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More time for Malcolm

  • Fathers Day

      7 September 2015
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    For me a day here and a day there is not important so let’s call it 365 days (really about 350) since my stage 4 melanoma diagnosis.

    In the words of the first oncologist my life expectancy was months so to see another father’s day on Sunday close to a year later was great.

    I am still working and try to keep active. The blood tests every 3 weeks before oncologist appointments provide the indicators of how the body appears (I use the word appears because it’s not concrete proof) to be progressing. The oncologist is very encouraged by his observations. Of recent times the only negative blood indicator has been low hemoglobin count. This results in low energy (get puffed out) as oxygen is not being distributed around the body. It’s typically resolved for a while with a top up of blood. That’s a small price to pay for good progress.

    I am in line for a scan (that’s when the public health system sees fit to give me an appointment) because this will show if we have had tumor reduction or on the other side expansion. The waiting is frustrating.

    I have a great family network supporting me along with great friends. Believe me a serious diagnosis effects the extended family as much as the patient. We all live with the unknown. My next milestone is a birthday in December followed by Christmas. After that the sky’s the limit (I just might get to see my granddaughter start school in 3 years).

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  • Its been a while since I updated you

      24 July 2015

    I have a saying 'What is is'. Nothing could have stopped me getting this cancer - that’s my non medical opinion.

    Thanks to all the support I have received through 'Give a Little'. I am now a 10 month cancer survivor. In October 2014 my life expectancy was diagnosed as months. The day I went to a consult with my surgeon in September 2014 at which he advised me I had gone to stage 4 and we should be considering palliative care is a long time ago and the road since has had many pot holes - some of them big. It was the follow up consult with the Oncologist where treatment options (or lack of) were discussed that set me and the family on the road to trying the non funded immunotherapy drugs. By early 2015 it was identified that the cancer was also in the gall bladder (identified earlier were multiple lesions in the liver, spleen, right inguinal nodes, anterior left 5th rib with uptake in the left lower chest and left lower back (surgical scar region)). Since February the gall bladder has made life very uncomfortable and has resulted in 2 admissions to hospital (the last one being a month ago). It was during the last admission that they scanned earlier than planned and while they identified that the gall bladder issues had resulted in acute cholecystitis, the tumors in the spleen showed some shrinkage and all else was status quo. It's now been 3 weeks since the cholecystitis was sorted and things are going real well. The previous constant pain attributed to the gall bladder is close to nonexistent and I wake in the mornings looking forward to the coming day. My appetite is back and although I have lost about 9 Kg in weight since April it now appears to have stabalised. I am now planning a return to cycling in the near future.

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  • An update on Malcolm

      28 May 2015

    I had an appointment with the Oncologist yesterday and as for as he can tell by the Blood test results there is nothing out of the ordinary (aside from a life ending disease). One of the tests they pick up in the bloods would show if the Melanoma was mis behaving but that appears to be not the case. I will have my third infusion of Pembrolizumab next Wednesday. I understand that after the 4th infusion (that’s a month away) I will be scanned again. No two days are the same - we can get a couple of real good days however we then seem to get a bad day or 2 thrown in. I am still getting through days at work but by late afternoon I am getting weary and experiencing some discomfort - this may be due to sitting in a work chair.

    Thanks for the continued support

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  • Round 2

      20 April 2015

    The second half of the game starts Wednesday. Yes Wednesday is the first infusion of the Pembrolizumab drug. So how does this differ from the first drug. It goes to work on the PD-1 protein which is on the surface of some T cells. Compared to CTLA-4 (this was the protein the first drug attacked), it seems to be found more often in T cells in inflamed tissues and tumors, where it helps keep the immune response under control.

    There are 2 types of Melanoma, Braf Positive and Braf Wild (negative). The positive responds to treatment far better than the wild (that’s what I have). Luck of the draw and I was unlucky - never could win Lotto.

    Life is getting more difficult - not sure why, given the disease is stable at last scan but the Oncologist believes it's down to the gall bladder issues I have.

    I am still working and going for the odd bike ride.

