› Forums › General Melanoma Community › my sister – a treatment update | some reflections
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sister of patient.
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- April 20, 2016 at 6:24 am
Hello and best wishes to every member on this board and their families.
I thought an update on my sister might be mutually helpful. Here's a quick rundown:
– started on Taf/Mek combo in Feb. – I posted then about fevers and other side effects she was experiencing
– she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything – dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek – none of that worked
– the culprit that ended treatment was the rash she developed – a grade 3 and also considered an allergic reaction (rashes seem particularly complicated) – her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone
– flipside of that is that the drugs were amazing – they were absolutely causing the mel to retreat and disappear – we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap
– 4 weeks later, first signs that mel was on the move again became apparent
– 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours – there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)
– good news was that CT results did not reverse plan to start immunotherapy
– first infusion was last Thurs. (Apr. 14) – she was immediately extra fatigued and slept on and offer for the remainder of the day
– day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)
– has remained as above since, on and off – headache, fever, vomited today but this was only day 6
– several of her growths went crazy for a couple of days but one has already started going down again – have read on here that it's quite common – they are sore and painful though
– so far no rash, which is great!!
– I know it's early days yet – treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo — we also won't be surprised if she isn't able to complete all four
She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy.
If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects – what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments – she went from being an active gym member last fall to the point where she was issued a walker last month.
In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go … and sick and tired of being sick and tired …
Onto some reflections … I've been on here all day – it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.
A couple of posts struck me today – one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.
The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 … and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today …
I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa – I read everything you post – thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.
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- April 20, 2016 at 7:14 am
My advice is to make sure your sister is getting adequate nutirtion. Don't let her skip meals – a meal can be a high-calorie drink.
I never though I would, but I bought a juicer (slow, cold press) when recovering from the side effects of Ipi and it really helped. However she will probably need you to juice the fruit and veg but she could sit in the kitchen and give you directions. Finding out what she likes would be fun. I love freshly juiced carrots.
Would her talking to a professional help? Maybe a psychologist or a counsellor? What about a specialist melanoma nurse? Do you have access to one of those?
Laughing helped me. You could watch a light hearted film together. or a series of her favourite comedy programme.
I do not know what part of the world you are in. I an in the UK. In the winter the nights are very long and the days short. I bought a SAD light. This broke the back of my depression in December 2015 and made me more capable of taking positive decisions.
Also make sure her immediate environment is as nice as you can make it. with an emphasis on comfort. If she complains that those things are for 'old people' tell her that it is only temporary.
When I was at my worst I gave in an got a stool for the shower. I cannot tell you how much I enjoyed that shower when I wa no longer worried about falling over!
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- April 20, 2016 at 6:58 pm
Thank you so much Moira – so many great ideas you've put forth!! A juicer could be just the item we need as I worry she's not getting enough good stuff in there! And a SAD light is a great idea too – mind you Spring has finally touched down here (we are in Ontario, Canada) – wish we'd thought of that a few months ago.
She's had a stool for the shower from the get-go – her first sign that mel was back was when it fractured through a vertebrae in her back in December. I stayed with her for a few months to help her manage because her pain level was very high but had to come home in mid-march so I'm not there to see how she is now day to day, though we speak on the phone.
I went to great lengths to speak with some her med. team about getting a psych consult (felt guilty – had to go behind her back but really felt it was the right thing to do) – it was arranged for last week but landed in between prep day for treatment and the actual first treatment date, so, her onc thought three days of going out would be too much for her and they took it upon themselves to postpone that one.
I've read many of your other postings too Moira and they are always worthwhile!! Thank you so much for the great advice!
Best,
Barb
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- April 20, 2016 at 6:58 pm
Thank you so much Moira – so many great ideas you've put forth!! A juicer could be just the item we need as I worry she's not getting enough good stuff in there! And a SAD light is a great idea too – mind you Spring has finally touched down here (we are in Ontario, Canada) – wish we'd thought of that a few months ago.
