I’m new here. Looking for empathy and trying to understand what my family are going through. Trying to keep positive but finding it hard.
A couple of years ago my brother had a mole removed from his back under local anaesthetic. This was followed by a scan which was all clear. He unfortunately had no follow up scans until he found a lump on his right side under his arm pit in May. He was given a number of scans and had surgery to remove the tumour/mass from his side (the size of a football) and half the lymph nodes on right side.
Following another scan they found a lesion on his shin bone and he had 5 consecutive days of radiotherapy.
He started immunotherapy on 5th Nov and was due 4 doses, one every 21 days. The first round went okay and he just felt tired. He had the second treatment on 26th Nov. But this time he had significant diarrhoea and nausea, also night sweats and was admitted to hospital on 13th December because of dehydration. He’s now been on successive drips since then and blood tests show low levels of potassium. He is continuing to suffer from diarrhoea and now sickness. He’s lost 3stone in less than 6weeks. They are now saying they may not discharge before Christmas.
Is this the normal experience of immunotherapy?
It’s not clear to me what the prognosis is for my brother.
Our dad died unexpectedly in March this year - I don’t want to lose my brother too.
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Zeet2018
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To answer your question about your brother, immunotherapy does come with side effects. It is different for every person. I was always told that it meant the meds were doing what they were made to do, fighting the cancer. Thinking of your brother and entire family this holiday season.
Thank you so much for your message. The holiday season has been tough but ironically eased by the distraction of daily hospital visits to see my brother. Each day came with the promise of “home today” only for them to change their minds when the blood test came back. He does look better, certainly not as grey, and is starting to eat.
Face time was a God send bringing all the family into the room to cheer him along.
Melanoma is a sneaky snake of a cancer. It can lie in wait, lurking for future strikes. Your brother sounds like he has an aggressive presentation that has metastasized (spread to distant locations) and that the medical team is being aggressive in responding to his presentation.
I'm not sure which country you live in (Australia, New Zealand, Great Britain are initial guesses) and how your health system works because access and treatment options vary by country, and even region and town based on the experience of the treatment team.
If you've read through these threads at all you'll note that those of us here who have been living with melanoma for some time are big proponents of learning as much as we can about the disease. Not all patients and family members feel this way, and that's ok. For some folks they just want to know where to show up for treatment and do their best to live with the protocol.
All immunotherapies come with side effect profiles that have commonalities: nausea, diarrhea, exhaustion, skin rash are all super common, but not everyone gets them all. some of the immunotherapies have a history of "rougher" sideeffects than others (for example ipilimumab/ Yervoy is well known for ugly GI effects but pembrolizumab/ Keytruda has a less frequent profile for diarrhea. Some side effects can be life threatening like loss of function of the pituitary and adreanal glands, so blood work and asking the doctor/ nurse whenever you see something unexplained so they can determine what is a low level problem and what requires emergency intervention is the way to go. But as Vflowers said below, every person is different.
My husband had a grade 3 side effect to Yervoy that kept him on oral steroids for 5 months and eventually resulted in an infusion of Remicade to reset his bowels from chronic diarrhea (which worked great!)
Physicians now tend to recommend an immunotherapy based on the genetic type (V600 mutation series or 'wildtype'/ non-V600 series. Locations of tumors, speed of growth, how the cancer is staged, age and general health of the patient all have influence as to what treatment is used, and in combination with what other approaches, and in what order.
How does your brother feel about you sitting in on appointments with him and asking direct questions of the provider? If he is ok with this, you may want to write down all your questions.
Here are some resources to help you design questions and to share general knowledge about melanoma from US sites below.
I'm so sorry that this is a year of heavy grief and burden for your and your brother. It's clear you love him deeply and that this is a time of great anxiety for you. Immunotherapy has revolutionized treatment and improved the length of life and survivability of melanoma. I wish only the best outcome for your brother.
Here is how I learned how to absorb this kind of technical information:
1. Deep breaths. You are both in for a steep and fast learning curve.
2. You're going to continue to have questions, so most of us either have a notebook, or take a computer to write questions and answers in for ongoing tracking.
3. Here is a recent document about melanoma and treatment. The further into the document you get the more technical it is: cancer.net/cancer-types/mel...
