Client2573
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Frustrated - 2009/07/21 05:16
I noticed an ugly mole on my partner Shanes back last May 2008 and made him an appointment with the Doc. The Doc removed it then called Shane back in the next day and took a very large cut out of his back explaining to us that he had melanoma but not to worry just make an appointment for a scan then we'll do another in 3 months.
After the first scan he said it was fine and so we just forgot about the scan in 3 months as it did not seem real important. You know just a melanoma on the back, cut it out, it will be right mate.
January this year Shane noticed a big lump above his groin and thought it was a hernia so back we went to find out it was a big crazy lump from the melanoma with some dots under his arm and a couple on his lungs. About 1 month or so later we went to the Mater where they cut the lump out in his groin with all surrounding lymphnodes and then they discovered a heap more under his arm so out they come to. The Doc was pretty happy because he had got all of it and put him in for this exciting new trail.
We were all excited till the next phone call telling us that the little shadows in his lungs were growing and he now has metastic cancer, (Now we are starting to panic because there is some big words and they knocked him back for the trial as well.
So off we go to another oncologist who tells us chemo doesnt help much but we have to try it before we find another trial OR he will be dead by Xmas. Mind you Shane is a 45 year old fit and healthy Carpenter and this is knowcking us for 6.
So he does 4 lots of chemo and now we are waiting to hear about some type of trial. I found one that sounds great in Melbourne called the BRAF trial and they even said Shane could be considered if the Oncologist called them.
I was all excited and forwarded the info to our Oncologist who wrote back and said " it is not in QLD"
and that was the answer. At this time I am really angry and there must be a way to find a good trial her in QLD or you know what anywhere in the world but I just dont know where to go anymore. Shane is still looking normal although the lumps on his lungs had grown a little more every 3 weeks when we attended the Doc which is not good and yes we are starting to panic. His oncologist said to me last Wednesday "I told you he only has till around Xmas so lets not get into a big panic" at which time I felt like screaming well at least give me something positive. we still have not heard anything and am waiting to see if he can find something better.
Any suggestions while we still have time???
Dam I really needed to get this off my chest, sorry all.
Kerren
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Client2177
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Re:Frustrated - 2009/07/23 02:44
Hello frustrated, and you have every right to be. Melanoma is serious business, and I never knew to what extent. I am the "author" of "Lost for Words", which for me, didn't have a great outcome, losing my best friend at her ripe young age of 31. If you are not happy, seek a 2nd, 3rd, 4th opinion, this disease is ruthless, and I am unsure how to support you. Not every story has a happy ending, but I hope for you, that Xmas is not your ending. Will be thinking of you, and please continue to post, as for me, venting helped heaps. Be strong/stay positive, sometimes easier said than done, but at the end of the day, you need all your strength to get through this. Good luck, and my thoughts are with you both. Ang :-)
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Client114
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Re:Frustrated - 2009/07/30 05:30
Hi Frustrated,
Man, I don't blame you for being frustrated. What an incredible turn of events.
I know this probably isn't very helpful, but if I was you I would strangle that doctor! I can't believe how insensitive they can be, putting a time limit on someone's life I mean, but also basically refusing to put your husband forward for a trial because it's not in your state.
I tend to agree with Ange, if you are not happy, seek a 2nd opinion, you never know, you may find a surgeon with a bit of positivity who is willing to fight with you.
Best of luck on your journey and never apologise for venting ;-).
Judy |
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Client2930
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Re:Frustrated - 2009/09/29 14:37
Hi Kerren i understand your frustration as there is nothing worse that wait for answers. I too have been told i have STAGE IV 2 on my liver 1 on my lung and 1 in my 6th rib all i can say to you and Shane is look elsewhere as well as Australia i am currently considering going to the NCI in the States they are wait for my reports and test before being accepted into their system and treatments. The treatments free if you get accepted. Keep faith and keep strong the longer we stay alive the more chance of a cure. Feel free to contact me for help. email: markyjasper@hotmail.com
LOL Mark
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Ris
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Re:Frustrated - 2009/10/06 03:48
Dear Frustrated, Like you I am also frustrated; frustrated that this story seems to be repeating itself over and over and over again. In Shane's case was there a sentinel node biopsy performed? And if not, why not? Surely melanoma deserves tracing to see if it's spread; and when the alternative is to wait and see where it pops up next, that's an approach I just don't understand. I fully appreciate that doctors don't have all the answers but I can't help feeling that not enough is done in the initial stages BEFORE the beast returns. To remove a melanoma and then say come back in 3 months without any further investigation sounds very lax. As patients we need to be vigilant, do our research, get informed, ask questions and if you're not satisfied with the answers then insist on a 2nd opinion. If your doctor has a customer survey sheet then I'd be putting forward some heartfelt and very candid opinions about further training so that future patients are not forced to suffer as you and Shane have. Keep posting and let us know how things are going.
