Treatment

Hi Belle

I have been reading your story so far and wanted to say how sorry I am to learn you are now in this situation. Try and concentrate on the positives (I know easier said than done) but you now have a treatment plan and family and friends to support you, a good flexible employer and lots of people on here who can advise you on immunotherapy as they are going through this or have gone through and are now able to live their lifes with NED. 

When I was diagnosed in 2016 also at 1B it was also on my birthday and my sister was diagnosed with breast cancer the same week on her birthday so yes it sucked. I had treatment but my sister declined but she is here and doing ok. I also lost my job due to an uncaring and unsympathetic employer. I tell you this not to detract from what you are going through but everyone has their struggles but we get through and I am positive you will and one more important thing is you have your son who will definately keep you level headed and determined to get through this.

Sending you virtual hugs :0)

I'd just like to echo what has said .

You sound like you have a very supportive network of friends and family who will give you all the help you need to get through this. Also there's all your new friends here who will be able to share their experiences with immunotherapy drugs and give you support.

It sounds like everything is moving along smoothly and hopefully it won't be too long before you begin to see a positive response to the drugs.

Sending my very best wishes

x

Hi Belle, so sorry for your situation you are in but pleased all is moving along for you , My melanoma spread from my first one which was removed 4 years previously, even tho I had  sentinel node biopsies. I started with the combination immunotherapy, 4 doses and coed really quite well upto 3/4 th one , slight rash and tiredness for few days after treatment but then ok, the treatment has damaged my pituitary gland but I’m on medication and feeling ok, I was quite fit before all this started and I am 20 years older than you, but have an extremely good network of friends and amazing family who have all rallied round me and kept me busy as I’m sure your little boy will do and it sounds like your family will too. Also sounds like you are lucky with your work, my work have not phoned me once since I was diagnosed, my close work colleagues have kept in touch but management haven’t . Massive hugs sent your way and you can always pm me.x

Hi sorry to hear your news. I have had the ipi and nivolubab for the four times and I have heard some people have bad reactions but I didn’t .My side effects were a slight rash on my body and itching .Also I had and still have muscle and joint pain .Neither were too bad. I took an antihistamine for the itching and put up with the joint pains and just tried to be as active as I could. I took early retirement before this happened so I was lucky I didn’t have to get up for work. I met a person who I became friend with who only had 2 treatments due to bad side effects mainly diarrhoea.

I am now on the single treatment of Nivolumab every 4 weeks. My tumours have shrank by half but one was very large to start with. I am due a scan in 10 days and like everyone worry about the results but this time I am going to try and think positive as the scan is there to help me.I try to make the best of every day and feel I have become a better and more understanding person since this has happened to me.I still have my moments however thinking why have I been the unlucky one as I never sunbathed or used a sun bed but I do have lots of moles.I hope like me and lots of others that your side effects ,if any are slight. I will be thinking about you .Also take all the help you can get and try to have sometime for yourself.

Hello Belle, well how lovely that you have had a few replies already from people who have had the combo Ipi Nivo. 

The medics can not tell who the Immunotherapy drugs will work on, or who will have a bad reaction to them. There is a melanoma patient conference video that talks about the side effects and remission %. I will put the link in at the end.

i am having Pembro which works on PD1 just like Nivo but is by a different manufacturer. I being in my 50s and not in the best fitness when I needed Immunotherapy it was reckomended to me to have the single treatment, with the option of stopping over to IPI if it didn’t work and if I was well enough. My side effects the first time was an all over body rash, but ceasing for an extra week and having antihistamines stopped that, and every time I took it I felt really tired for about 4 days which by the end of the first year came down to 2 days as I worked on getting fitter, I stopped treatment after the year as I was clear, as my consultant was going to be doing a trial later with people finishing at a year as long as they had been clear for 6 months, the thought being that the trial had been for 2 years, but that Ipi worked on 4 doses, so perhaps Pembro didn’t need to be for 2 years. I believe 7 people at my hospital stopped and after one year of no treatment and remaining clear mine unfortunately came back but was caught early, so I’m back on treatment, and will probably do the 2 years this time. I dislike the 3 weekly yo-yo of feeling tired, getting more active and repeating it all over again, mainly because I had a great year off all treatment. A 4 weekly regime seems more natural and less time to have off work which wasn’t a consideration for me, as I was not working at the time of diagnosis. I just went with what the consultant recommended for me and I trusted her judgment and still do, the combination wasn’t available to me at that time and from what I had read of Ipi on its own, I felt Pembro was less risky. 

I don’t think you will hear anyone saying they would have preferred the other option no matter which option they have chosen. 

The link I promised

Dr Neil Steven - Melanoma Patient Conference June 2018
Adverse events and the short or long term impact some of them have upon patients :
https://youtu.be/3R3SFrNTCQk

I hope this helps 

Morning 

How are you today?

I know that you said your employer is being very supportive and that you can take time off/rearrange your days at work to suit but you might be interested in this information from Macmillan regarding work and cancer. Amongst other things it tells you about legislation that protects you against discrimination or unfair treatment at work while you're having treatment.

Best wishes 

x

Hi Belle4290

I am unusual in that I had Ipi on its own, which is not one of the options that has been offered to you but was the standard treatment in early 2015. I thought I would reply because you are considering whether or not to include Ipi.

Combining Ipi with Nivo gives the highest response rate possible at the moment. The combination is your best chance of being a responder to immunotherapy.

Adding in the Ipi does increase the risk of serious side effects. I was fine on Ipi, with only mild side effects, until after my fourth infusion. I then developed one of the rare (1 in 100 of those treated), serious, side effects. My anterior pituitary gland was permanently damaged, which means I an missing many hormones and this does affect my quality of life. On the other hand, I was a complete responder. I have had no evidence of melanoma for three years.

Not all Ipi complete responders have permanent side effects. Most are fine.

In my eyes, that is Ipi in a nutshell - more risk from side effects but a chance you will be a complete responder to Ipi like me and, when combined with Nivo, a higher response rate.

Treatment has moved on over the last three and a half years. Oncology teams are better at picking up side effects earlier. If you start the Ipi/Nivo combination and it looks like Ipi does not suit you, the team will stop the Ipi and move you onto the NIvo-only part of your treatment plan sooner.

I worked part time throughout my treatment and since. I would not have been able to look after a two-year-old as well. However, this may be because I am in my mid-fifties.

All the best

Interested in how you are doing now.

Very interesting link. How are you doing now?

I’m doing ok Thankyou Sunnymeads, I’ve been on Ipi/nivo x4 then on 4 weekly infusion of nivo, had my 9th single dose yesterday, so very tired today, generally wipes me out for around a week. Last scans showed I remain stable, so life is good. X