Immunotherapy

Hi I have stage 3 melanoma I started my first Pembro earlier this month. Up to now I feel completely fine no side effects , I had my 3 weekly blood test this week an the nurse rang to say they are all fine to have my next treatment in 3 weeks. Everyone differs you don't know how your gonna react I may have side effects after my next tratment it just depends really . Hopefully he will won't good luck X

Thanks for the reply. Can I ask how often you have treatment and how long the treatment takes. We were told he would start off having it every 3 weeks and then it will change to every 6 weeks, I just wondered if yours was the same.

Mine is every 6 weeks they said ( they did tell me they used to give it every 3 weeks but it's changed to 6 weeks but each hospital maybe different ?)  It takes ten mins to flush the drip then 30 mins on the drip then another ten to flush afterwards so your probably there Bout an hour in total you might be there longer first go as you have questions and forms to sign X

Hi Tan21, I am on Pembrolizumab as well, I started it in 2016 when melanoma had spread to my ovary after being in many lymph nodes on diagnosis. My profile shows how I’ve had breaks and restarted on Pembro, my next dose is #52. 

In the hospital I’m at the protocol is to do the 1st 2 doses at 3 weeks and then move to 6 weekly, the less times you have to go to hospital the better. When 3 weekly my dose was based on my weight. At 6 weekly they give a generic amount not based on weight but on averages. As my husband can no longer come in with me he either stays in the car or goes for a walk around for the hour/ hour and a half I’m in there. Sometimes there’s some waiting around before you start and I have trouble with the cannula going in sometimes. I now text him when the Pembro starts and when it finishes so he knows how long I’m going to be. Sometimes they use a syringe to flush water in at the start and the end instead of water going in on a drip so they can keep more to time. I had a all over body rash the first time I had it and all freckles disappeared. I have tiredness for a few days after each dose, but continue at half pace. Everyone is different, there a lot of info on fatigue and side effects in the Macmillan info and support pages as well.

Thanks for the reply and I will be doing the same as your husband either going for a walk or taking my kindle as it's not worth me going home and then back to collect my husband due to it being a 45 minute drive to get to the hospital. My husband is hoping to work between treatments. Have you worked between yours?

Hi Tan21, no I haven’t worked between treatments unless volunteering counts, I took early retirement and my husband after a while reduced his hours so he could come with me to every appointment. Many do carry on as normal it depends on the type of work and how side effects go, and adjuvant treatment is only for 12 months. 

Hi Tan, I've been on Pembrolizumab every 6 weeks since August 25, 2020. I didn't miss work from these infusions. I have some arthralgia in my hands, but it does not limit me. Side effects can be wide ranging. A low level of fitness or comorbidities can exacerbate side effects. As for help from my husband, I appreciate when he listens to my fears, worries, joys. I do have good news, that I've had an excellent partial response in 4 lesions, and complete response in the other 6. 

Best wishes to you and your husband!

Cindy

Hi there, I'm currently caring for my Dad who sadly has stage IV melanoma, he started on target therapy but moved onto immunotherapy recently, he's had 4 double doses to start with 3 weekly of nivolumab and has now been  moved onto 6 weekly single doses, hes become more symptomatic over the last 2 weeks im wondering if this is because of the longer gap between treatments, pls may I ask if you experienced  this when you first moved from 3 weekly to 6 weekly immunotherapy treatment thankyou,  

Hi sars1, it sounds like your saying your Dad has had 4 doses of ipilumamab and Nivolumab, and is now on Nivolumab only, and the frequency of Nivolumab has changed from 3 weeks to 6 weeks. I’m a little confused as I thought Nivolumab was given 2 weekly and decreased to 4 weekly intervals. I have not had ipilumamab, but have had Pembrolizumab only which was 3 weekly and decreased to 6 weekly intervals but double the dosage. Nivo and Pembro are very similar though.

I found on 3 weekly treatment and 6 weekly, that I have more energy the further away from treatment. I am at half pace for 4 days and then it as if I slowly build up more energy and felt normal in the 3rd week. With 6 weekly the 4 days stayed the same and I have longer feeling normal. Symptoms of the disease itself, is a bit more difficult to reply to as I currently have low burden of disease, at times when I have left something it’s because my walking has been effected, sometimes a bulge will appear and in the 2 weeks waiting for a scan it will shrink again. When one node did not shrink any further but was still enlarged it was surgically removed and tested and melanoma was found to be dying still. I had a short pause in treatment due to covid risk last April and started back straight into 6 weekly treatment, I have 4 nodes that seem affected but the 4 have differed new ones increasing while previous ones are back to normal, some are nearer the surface and can be felt, others have been near muscles hence me feeling a difference when I walk. 

If something changes with in the 6 weeks I’m always encouraged to call my nurses, they can then discuss with the oncologist and bring forward an appointment or scan. I’m overdue a scan at the moment though due to this current peak in covid, but when treatment was suspended and I felt a changed they moved quickly to check on things so I have a lot faith in my team. 

You haven’t said how your dad is feeling or where he’s affected, but I hope he feels he can talk to his cancer nurses whenever he needs to.

Hi. My husband also has stage 3C melanoma. He had a lesion on his neck (which actually looked nothing like a melanoma should) and unfortunately micro satellites and lymph node involvement. He had a neck dissection in January and just started his immunotherapy with pembrolizumab a week ago and is scheduled for every six weeks for 12 months. So far he has not had any side effects so fingers crossed. It does seem to vary a lot from person to person. It is very hard to know what to do to support someone you love facing all this. Initially we both tried to put a very positive face on everything with neither admitting our concerns and fears to the other. Our nurse specialist was very good in guiding us towards a more honest dialogue. We  don’t want to spend our lives talking about melanoma and treatments but recognise that it is inevitably a large part of our lives right now so both of us know we can talk about it whenever we need to. I guess everyone has different ways of dealing with things and I am sure you will be an amazing support for your husband. Be there to listen, have a laugh when you can and you look after yourself too. I wish you both well on the journey. Do let me know how you get on. X