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Client2573
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Re:Frustrated - 2009/10/06 05:20
Hello, Im back and a little more settled than the last time I wrote. About a week after Shanes last chemo the Oncologist rang to tell us that Shane was to be considered for a new trial happening at the PA hospital in Brisbane. Shane went down for a heap more tests and was then told he would be vry suitable for the trial. We met the team and felt very comfortable including being told to forget about the Xmas news and we would start anew. The Doctor in charge also said he would keep something else up his sleeve if this trial did no good so obvously we left the first visit looking forward to some type of future and a dam good chance at Xmas. He has been going to the hospital most weeks if not fortnightly to get injections. He is being injected with something called "Interferon" I think that is the right spelling. They are hoping that this will teach his cells how to fight the cancer cells or something similar. Shane is still looking, sounding and feeling good. He has not had any scans since it started and will not know anything for a few more weeks which has been good in a way because we havent had any bad news and we both feel rather normal at the moment. They say that the results should show over a longer time maybe not straight away, so even if it slows the growth down which was happening every 3 weeks it would be good. And we always have to hope like hell that it does not get into any other organs in the mean time. You know I do sit there and think about what if the original Doctor had of done things different etc but then I think its better to let it go and focus on the future not the past it can only make you bitter. And I think the original Doctor probably thinks about the what ifs too. I havent mentioned that Shane takes paw paw leaf every day, I stuff capsules for him and he takes at least 3 a day and also he eats up to 25 of the apricot kernals (inside the apricot seeds) I DO believe this has a lot to do with why he is going so well.
So fingers crossed that when we get the next results things are better or at least on hold. We just keep thinking positive.
To everyone who has posted messages, thanks alot, it means a lot. And my thoughts are with everyone else going through this, all I can say at the moment is stay postive (and try some alternatives like paw paw leaves, it cant hurt)
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Client2633
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Re:Frustrated - 2009/10/07 17:33
Hi
there are two things he should get tested for now! first is to see if he has the BRAF mutation and 2nd to see if he has the CKIT Mutation. You need to send some tissue sample of the Tumor to get tested. There are Trials being conducted at Prince of Wales in Sydney and The Sydney Melanoma unit if he tests positive for BRAF these new drugs appear to be the most promising drugs available anywhere in the world. The other test for CKIT responds well to another drug called Gleevec.
As far as i understand Interferon is for stage 3 not stage 4 so please make sure your Doctors are up to speed with the new Treatments. The Sydney Melanoma Unit or Perter Macallum in Melbourne are worth calling
best wishes
James
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Client2573
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Re:Frustrated - 2009/11/06 09:03
Well Im back again. Shane has completed the needle part of the trial which was the Genvax trial. The Professor and his team at the PA have been excellent but at this time it does not look like it has worked. The lumps in his lungs are a bit bigger with more now showing under his arm again and now more down on the other side of his groin. I have been trying desparately to organise for Shane to be tested to see if he has Braf mutation but am running into brick walls at the moment, I think its no good getting excited till we at least know if he is positive. I have just finished writing to shanes local Doc to ask him to try contact the Peter Mac and see if he can organise it as they will not talk to the patient themselves only a Doc or oncologist. Does anyone know how you go about making this happen? Shane really wants to go to a hospital in Brisbane and I know that they are starting a Braf Phase 2 trial at the start of next year but they think that because he had Chemo last year he now wont be able to be included. Bugger. At this moment am just not sure where to go next and I have noticed that some-one is not coping as well as he would like to think.
Has anyone out there actually tried one of these Braf trials or the GSK trial in Sydney, is there any feedback anywhere? Anyway wish us luck and I will keep trying to find something.
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Elesha
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Re:Frustrated - 2009/11/08 14:54
Hi,
Please refer to my post on 24/8/09, about the B-Raf trial that my fiance is on at Prince of Wales (Sydney). He has now been on this trial since early July, on his last lot of scans done - disease was stable, which is the next best thing to tumour shrinkage. Apparently most of the people on this trial has experienced the same result.
They increased his dosage of the oral drug after last lot of scans, so we are hoping for the same if not better news with the next lot of scans due this Thursday.
If you would like to get in touch with us, please contact Lisa (at MPA).
Regards
Elesha
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Client2573
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Re:Frustrated - 2010/01/08 06:55
Shane completed the trial at the PA at the end of December and so far it does not seem to have worked as he as more on his lungs, under his arms groin and even black spots that look like dark blood on his stomach.
Although they do say sometimes it may take longer to show anything, never know I guess. We had Professor Smithers and I have to say he and his staff are absolutely fantastic. NOW the good new is that Shane has been tested for the BRAF mutation and he has it. We go for the first appointment this week in Sydney. Hopefully all will go well and they will sign him up. Fingers and legs crossed. This really is his best chance as it is starting to go way to fast.Will keep all posted.
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