Immunotheropy

Hi Sorry to hear about your husband. It is a lot to take in especially in these times.  However for a positive story I can say immunotherapy has saved my life. I had a very high tumour burden as a result of a misdiagnosed mole years ago. I have had ipi and Nivolumab for the four treatments and now am on Nivolumab every four weeks and was told I can have it indefinitely. I am now well and only feel tired after the infusion and lead an almost normal life for me. I am retired but active and go away for a few days every month with my husband. We have managed this even though these awkward COVID times. 

I was initially frightened by COVID and my treatment was stopped for a few months. However I decided to live to the full and continue as much as I could as normal. Everyone handles COVID and this disease differently but once over the shock and anger I decided to get on with life visiting friends and walking a lot.

If these treatments work they are amazing  If one doesn’t agree with you there are other options. I took dam trab tablets for 7 months and they shrunk my tumours and the one in my lung and near my spine disappeared.There are side effects but everyone is different  With the tablets my hair thinned and I was always cold and had the shakes at times. 

With ipi I developed vitiligo and still have it  I developed a slight rash but nothing antihistamine cream and occasionally steroid cream dealt with  Now it’s just tiredness after infusion. Sometime it is hard for the nurse to put the cannula in my hand so I would recommend drinking something before hand and keep your hands warm .

Sorry if I have gone on and on but if you have any questions I would gladly help and other people on this site have been so helpful to me.  

I attended my local cancer centre at first with mixed results  I had massage as I developed lymphodema and that was fine but didn’t enjoy the talking about my condition to a councillor as at the time I wanted answers not someone to listen to.

I do wish you well and I do know how shocked and scared you must feel  Once treatment starts you get into a routine and things become easier.

be ventral

Sorry should say take care and try to enjoy Christmas 

Hi,  Thank you so much, you are the first person to reply since I joined this site earlier today, and I really do appreciate you taking time out of you day to offer me support! Bless you.  I'm so pleased to hear that you have responded so positively to treatment and that you have found such a positive outlook, thats really encouraging, also for the tips re drinking and keeping hands warm, I will tell him!

To be honest, we have been told that Immunotheropy for him can only be given for 2 years? (If his body accepts it), he will have 12 weeks of both drugs, then monthly doses of 1 drug. I believe theres a 50% chance that he will respond to the medication, and then of that 50% who do, 15% can live for possible 5-7 years and in very few cases up to 10.  I know I should be grateful and there will be people who have no warning and much less time, but we had so many plans for retirement and seeing our children graduate, its just so heartbreaking.  I cant imagine my world without him, and I know I need to find the strength for my children.

The oncologst told my husband that he has identified the swollen lymph node quickly and he conisders this a 'low level' case and has seen much more advanced cases benefited from Immunotheropy, though definitely only given for 2 years, and then you just see how long you have (I'll look into this more I think)

We werent told this as stage 4, just that it was incurable although Immunotheropy can in some cases reduce if not destroy the melanomas, but I take it its just a waiting game until they come back?  I suppose I need to look into whether you can posisble have a second/third course of immunotheropy if needed as well? and how regular PET scans can be completed to identify growth early?

Do you have regular PET Scans to monitor progress/improvement or new growths? 

Anyway I am clearly rambling as I'm thinking, thank you again and I do hope you have a lovely christmas and new year! Take care xx

Hi I think you are looking too much into statistics. My tumour burden was very high  I don’t have regular pet scans because initially the tumours were so big it was a waste of resources. However I had one a year ago  and most tumours had disappeared .There was 2 near my kidney and they were unsure whether they were both dead or not. To be on the safe side I was to continue with immunotherapy. I have had 3 CT scans since and no progression. I am in no rush for a pet scan as am happy with the treatment I am given. I have had no new growths since immunotherapy and my tumour near my kidney was over 15 cm not mm The ipi and  is challenging but as I said before different people have different side effects. 

Try to live each day and get enjoyment out of now. We all can’t look into the future Take care 

Thank you, I appreciate your support, all the very best for the future xx

Hi GLC,  I've just had my fifth dose of Pembro (one of the many immunotherapy drugs) and apart from increased tiredness and a little constipation I've been fine.  The quality of life is easier to maintain on these drugs provided you have few side effects.

I'm not sure what percentage of people do have side effects but it's certainly more gentle on the whole than the chemo all the others are having for their various cancers when I go in for my treatment.

I believe there are a few people on here who have quite a tumour load and have also had good results, hopefully they'll pick up your thread and give you some positivity.

Take care and remember one day at a time and no googling on the computer, very scary and it always reliable info on there. X

Hi Alottment lover, thank you so much, having only been on here for a couple of days I can really say that speaking to kind hearted and supportive people such as you has really helped, I even managed to be supportive to someone else and that actually made me feel a little better too.  

I'm so pleased that you aren't finding the treatment too overbearing, and I hope that you stay well for a long as possible.  

As you say one day at a time, none of us have a guarantee of how long we have, this just highlights how people should always live, for the day, I just wish it hadnt taken this to drive that point home!

Take care and thank you again xx

Hello. I was diagnosed with stage 4

Hello I was diagnosed with stage 4 melanoma February 2019. The short version of my story is I only tolerated 1 dose of immunotherapy as I developed ulcerative colitis which after two months and trying various treatments, resulted in me having a stoma via open surgery. I didn’t have a mole and only discovered I had melanoma when I went to the doctors when I discovered a large lump in my armpit. Almost 3 years on I have no evidence of disease and still having scans every 4 months. Although I did suffer an extreme side effect, the oncologists have said I had a good response to immunotherapy. Please feel free to ask me any questions. 

Hello Laydeh,

Thank you for getting in touch and sharing your experience, I really appreciate your support, OMG sounds like you went through the mill, though I'm so relieved that you have seen such positive results even after one treatment!

My Husband did have a malignant mole removed early last year, and after surgery the PET scan and check ups didnt identify anything, until he found a lump in his neck (Apparently not where it would have been expected to present so never formed part of the 3 monthly physical checks).  

Unfortunately by the time he found the lump it has spread (Albeit in small number for now) to his lungs and is now stage 4.  I'm desperately hoping that my husband responds to the treatment also so we can have as long as possible together and with our children.

You mention your cancer was also stage 4, can I ask if you had any spread to other organs as well as in the armpit? Please don't feel you have to answer if you would rather not, I'm just curious given my Husbands locations of melanomas, though I do understand everyones response to medication is different.

Take care xx