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- August 4, 2017 at 5:46 am
Thank you all for your wonderful wishes. The choices I made and inspiration I received during this journey were all due to the advice passed on by you guys. It worked and THANK YOU. Love to all. I stay in South Africa and am now looking forward to a 3 month visit to my son and his family in Australia.
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- July 28, 2017 at 7:31 am
Hello Mike. Just to share my personal experience. My history is on file. I had Melanoma in the middle lobe of my right lung in 2010. Primary was a mole behind my right ear removed in 2006.Bot were surgery resected. It spread to my stomach in 2015. Six months later it re-occurred on the same lobe and a furher op was done over the same scar to remove it. Both tumors were in the region of 5 to 7 cm long x 2 to 3 cm wide. Due to its size my stomach was totally removed. I lost 35 Kg in the process. I was put on a course of Interferon for 3 months bjut despite that in 2016 it progressed to a 7cm by 5cm tumor that attached itself to my Pancreas, Colon and Spleen. The spleen was removed and portions of my colon and pancreas were removed in November 2016 resulting in a hospital a stay from 23/11/2016 to 3/1 2017 (spending Christmas and New Year there. Horrible! Despite that a post op pet scan indicated a further 3 spots in my stomach area lining. I just finished a course of 4 IPI infusions every 21 days. Melanoma is a very tricky devil. Your question is related to the op itself, I can assure you it is a major operation cut the cut id long (about 14cm from behind your shoulder blades to close to your stomach, They do have to crack a rib (3 times in my case) to enable them to access the lungs. Your lungs are deflated and you are put on a occurring but this is more of an irritation for 2 days in my case as my lungs failed to inflate at the second attempt, I did not experience any significant pain discomfort. I spent 2 1/2 weeks in hospital on both the lung ops and stomach op. The last one in Nov 2016 was the worst as my Colon developed a leak and a serious infection resulting in the long stay. As of today I am very well with only the side effects of the IPI still manifesting itself. Had a Pet Scan yesterday to see whether or not the last 3 spots have disappeared. The op was the best option but be aware that in my case it was not a cure but it has extended my life dramatically. I feel very good despite all the drama. I really wish you well and pray that you have a successful op and a good recovery. No one can predict whether or not it will metastasize but that is a risk one has to take. Please do not for one moment let my response influence any decision you take. This as my personal experience and the bottom line is that it effects every one differently. Good luck and God bless you and all other members on this forum. We all fight the same battle and we will win!
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- July 31, 2018 at 7:22 am
Hi everybody. So grateful for all the replies. You have no idea what a burden has been lifted as the oncologists seem to circumvent your qu0estions and you never really get the real issue out of them. Once I have my next test results I will certainly post them to prove a point that NED means NED Thank you everyone.
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- April 11, 2017 at 9:23 am
I do not think anyone can say with certainty that it will not re-occur.
My personal experience is that I had a mole removed from my right ear in 2006 which was in-situ. I was assured this was totally clear and no recurrance would manifest itself.
In 2011 I developed melanoma in my right lung (mets) and had the middle lobe removed.
In 2015 it spread to my stomach and they removed my stomach in total
In 2016 it spread to my Pancreas / Colon and I had major surgery to remove it.
In 2017 I had a scan to monitor the healing process ind another three tumors were detected.
Further operationbs are no longer an option. I am now on IPI
So, I would be pretty circumspect.
Regards
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- March 19, 2017 at 3:54 pm
Thank you Judy. I note that your husband has been NED for over 4 years now – was this as a result if the IPI?
That sounds fantastic – gives me hope for a total cure. I have been fighting this beast since 2006 and need to get rid of it now.
God is our saviour.
All the best
Wally
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- March 19, 2017 at 7:25 am
You guys are all fantastic with your responses. I am quite overwhelmed and quite emotional as I have been through much drama the last 18 months and now this place where surgery to remove the tumours is no longer an option. Previously they were single and could easily be resected. Yes, they are trying to get authority for the IPI / Nivo combo. I am hoping to get a response in 2 week's time. I take it the whole process will then take about 150 minutes? Wow, that is a long time but probably worth it. I was on Interferon for 3 months last year and the side effects appear to be much the same. Currently I am on some Hormone treatment involving an injection every 3 months.This seems to make me suffer a mid life crisis as I have tremendous heat build-up in my body when I sweat quite protrusively for a minute or two – very disturbing at night as it seem to occur every 60 to 90 minutes interrupting my sleep severely – followed by cold jitters before it all calms down until the next session starts.
Anyway, once again thank you for your fantastic input. I did a Google search but needed to know what to expect through the experiences of other people.
Kindest regards to you all
Wally
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- November 12, 2016 at 3:30 pm
Hello Deb
Thank you so much for responding to my post. I really appreciate it. I suspected what the issue was but needed to hear from an unaffected person. I was out of town this past week so could not thank you earlier. I will only now know on Monday next week what the treatment will be going forward as I got back too late on Friday to make contact. Anyway, there is really no rush – been there, done that as they say!
I will post their decision sometime next week. Thanks once again.
Keep wel and regards
Wally
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- November 12, 2016 at 3:30 pm
Hello Deb
Thank you so much for responding to my post. I really appreciate it. I suspected what the issue was but needed to hear from an unaffected person. I was out of town this past week so could not thank you earlier. I will only now know on Monday next week what the treatment will be going forward as I got back too late on Friday to make contact. Anyway, there is really no rush – been there, done that as they say!
I will post their decision sometime next week. Thanks once again.
Keep wel and regards
Wally
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- November 12, 2016 at 3:30 pm
Hello Deb
Thank you so much for responding to my post. I really appreciate it. I suspected what the issue was but needed to hear from an unaffected person. I was out of town this past week so could not thank you earlier. I will only now know on Monday next week what the treatment will be going forward as I got back too late on Friday to make contact. Anyway, there is really no rush – been there, done that as they say!
I will post their decision sometime next week. Thanks once again.
Keep wel and regards
Wally
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- October 9, 2016 at 5:32 am
It probably differs from person to person but in my circumstances blood count tests mean zilch. In 2011 I had a melanoma tumor removed from the middle lobe of my right lung. The primary was a mole behind my right ear lobe which was removed in 2006. The histological report indicated In Situ Melanoma with clear margins. Apart from the usual scans and x-rays every 6 months thereafter I also had blood tests. In 2015 the blood test, as usual, indicated no cause for alarm and I was told that I could reduce my visits to annual as I was considered NED. What a relief!. Two weeks later I developed severe stomach cramps in my stomach with blood in my stool. I was tested for a hernia, heart disease, reflux – you name it, I was tested for it. It got to the point where a scope had to be done and I was told I had an unusually large stomach ulcer. Luckily the surgeon who did the scope had a sample biopsied for "just in case" The blood he tested at that stage was also tested or a PSA reading at my request as I had never had this tested before. Prostate cancer was detected and while I was waiting to be discharged from hospital after a Brachytherapy procedure on my prostate, the surgeon rocked up to inform me that what was thought to be an ulcer was, in fact, a melanoma tumor in my stomach. The result was total removal of my stomach as the tumor was 7×4 cm so they could not remove it in isolation.I had chemo for 6 months and so far am NED. I lost 30 Kg in the process since November last year. I have not gained any weight since then.
So, in my opinion and my personal circumstances blood count cannot be relied on in isolation and I now insist on full pet scans / MRI / X-rays every 6 months.
I am not saying the same will apply to you as I do believe that in countries other than South Africa the tests are probably more sophisticated than ours. We do not, as far as I have been able to establish, have any Mel Specialists in this country, only ordinary Oncologists who deal with all facets of cancer.
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