› Forums › General Melanoma Community › Hope for my Dad? – Australia
- This topic has 21 replies, 5 voices, and was last updated 10 years, 2 months ago by
ed williams.
- Post
-
- March 12, 2015 at 6:11 am
Hi All,
Firstly, thankyou for taking the time to read my post and for sharing your personal stories on this forum.. it is immensly helpful for me in this time of need.
I am after advice for my father who is stage IV melanoma. A little background:
2005 – Melanoma discovered in heel of foot, large part of the heel is removed and lymph nodes in legs and groin are removed as a precautionary measure.
March 2014 – Woke up unable to move left side of body properly. Taken to emergency to find brain tumour and multiple mets in stomach and in lungs.
Brain tumour is successfully operated on and removed. Round of radition is undertaken to make sure it is all gone (has since not returned).May 2014 – Yervoy/Ipilimumab round started.
Nov 2014 – Yervoy/IPI is not deemed not successful and more mets develop in stomach.
Dec 2014 – Taken to hospital with extremely low blood count. Large tumour in stomach is bleeding and stays in hospital for 16 days to undertake radiation as surgery is not as option with blood levels topped up daily. Tumours now found in intestines.
Jan 2015 – Stomach tumour is still bleeding but has slowed down and blood levels stay high for longer periods of time. Extreme pain in shoulder reveals a large tumour inside the bone and radiation round is started to help reduce pain.
Early Feb 2015 – We are extremely lucky to be given access to PD-1 Nivolumab which is not listed on the PBS (Australia's version of the FDA) based on compassionate reasons as oncologist said we dont have many other options.
At this stage he is not eating a lot at all and has woken up multiple times with severe pain attacks in the stomach and back. We are told that testing for PD-1 success will not take place until the end of the treatment (which i believe is still an excrutiating 10 weeks away) but tumours are now visable through his skin in his back and also on his stomach that the oncologist said is in his liver. My dad said he is feeling better overall but with tumours still obviously growing (fast!) my question – is there still hope that he can have a reaction to PD-1? He has recieved at least 4 doses of the drug on a weekly basis and I would like to know what everyones experience has been with reaction time and if there are any tell-tale signs that it is working?
During this process I have fallen pregnant with my first child and my fathers first grandchild. It is definately challanging to go through one of the saddest and happiest times of your life at the same time but all in all we are very positive and thankful for this special time we have.Thanks.
- Replies
-
-
- March 12, 2015 at 12:05 pm
Is he BRAF positive? You haven't mentioned it. If so, the BRAF+MEK combo is a great plan B, with fast responses and in some cases with several years duration responses (it is still under investigation). Ask your oncologist.
-
- March 12, 2015 at 1:59 pm
Wow. Hopefully it works good. After my second dose of keytruda pd1 I started feeling better. I receive it every three weeks. After three doses they did a pet scan showing 19 tumors shrinking 4 staing same and 7 growing. Other than felling better and a hopeful deep belief it was working I really didn't notice anything to say it was working. The three visible tumors seemed to stay about the same size except the one on my head for a while seemed to shrink and grow on a daily basis.
Artie
-
- March 12, 2015 at 11:36 pm
Thanks for your reply Artie and great to hear that you had a mainly positive response to your treatment. My dad also started feeling better after a few doses of the treatment however I don't quite understand why they can't give him a scan now to see if the treatment is working instead of waiting until the end of the treatment but I suppose we will just have to wait and see.
-
- March 12, 2015 at 11:36 pm
Thanks for your reply Artie and great to hear that you had a mainly positive response to your treatment. My dad also started feeling better after a few doses of the treatment however I don't quite understand why they can't give him a scan now to see if the treatment is working instead of waiting until the end of the treatment but I suppose we will just have to wait and see.
-
- March 12, 2015 at 11:36 pm
Thanks for your reply Artie and great to hear that you had a mainly positive response to your treatment. My dad also started feeling better after a few doses of the treatment however I don't quite understand why they can't give him a scan now to see if the treatment is working instead of waiting until the end of the treatment but I suppose we will just have to wait and see.
-
- March 12, 2015 at 1:59 pm
Wow. Hopefully it works good. After my second dose of keytruda pd1 I started feeling better. I receive it every three weeks. After three doses they did a pet scan showing 19 tumors shrinking 4 staing same and 7 growing. Other than felling better and a hopeful deep belief it was working I really didn't notice anything to say it was working. The three visible tumors seemed to stay about the same size except the one on my head for a while seemed to shrink and grow on a daily basis.
