Category: Pre Stem Cell Transplant

Well I thought it was time to provide an update on how we are tracking and what we have been doing over the past month or two!

In general, I am tracking really well.  There have been many highs and some lows. But in all, I feel that I am definitely doing the right things to nail this disease!  As per my previous message, I have been inundated with fabulous support from family and friends which has made the journey an easier one to travel.

The end of May 2014 saw the completion of my induction chemo. I must say that I am relieved to be off the steroids. They are good in that they super charge the effectiveness of the chemo drugs, but not so good as they effectively turned me into a hyper energiser bunny (without the drum) resulting in plenty of ANZAC slice being baked at 4am, hiccups that drove both Sarah and I crazy, and me talking at a rate more than normal. I genuinely felt sorry for those around me.

So with the completion of induction chemo, I am now half way through 12 sessions of radiation therapy where they are blasting my shoulder to eliminate the cancer there.  So far so good with that.  With regards to my shoulder, the pain is manageable and I am getting much better use and mobility out of my right arm (for those not in the loop, I shattered the top half of my humerus which is how we found the cancer).

So from here the focus is on preparing for my Stem Cell (SC) Transplant. On July 3rd I will go into hospital for a week where they will complete the SC harvesting.  They plan to acquire enough for 2 transplants. Then in late July, I head into hospital for three weeks for the SCT where they give me high dose chemo which will effectively remove all cancer, my bone marrow and white blood cells (my immunity). They will then reintroduce my own SCs which will re-establish my bone marrow and white blood cells minus the cancer. This procedure generally takes many months to recover from, but worth it given this is intended to put me into Complete Remission!!!  Bring it on I say!!

So a few other updates from my previous email:

• Allo SCT – my brothers were all tested as stem cell donors for me should I need an Allogenic SCT (where I receive their SCs instead of reintroducing my own).  Of my five brothers, Daniel and Chris were matches. They are either side of me in age. I have them both on a strict diet and exercise plan as I won’t accept any shabby old tired SCs.
• I previously reported – they identified an ‘unknown’ chromosomal abnormality. Well a little more testing actually found that the abnormalities were actually quite common. This was a relief as it means my cancer was characterised as standard risk and not the aggressive form.  I had a glass of Moët with Sarah, Dan and Rin on hearing that news.
• we have been to see Prof. Avni Sali. He is an 80+ y.o. doctor/ guru who was head of surgery at the Austin hospital. He left that role as he became annoyed by the large pharmaceuticals governing how medicine was implemented. The pharmaceutical approach is to treat symptoms with drugs only, ignoring other aspects of wellness such as the mind and nutrition. Below is a summary of the things we learnt. Please note that I have attempted to summarise some of our learning but really don’t do him justice.
• nutrition is going well.  I have dropped about 10kgs of ugly fat (without chopping off my head) and feel good for it. I am keeping up with my juicing, am off the red meat and dairy, and am sticking strictly to having no more than 2 bottles of wine a night…….all in the name of relaxation. Nah……. limiting the grog to a few glasses every now and then. Should probably be nil, but I am only human.
• I continue to see Nan my kinesiologist. She says I need to focus on integrating more fun and stimulation into my days of endless appointments.  I’m onto it……..but will happily accept more invites for coffee / dinner / lunch / walks / etc…….. Or maybe just provide suggestions on hobbies I could take up or toys I could buy.

Summarising the Professor (and not really doing him justice)! Priorities for healing and wellness, complementing the medical model (or superior to) include: (Note – point 1 contributes to 90% of healing)

1) reduce stress / meditation / relaxation – calming the mind for healing and wellness which achieved by meditation, openness and talking to confidants, pet and garden therapy, movie and music therapy, aromatherapy and massage. Get into the sunlight.

2) exercise daily – a walk is great

3) healthy diet – Organic is best!!  Interestingly, Prof. Sali does not promote the requirement for strictly vegan. Dark chocolate (70%+ cocoa) is his No. 1 food.  This is closely followed by fish. Both should be eaten daily. A couple of other key learnings:

• use cold pressed and extra virgin olive oil frequently. Great healing properties. Avoid vegetable oils esp. canola and sunflower – heat sensitive. Coconut oil is best for cooking.
• don’t burn your toast or other foods. This forms acrylamide which is cancer causing. This can include toasted cereals.
• soy milk is preferred and good for a serve daily.  Low fat milk is ok. There are many hormones in fat milk which are fat soluble and are removed with the fat in light milk.
• avoid sugar. Stevia or honey (yellow box or manuka) is best.
• must drink filtered water.
• great foods include pomegranates, avocado, grapes, berries, pistachios, almonds, cruciferous veges, onion family, sweet potato and mushrooms (shiitake is best). Get onto the leafy greens.

4) use supplements daily including: multivitamins, probiotics (gut microbes are increasingly being found to be extremely important to wellness), vitamin E, D & C to reduce ‘sticky blood’, green tea / antioxidant to enhance detox / cancer killer, ginger / turmeric (curcumin) to improve immunity, glucosamine for joint protection, cinnamon to lower insulin resistance and manage blood sugars, and…….chlorella contains chlorophyll which influences cancer and improves immunity.