4. The Melanoma Research Foundation has pages that may be helpful for the newly diagnosed person (including a link to the Ask a Nurse Email program), treatment (including how to find clinical trials, which need a referral from your doctor and for which the patient must be a US citizen), and guidance on some questions to ask your provider: melanoma.org/understand-mel...
5. Many of us have had to learn medical terms the old fashioned way: via dictionaries and asking for what words mean from providers. Here is a glossary of melanoma terms with a search function that listed most of the words you had questions about in your posting: melanoma.org/understand-mel...
6. Gather your support community of which we are now an honored part. All of us would encourage you to only use legitimate science supported sources for information and to ask your providers how that information applies/ does not apply in your case. There is a lot of frightening stuff out there in the web and feel free to move on when you run into it.
7. You are likely in for more testing and second looks at pathology reports so your brother’s careteam can make the best informed recommendations to him regarding ongoing treatment choices. It's always ok to ask for a second opinion, for clarification as to why this treatment was recommended over others, what the risks and benefits are and likeliness of success. And ask how the team defines "success".
8. There may be a local melanoma or general cancer support group in your area. Your melanoma specialist should know, or contact Melanoma Research Foundation in the US if this might be helpful for you all.
Take care of yourself even as you join forces to care for your brother.
Thank you so much for your response. It’s been a real blessing.
We are in the UK and the treatment and care has been excellent (with the obvious exception of the doctor treating the original melanoma two years ago - the department has been subsequently been closed which I think says a lot).
My brother is being treated with Ipilimumab (Yervoy), the first dose was early Nov and the 2nd dose 21 days later. This time the side effects hit hard with increasing tiredness, sickness and severe diarrhoea. He had a couple of admissions to hospital because he was dehydrated and then became so ill they admitted him on 13th December, supposedly for a few days. Unfortunately, he wasn’t discharged until this morning. It appears that they have been unable to get his potassium to a level they are happy with. He has been on drips continuously, however, having changed one of the meds they do seem to have stopped the diarrhoea long enough for him to eat.
At hospital he was restricted to a side room with restricted access and imposed infection control - so now back at home with his partner he can at least move around, walk in the garden, sleep in his own bed and eat good food. He was so low and listless at least his spirits will be lifted a little.
Monday he’s back at the hopital for blood tests and another round of scans before they return to the treatment plan and dose three.
I shall take a look at the sites you suggested.
It’s so hard not to extrapolate to the worse case scenario but I’m endeavouring to take it a day at a time.
Yervoy is a tough bear for side effects, so I'm glad he is closely monitored and is able to tolerate eating again. Even if he does not get all 4 rounds, the immunotherapy is active in doing work. My husband had to stop after the 3rd round due to a grade 3 side effect. Monitoring for pituitary and adrenal gland outputs is of concern with all the immunotherapies as they can experience heavy damage, so it's good there is blood work on Monday.
It's always more heartening to be home rather than in hospital, so I'm glad for this blessing for your brother, his partner and you.
Peace and health in the new year to you and yours,
I am sorry about your father and that your brother and family are now dealing with this disease. The drugs do affect everyone differently and sometimes the symptoms go away. We will be thinking of your family and I hope that your brother feels well enough to be home for Christmas.
Dear Zeet2018, I am so sorry to hear your brother is going through this. I agree with everything everyone has said. Hang in there this is a lot to process so quickly. My husband has Advanced Stage IV Metastatic Melanoma, and the 1st 3 months after diagnosis and starting treatments he was so ill, and hospitalized 3 times for a week each. They finally found he also had an underlying blood infection contributing to how bad he was feeling. I’m sure they are checking for all possible causes for his not feeling well. I understand the overwhelmed feeling, and helplessness, but you may need to be his advocate as suggested above. What immunotherapy is your brother on? My husband started on Opdivo/Yervoy, he could only take 2 doses of the Yervoy, and continues today on just the Opdivo. Have they given your brother anything for his nausea, or diarrhea, and it isn’t working? My husband’s Dr told us it would get worse before it got better and he was right. My thoughts and prayers are with your brother and you. Take a deep breath, and take it day by day. There is a lot of support here. We all care.
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