She's had a stool for the shower from the get-go – her first sign that mel was back was when it fractured through a vertebrae in her back in December. I stayed with her for a few months to help her manage because her pain level was very high but had to come home in mid-march so I'm not there to see how she is now day to day, though we speak on the phone.
I went to great lengths to speak with some her med. team about getting a psych consult (felt guilty – had to go behind her back but really felt it was the right thing to do) – it was arranged for last week but landed in between prep day for treatment and the actual first treatment date, so, her onc thought three days of going out would be too much for her and they took it upon themselves to postpone that one.
I've read many of your other postings too Moira and they are always worthwhile!! Thank you so much for the great advice!
Best,
Barb
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- April 20, 2016 at 6:58 pm
Thank you so much Moira – so many great ideas you've put forth!! A juicer could be just the item we need as I worry she's not getting enough good stuff in there! And a SAD light is a great idea too – mind you Spring has finally touched down here (we are in Ontario, Canada) – wish we'd thought of that a few months ago.
She's had a stool for the shower from the get-go – her first sign that mel was back was when it fractured through a vertebrae in her back in December. I stayed with her for a few months to help her manage because her pain level was very high but had to come home in mid-march so I'm not there to see how she is now day to day, though we speak on the phone.
I went to great lengths to speak with some her med. team about getting a psych consult (felt guilty – had to go behind her back but really felt it was the right thing to do) – it was arranged for last week but landed in between prep day for treatment and the actual first treatment date, so, her onc thought three days of going out would be too much for her and they took it upon themselves to postpone that one.
I've read many of your other postings too Moira and they are always worthwhile!! Thank you so much for the great advice!
Best,
Barb
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- April 20, 2016 at 7:14 am
My advice is to make sure your sister is getting adequate nutirtion. Don't let her skip meals – a meal can be a high-calorie drink.
I never though I would, but I bought a juicer (slow, cold press) when recovering from the side effects of Ipi and it really helped. However she will probably need you to juice the fruit and veg but she could sit in the kitchen and give you directions. Finding out what she likes would be fun. I love freshly juiced carrots.
Would her talking to a professional help? Maybe a psychologist or a counsellor? What about a specialist melanoma nurse? Do you have access to one of those?
Laughing helped me. You could watch a light hearted film together. or a series of her favourite comedy programme.
I do not know what part of the world you are in. I an in the UK. In the winter the nights are very long and the days short. I bought a SAD light. This broke the back of my depression in December 2015 and made me more capable of taking positive decisions.
Also make sure her immediate environment is as nice as you can make it. with an emphasis on comfort. If she complains that those things are for 'old people' tell her that it is only temporary.
When I was at my worst I gave in an got a stool for the shower. I cannot tell you how much I enjoyed that shower when I wa no longer worried about falling over!
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- April 20, 2016 at 7:14 am
My advice is to make sure your sister is getting adequate nutirtion. Don't let her skip meals – a meal can be a high-calorie drink.
I never though I would, but I bought a juicer (slow, cold press) when recovering from the side effects of Ipi and it really helped. However she will probably need you to juice the fruit and veg but she could sit in the kitchen and give you directions. Finding out what she likes would be fun. I love freshly juiced carrots.
Would her talking to a professional help? Maybe a psychologist or a counsellor? What about a specialist melanoma nurse? Do you have access to one of those?
Laughing helped me. You could watch a light hearted film together. or a series of her favourite comedy programme.
I do not know what part of the world you are in. I an in the UK. In the winter the nights are very long and the days short. I bought a SAD light. This broke the back of my depression in December 2015 and made me more capable of taking positive decisions.
Also make sure her immediate environment is as nice as you can make it. with an emphasis on comfort. If she complains that those things are for 'old people' tell her that it is only temporary.
When I was at my worst I gave in an got a stool for the shower. I cannot tell you how much I enjoyed that shower when I wa no longer worried about falling over!