I realise information above is presented very generically. However, I hope it stimulates some thought / consideration.

Well, thanks for reading this far. I hope this finds you well and happy.

As noted previously, You are all part of my ‘healing team’ and a part of me getting well so please stay in touch with me.  I hope to hear from you soon.  Thank you!!!

Geoff.

Hey Team,

So time for the next update.

Unfortunately my bro Jerome has returned to England so I have pulled this one together.  So for my last update I had finished my first week of chemo and all was well.  Well I am happy to report that things are still going really well.  Today I started my second round of chemo having just had the last week off all treatment.  For each round I have two weeks of treatment then a week off. I will have four rounds of treatment in all.

So as I mentioned, I have been feeling really good. The only exception to this has been managing the pain in my shoulder.  I have been popping pain pills like crazy, and have had a few sleepless nights.  But in all, I feel lucky that my treatment has gone well with very few side effects.

Today I received my FISH results which looks at the chromosomal typing of my Myeloma. They look at three specific chromosomal abnormalities in the cancer cell that, if present, would mean that the cancer has a high likelihood of mutating, putting the cancer in the ‘aggressive’ category, which in turn, would put me in the High Risk category. My results for all three tests suggest that i am in the standard risk category. This is good news!!  The only exception to this is that as part of the screen they identified an ‘unknown’ chromosomal abnormality ……….aaaarrgggh.  Unfortunately they don’t know anything about this chromosomal abnormality so the consequences are unknown….  My Dr – Dr Ali  (aaaaiiiiggghht respect) is going to refer me to a geneticist to get additional advice.  Will keep you posted.

So the plan for now is to  continue my Induction chemo, then in July go for an Auto (self) Stem cell transplant, and we will continue to look at the options for an Allo (donor) stem cell transplant). My brothers will be the ideal donors  (yes they may still be useful. 🙂 ).  They have all had blood tests and I expect to find out in a month who will be the best matched donor!  Brothers….this is to you……now is your time to shine!!  If you want the best brother tag, step up!!  I luv you all……but you know that!!

We have done a lot of work in the past few weeks looking at complimentary medicines / knowledge. I summarise these below.

• Nutrition – We have been very active here.  I have been reading a lot on wellness and we also met with one of Phillips friends Harry.  Harry has studied wellness for 30 years and had a lot of information.  All information tends to point to common themes. No Sugar, no white flour / bread, no dairy, reduced / no meat (all forms), no modified and processed foods, cut alcohol, lots of leafy greens and whole foods and grains. Lots of juicing.  So I am actively educating myself here, targeting more whole grain foods, drinking juice daily, I’ve cut milk with the exception of a cheeky coffee, I’ve cut the grog with the exception for a cheeky beer /wine………and I feel great.
• Prof Avni Sali – Harry suggested I had to see the Prof. He is an oncologist that highly supports integrated medicine……specifically wellness and nutrition. Whilst it will cost me my first born to see him, I am booked in to see him late May.  I let Dr Ali (aaaaiiiiggghht respect) know I was seeing the Prof. As it turns out, the Prof was a mentor for Dr Ali (aaaaiiiiggghht respect) and he is very supportive of me seeing him.  Apparently he will give me a whole new perspective on life!  Looking forward to it.
• Support from China – my bro Chris has friends in China who heard about me. Raymond sent me a locket and several ribbons, all of which were blessed by a Chinese high Buddha.  Every little bit helps!
• Kinesiology (auto correct changed to ‘kinda sexology’………hhhhmmmm).  Last week I saw Nan Abbott, a kinesiologist – a study of meridian and chakra energy as well as aura energy assessment and support. I was really quite amazed at some of the information that Nan was able to provide me.  In summary, she read from my aura that 1) I do not rest as it does not come easy to me and 2) I put my energy out there too much for others (instead of using it for myself)……….. Two things that I have to focus on changing. I get a lot from Nan and will See her again in a month.
• Meditation – to support me with the two above items, I have started to learn about meditation. The health benefits are widely thought to be massive!!  I started the other day following a YouTube tutorial.  This is an area I am really looking to progress.

Finally, and most importantly, love and support from Sarah, my family and friends (primary school, high school, uni, work, sport, through the kids etc) is critical to me being as happy as I can be, as positive as I can be, and as healthy as I can be.  I am receiving love and support in great abundance and I am hugely appreciative.  Thanks to my brothers and sisters who have flown to spend time with us, and to every one who has taken the time to come and see me, send me and email, give me a call, send a text, etc.  You are all part of my ‘healing team’ and a part of me getting well. Thank you!!!

So I will leave it there for now.  If you have managed to read this far, not fallen to sleep, and want to reply, please just reply to me only.

I’ll be in touch soon.

Luv ya’s.

Geoff