy, yet haven’t had a full-body skin check to even look for a possible second primary?
2) Also, a punch biopsy on a suspicious mole and a scrape on the new lumps that popped up on my scalp – does it really matter if they come back as melanoma? I’m already going through treatment, it’s not like there’s anything else they can do, right? Or do I have that all wrong?
As far as the ophthalmologist, he’s booked through February – so it’s one of those “call every day and hope for a cancellation” kinda things.
Just wanted to give an update to anyone who has been following… plus, it’s therapeutic just to kind of write things out!… so thanks for reading 🙂
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- January 2, 2020 at 8:03 pm
When I was first diagnosed, way back in 2000, I was stage 3 with lymph node involvement no primary site. Is it possible that you do not have a primary site? But I was sent to a variety of Dr’s looking for a primary site – which was never found. And I have gone to a melanoma clinic every year since my diagnosis for full body checks. Re-occurrence July of this year, started the ipi/nivo in September, completed early December. Waiting for PET scan at end of month to see how that worked, and am now on just nivo.
Pretty much no other treatments to do, but it’s good to keep a check of where your melanoma is and if it has spread from where they originally found it.
I was also told to never let them do a shave biopsy of any findings on my skin because I do have melanoma, but that was years ago and don’t know if that is still the same -
- January 3, 2020 at 3:41 am
I am glad you are handling the combo infusions well. I remember a bit of an eye issue with me however it cleared up on it’s own. I think you should be a bit more persuasive with the ophthalmologist since this is not a normal eye exam. When I explained my situation, I was seen within a week. You may need to call around a bit.
After my 2 nd combo infusion, some of my small lipoma bumps (one on side of my neck and the other just above the side of the knee) swelled for a few days and shrank almost completely. Previously they were pea sized subcutaneous lumps, now they are hard and the size of a small grain of rice. Perhaps the lumps on the scalp you are presently experiencing are somewhat the same?
As far as the needles/veins are concerned, I have a port and it is truly a life saver. I spoke to many various cancer patients who are on chemo and other IV treatments and they are all extremely happy with their ports. My surgeon who placed my port informed me that the longest a patient had one was 17 years. That made me feel much better.
My stage IV was diagnosed after a liver biopsy. The primary was never found however my oncologist believes it would not make a difference since the standard treatment remains the same. I often wonder, if I was more diligent maybe I would not end with a stage IV diagnosis but hindsight is 20/20.
Wishing you continued success with your treatment and a Happy New 2020.
Melanie -
- January 3, 2020 at 2:35 pm
If I make it 17 years, with or without my current port, I’ll be very happy. -
- January 3, 2020 at 6:32 pm
NB: don’t panic yet about the blurred vision. I personally found it terrifying but it did resolve.Some specialists at some offices will book you earlier if you tell them blah blah cancer. Last year I developed a ingrown toe nail that was a complication from my stroke and steroids. The podiatrist was really annoyed that it took two months to see me because I ended up needing the entire thing removed which ended up with a 9 month recovery compared to a minor removal. He said the office would have squeezed me in.
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- January 12, 2020 at 4:45 am
I was only able to have 3 of the 4 combo treatments Yervoy/Opdivo but had to stop due to toxic liver. I would wake up at 2 am with rashes.
What really help me is the Trader Joes Tea Tree Oil, Peppermint, Eucalyptus Body Wash, Shampoo, Conditioner. With adding a few drops of Tea Tree Oil in it.
I would put the Body Wash all over and let it set for a few minutes. Same with shampoo, such a relief. Also Allegra non drowsy antihistamine helped with the rashes if I took in am.
Eczema Cream with colloidial oatmeal, adding a few drops of tea tree oil. These helped me and at times when I get some rashes on upper back chest I still do this.
Sharon Simi Valley, Ca
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Tagged: cutaneous melanoma
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