Artie
-
- March 12, 2015 at 1:59 pm
Wow. Hopefully it works good. After my second dose of keytruda pd1 I started feeling better. I receive it every three weeks. After three doses they did a pet scan showing 19 tumors shrinking 4 staing same and 7 growing. Other than felling better and a hopeful deep belief it was working I really didn't notice anything to say it was working. The three visible tumors seemed to stay about the same size except the one on my head for a while seemed to shrink and grow on a daily basis.
Artie
-
- March 12, 2015 at 9:17 pm
Where are you in Australia? The team at west mead in Sydney are amazing. It sounds as if it is working. I think how you feel is the best indicator. As my oncologist said. You have to imagine if u have a million cancer cells in there and then a million immune cells go in to fight it, there will be a big flare up before it settles down. I hope for you and your dad that that is what is happening here. An infusion every week seems pretty intense, so hopefully it will knock the cancer back and give you some time to work on it and enjoy time together looking forward to the birth of your child. Congratulations!
-
- March 12, 2015 at 11:41 pm
Thank you Jubes, we are in Brisbane. I would definately look into treatment options in Sydney if it looks like we have exhausted all options here. I like the way your oncologist describes what happens when a million immune cells go in the fight a million cancer cells, I will definitely tell my dad this one :).
-
- March 12, 2015 at 11:41 pm
Thank you Jubes, we are in Brisbane. I would definately look into treatment options in Sydney if it looks like we have exhausted all options here. I like the way your oncologist describes what happens when a million immune cells go in the fight a million cancer cells, I will definitely tell my dad this one :).
-
- March 12, 2015 at 11:41 pm
Thank you Jubes, we are in Brisbane. I would definately look into treatment options in Sydney if it looks like we have exhausted all options here. I like the way your oncologist describes what happens when a million immune cells go in the fight a million cancer cells, I will definitely tell my dad this one :).
-
- March 12, 2015 at 9:17 pm
Where are you in Australia? The team at west mead in Sydney are amazing. It sounds as if it is working. I think how you feel is the best indicator. As my oncologist said. You have to imagine if u have a million cancer cells in there and then a million immune cells go in to fight it, there will be a big flare up before it settles down. I hope for you and your dad that that is what is happening here. An infusion every week seems pretty intense, so hopefully it will knock the cancer back and give you some time to work on it and enjoy time together looking forward to the birth of your child. Congratulations!
-
- March 12, 2015 at 9:17 pm
Where are you in Australia? The team at west mead in Sydney are amazing. It sounds as if it is working. I think how you feel is the best indicator. As my oncologist said. You have to imagine if u have a million cancer cells in there and then a million immune cells go in to fight it, there will be a big flare up before it settles down. I hope for you and your dad that that is what is happening here. An infusion every week seems pretty intense, so hopefully it will knock the cancer back and give you some time to work on it and enjoy time together looking forward to the birth of your child. Congratulations!
-
- March 13, 2015 at 1:26 am
Hi Aus123, early research with PD-1 showed shrinkage of tumors by the first set of scan usually around 8 weeks for many of the test subjects. In my phase 3 trial they have moved the scan date back to 12 weeks for the first scan. They say that most people show responds by that point but some people can have delayed responses after a longer period. I follow posts of " Melanoma Institute Australia " on face book and also I guy named Jay Allen who is very active in the fight to get Melanoma awareness out to the general public in Australia. Wishing you the best in your search for answers and treatments. Ed
-
- March 13, 2015 at 1:26 am
Hi Aus123, early research with PD-1 showed shrinkage of tumors by the first set of scan usually around 8 weeks for many of the test subjects. In my phase 3 trial they have moved the scan date back to 12 weeks for the first scan. They say that most people show responds by that point but some people can have delayed responses after a longer period. I follow posts of " Melanoma Institute Australia " on face book and also I guy named Jay Allen who is very active in the fight to get Melanoma awareness out to the general public in Australia. Wishing you the best in your search for answers and treatments. Ed
-
- March 13, 2015 at 1:26 am
Hi Aus123, early research with PD-1 showed shrinkage of tumors by the first set of scan usually around 8 weeks for many of the test subjects. In my phase 3 trial they have moved the scan date back to 12 weeks for the first scan. They say that most people show responds by that point but some people can have delayed responses after a longer period. I follow posts of " Melanoma Institute Australia " on face book and also I guy named Jay Allen who is very active in the fight to get Melanoma awareness out to the general public in Australia. Wishing you the best in your search for answers and treatments. Ed
-
- You must be logged in to reply to this topic.