    The following is a study on the drugs used to treat advance melanoma

    http://www.abc.net.au/news/2015-04-20/doctors-hail-melanoma-breakthrough/6404426

    Fingers, toes and everything crossed

    Regards

    Malcolm Benjamin

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  • D Day!

      26 March 2015

    It was the big day yesterday. I received my scan comparison, latest scan 8 days ago compared to the marker scan back in December. To put it in cricket terminology it was a draw. No evidence of disease progression however at the same time there was no evidence of any regression. One could say that the drug I have been on (Ipilimumab) has kept things status quo and given that Stage 4 Melanoma is very aggressive that’s a good result. However in consultation with the oncologist we will now move to a second immunotherapy drug called Pembrolizumab. This drug targets the PD-1 protein on the surface of T cells. It is a second generation immunotherapy drug that by all accounts shows a better success rate than the Ipilimumab however this was the gateway drug.

    Generally I am still well with the exception of pain which is gall bladder related. This has had some impact on my normal activity however I will now look to use a stronger pain relief so that I can continue to cycle. I am hoping to see some tumor reduction with the new drug.

    Thanks for all the support.

    Regards

    Malcolm Benjamin

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  • Waiting for results

      17 March 2015

    Last night was scan night so I got the works so to speak as I had a full body scan. Now that's value for money.

    I will get the results on the 25th March but it's hard to make any pre judgment. While I am positive about winning this battle one still can't not recognise that you can get the odd blood nose in the process. I have some niggles which I think are gall bladder related but they don't have a great impact on my day to day life aside from missing some bike rides

    It's interesting that the world doesn’t change when one has an illness- the warriors are still unpredictable and the Blues can't get a win.

    Rob Davis is talking to the big guy upstairs and is going to offer him some free marketing if he does the right thing for me. Brian Mackie could catch him some fish and Millsy could take him to a Warriors game. Maybe these sorts of bribes will work.

    Anyway on a more serious note I will update you when I know more.

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  • Thanks

      19 February 2015

    We are lost for words with the generosity of people. A couple of donations are from old work colleagues from the late 1970s (yep I still remember those days). And then there are others from family, friends and friends of friends and from people who I have crossed paths with during my day to day life.

    It's hard to understand how someone with a complex illness can be outwardly so well. I refuse to let the word terminal (as used by the oncologist) enter my vocab. Next week is a routine (I hope) appointment with the oncologist and then I will have a scan about mid-march. I pride myself that since the diagnosis day back on September 20th 2014 I have ridden 2500K on the bike. This illness is a good excuse not to do any work on the front of the cycle group (cyclist are good at abusing those that don't spend time at the front as this is the hardest place and I receive no favours).

    Melanoma March is promoted by the Melanoma foundations across New Zealand and Australia so please put your black spotty kit on for a day.

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  • Cycle 4 - Message from Malcolm

      2 February 2015
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    Well that’s another 3 weeks gone so we now head into Cycle 4 of the Yervoy (Ipilimumab) infusions. This is the last one so we then have a 6 week wait before a scan to establish what success there has been.

    It will be a long 6 weeks and we will still need to be on the lookout for any ‘immune-related toxicities’ (I flogged that from a letter from Pharmac). All seems to be OK on that front currently but every ache and pain sends up red flags to the brain.

    Today (Monday 2nd) was blood test day, tomorrow (Tuesday 3rd) is pre infusion appointment with oncologist (external exam) and Wednesday 4th is infusion day. Always get some nice lunch (yep bet it’s added to the bill).

    There is a Facebook support group that I subscribe to – it’s a good platform to communicate with others who are either in the same boat or in boats with a slower leak. As someone on the site described ‘it’s like living in a parallel universe’. People I meet up with say there is nothing wrong with me – I would be happy to trade places but I wouldn’t wish this on anyone.

    I broke 2 teeth over Christmas and now dentist bills are in perspective – when I said to the dentist as cheap as possible and told him why he wanted to say a prayer with me – I am not religious but what a nice thought.

    March is Melanoma March so it’s great that it’s getting some profile. I think the 28th is Spotty day so that’s a chance for Rob to hunt out the spotty shirt (he must have one) in his wardrobe. Millsy most probably has a spotty tie as that’s something a bean counter would have.