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- April 20, 2016 at 7:58 pm
Hi Barb- I am a newbie here so don't have much in the way of advice for you, but I wanted to take a moment to honor your caring for your sister and being there for her through the valleys of this disease. Sisters are so precious- I know mine has been a rock for me already in this very early point in my process.
I have been scouring the posts as well. Everytime there is good news my heart soars, everytime a setback or recurrance I feel devastated. But the information and the community is like a life line for me right now. I go in, (finally!) to meet the melanoma specialists next week and feel like I am reasonably well educated. I just got scan results and I have more enlarged lymph nodes in my neck as well as 2 nodules in my lungs so I may be in for a rough ride. I am hoping a praying the lung nodules are incidental (for now they are too small to biopsy).
Anyway, thank you for sharing and know that there are many people who care and are on your side, and who are rooting for your sister.
Peggy
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- April 20, 2016 at 7:58 pm
Hi Barb- I am a newbie here so don't have much in the way of advice for you, but I wanted to take a moment to honor your caring for your sister and being there for her through the valleys of this disease. Sisters are so precious- I know mine has been a rock for me already in this very early point in my process.
I have been scouring the posts as well. Everytime there is good news my heart soars, everytime a setback or recurrance I feel devastated. But the information and the community is like a life line for me right now. I go in, (finally!) to meet the melanoma specialists next week and feel like I am reasonably well educated. I just got scan results and I have more enlarged lymph nodes in my neck as well as 2 nodules in my lungs so I may be in for a rough ride. I am hoping a praying the lung nodules are incidental (for now they are too small to biopsy).
Anyway, thank you for sharing and know that there are many people who care and are on your side, and who are rooting for your sister.
Peggy
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- April 21, 2016 at 1:25 am
Omigosh Peggy, thank you so much for your really lovely words!! You are so right – sisters are very precious – and I will do everything I can to help my sister through this.
I'm a newbie too so I know how you feel about this board and site. As you say, it is a 'lifeline' and I'd be lost without such a resource. The sense of caring is very strong and that is a real comfort too.
I truly wish you the best possible results as you 'slay this demon' and I'm so glad you have your "rock" as well 🙂
Barb
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- April 21, 2016 at 1:25 am
Omigosh Peggy, thank you so much for your really lovely words!! You are so right – sisters are very precious – and I will do everything I can to help my sister through this.
I'm a newbie too so I know how you feel about this board and site. As you say, it is a 'lifeline' and I'd be lost without such a resource. The sense of caring is very strong and that is a real comfort too.
I truly wish you the best possible results as you 'slay this demon' and I'm so glad you have your "rock" as well 🙂
Barb
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- April 21, 2016 at 1:25 am
Omigosh Peggy, thank you so much for your really lovely words!! You are so right – sisters are very precious – and I will do everything I can to help my sister through this.
I'm a newbie too so I know how you feel about this board and site. As you say, it is a 'lifeline' and I'd be lost without such a resource. The sense of caring is very strong and that is a real comfort too.
I truly wish you the best possible results as you 'slay this demon' and I'm so glad you have your "rock" as well 🙂
Barb
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- April 20, 2016 at 7:58 pm
Hi Barb- I am a newbie here so don't have much in the way of advice for you, but I wanted to take a moment to honor your caring for your sister and being there for her through the valleys of this disease. Sisters are so precious- I know mine has been a rock for me already in this very early point in my process.
I have been scouring the posts as well. Everytime there is good news my heart soars, everytime a setback or recurrance I feel devastated. But the information and the community is like a life line for me right now. I go in, (finally!) to meet the melanoma specialists next week and feel like I am reasonably well educated. I just got scan results and I have more enlarged lymph nodes in my neck as well as 2 nodules in my lungs so I may be in for a rough ride. I am hoping a praying the lung nodules are incidental (for now they are too small to biopsy).
Anyway, thank you for sharing and know that there are many people who care and are on your side, and who are rooting for your sister.
Peggy
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Tagged: cutaneous melanoma
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