    For those looking to a career in medicine this treatment is the new frontier in the fight against some cancers however that said it was FDA (Federal Drug Administration) approved in March 2011. I also read with interest that 3 cups of coffee a day will help keep Melanoma away so how come I used to drink 8 or 9 cups and it didn’t help

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  • DRUGS THAT TARGET CTLA-4

      2 February 2015

    CTLA-4 is a protein found on the surface of immune cells called T cells in the body. It normally acts as a type of “off switch” that helps keep the T cells in check, preventing them from attacking other cells in the body. Unfortunately this can also stop them from attacking cancer cells.

    Ipilimumab (Yervoy®) is a monoclonal antibody that attaches to CTLA-4 and stops it from working. This boosts the immune response against cancer cells in the body.

    This drug is used to treat melanomas that can’t be removed by surgery or that have spread to other parts of the body. It doesn’t seem to cure the melanoma, but it has been shown to help some people live longer. Ipilimumab is also being studied for use against other cancers.

    One concern with this drug is that it can allow the immune system to attack some normal organs in the body, which can lead to serious side effects in some people. The most common side effects include fatigue, diarrhea, skin rash, and itching. Less often it can cause more serious problems in the intestines, liver, hormone-making glands, nerves, skin, eyes, or other organs.

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  • Another infusion this week

      2 February 2015

    Another infusion this week

    Blood tests today, Oncologist appointment tomorrow, Infusion on Wednesday.

    So far Dad is not had any terrible side effects to speak of, just some annoying ones and low energy levels. For those of you that know Dad you will know that Malcolm Benjamin and low energy levels do not mix very well.

    Dad is trying to do at least one physical thing a day – whether that be a bike ride, or walking my dog – sitting on his butt or sleeping in is just not on his agenda.

    We have really been overwhelmed with the generosity of people donating to this site. It amazes me that people that we don’t even know have been very generous. People from Mum and Dad’s past have been donating, and of course our lovely friends and family. It’s really showed us that we are not alone in this fight. The words of encouragement and thoughts of hope have been great to read.

    There really is no way to thank you all for what you have been doing.

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  • Another Message from Malcolm

      13 January 2015
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    Tomorrow is my third infusion. With one more to follow after that.

    I had pre infusion meeting with oncologist last night and the external exam and blood tests were all good. Nothing was identified that he is concerned with but we now have to be more vigilant than ever with side effects.

    I would be less than truthful if I said that the dark moments don’t occur. All the plans we had for retirement have to be revised, if god willing I get that far.

    Christmas was a great time with the extended family and I plan to have updated photos next year of the one I have attached.

    Over Christmas I still managed to cycle most days along with dog walking twice a day, but energy levels are a bit down.

    Mary and the girls are rocks and we have accepted this challenge together but I am still the captain.

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  • Message from Malcolm

      24 December 2014

    I had a marker scan last Friday as my last scan in September was considered too old. I met with the oncologist today prior to having the ‘gold’ (Yervoy) infused.

    The marker scan showed no new sites so that was a big relief however there was minimum growth to existing sites which oncologist said could be expected - that means growth in tumour size. The external examination was also fine. Oncologist says he is more than happy with results.

    That’s 2 infusions completed and 2 to go. At approx. 6 weeks after the last infusion they will scan again for compare with the marker scan.

    Currently I have no side effect from the drug (not even a golden glow) although the oncologist said it may still be a bit early for those to present if in fact we get any.

    I still appear to be fine health wise in that I have had no dramatic weight loss or unexplained pain. Still riding my bike on a regular basis - long rides these days are 70k and I sit at the back of the bunch (plenty of excuses).

    Am I any grumpier? I think not but Mary might think otherwise.

    Thanks for the support and have a safe and happy Christmas

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  • Merry Christmas

      24 December 2014

    Hi Everyone,

    Dad had his second infusion today. So far still no real side effects – which is great.

    Looking forward to a great day tomorrow, and some family time over the holidays.

    Merry Christmas – thanks for your support

    Jodi

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  • Thanks

      13 December 2014

    Thanks everyone for your support so far. We have been blown away by the generosity.

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