[peter_aParticipant]

My Myeloma story actually started in early 2018. I visited my family doctor complaining of a sore back, and he requested various tests including an x-ray and blood tests. I remember receiving a phone call where he explained to me that I had a blood condition known as MGUS and he explained it had a remote chance of transitioning to Myeloma. He advised me that there was no rush to immediately follow-up. In fact, I was due to depart on a long holiday and he assured me that there was no need to take any action until after my holidays. By the way, the back pain turned out to be a muscle problem.

I first visited the local Cancer Care Centre in mid-2018 and was told all about MGUS and was recommended to have 6 monthly blood tests. My paraprotein level was around 5 g/l. Over the next year I was checked 6 monthly and the paraprotein level was static around 5 g/l. The Haematologist then advised that 12 monthly tests would be adequate and that my GP would be adequate to check the results.
My paraprotein level remained around 5 g/l for 6 years until a test in November 2023. I then recorded a reading of 15 g/l. My GP advised that I should check again in 6 months. I didn’t wait that long, and I had a test after 4 months.

In March 2024, my paraprotein level had risen to 37 g/l. Time to see the Haematologist again.

By the way, I was 63 years old at this time and I was a healthy and fit passionate Mountain Biker and Golfer.
Following a bone marrow biopsy, my treatment for Multiple Myeloma commenced on 23 April 2024, at which time my paraprotein had risen to 60 g/l.

Details of my treatment (so far) are:

• I was accepted on a drug trial. My biopsy indicated I was “high risk” so consequently my treatment included the trial drug Selinexor.
• My standard treatment consisted of Dexamethasone, Bortezomib and Lenalidomide – initially for four 4 weekly cycles with a week break between each cycle.
• I was booked in for my Stem Cell harvest on 5th August, but was sent home as my stem cell count was too low. Fortunately, my count was adequate the next day and my stem cells were collected successfully and sent off to be frozen at Westmead.
• During September, I required various tests to ensure I was able to handle the impending high dose Chemotherapy. I also had a PICC line installed.
• On 1st October I received the high dose Chemotherapy.
• On 2nd October I had my Autologous Stem Cell Transplant.
• On 8th October I commenced a 5 day stay in hospital in a positive pressure isolation room.
• My second round of drug therapy restarted on 8th January 2025. This is to be two 4 weekly cycles of the same drugs/chemo as used the previous April.
• I regularly (monthly) have a Zometa infusion to strengthen my damaged bones.

My results to date have been good.
The progress of my paraprotein levels have been as follows:

• 60 g/l at the commencement of treatment
• 49 g/l after 2 weeks treatment
• 3 g/l after 7 weeks treatment
• 1 g/l after 3 months treatment
• <1 g/l after 4 months treatment
• Zero paraproteins 7 weeks after Stem Cell transplant (and kappa and lambda light chains both in normal range)
• Zero paraproteins 14 weeks after Stem Cell transplant (and kappa and lambda light chains both still in normal range)

In addition to my treatment, I need to mention the damage that the Myeloma has done to my spine. Initially a skeletal scan revealed one fractured vertebra. A second scan some months later revealed a total of 5 fractured vertebrae. This has resulted in difficulty for me to stand erect and I experience pain when walking.

Consequently, I commenced on high dosage pain relief (60 mg of opioid based Targin – 30 mg morning and night). After my Stem Cell Transplant, I was able to slowly taper off the pain killers and finally in January 2025, I no longer require any pain relief. I still experience pain when walking, but this was never alleviated by the Targin anyway. I am completely pain free when laying or sitting in a comfortable chair.

At present, my biggest issue is my damaged spine. Even though most Google searches indicate that Myeloma fractures never heal, I have also seen evidence that exercise can make a difference, especially weight bearing exercise, as this is known to maintain good bone health. To that end, I am doing the following in the hope that it will trigger my bone repair.

• I am seeing an exercise physiologist who has prescribed a suite of exercises and stretches primarily focused on build my core strength so that I can better support my damaged spine,
• I am attempting to do long walks. One month ago, I was hardly able to walk 1km but yesterday was able to do a 4.3km bushwalk.
• I am using an indoor cycling trainer (on most days). Although this is not “weight bearing”, it is doing wonders to rebuild muscle and to regain my fitness. I am totally comfortable in a cycling position, and it does not hurt my spine even if I push quite hard on the trainer.
• I am trying to do all my usual home maintenance tasks, such as mowing and edges.

But my story is so much more than just the treatment and the results. Obviously, the mental and spiritual aspects of dealing with an illness like Myeloma is a major factor that each and every patient needs to handle.

The greatest support I have leaned upon is my Christian Faith. Please continue reading, even if you are not “into” this lifestyle.
There are two main aspects I wish to mention – firstly, being able to remain peaceful during this period of my life, and secondly, seeing God’s involvement in my treatment and results.

Regarding being able to remain peaceful – When I first learned of my MGUS, I had 6 years to consider how I would deal with life if the MGUS transitioned to Myeloma. I quickly concluded that I would simply accept that God is in control, and I would look to God for peace. I was adamant that if I did end up with a serious cancer, that I was determined to respond and deal with it in a way that would make my family proud of the way I handle it (Wife, 3 Daughters, 3 Son-in-laws, 6 Grandchildren). Also, I wanted my potential cancer journey to bring glory to God.

This has worked – and I can honestly say that I have not experienced any anxiety during this whole time, I have not suffered any depression, and I have not lost a single minute’s sleep. Please note, there have been days when I have been despondent and angry (due to the back pain). Philippians 4:7 “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus”.

With regard to God’s involvement in my treatment – I am sure many will be sceptical of my claims. I believe that God has blessed my treatment and results so far, so all I will do is state the list of experiences that are meaningful to me, as this is a very personal thing. You would need to experience God’s involvement in your own life to be able to verify the reality of his involvement.

• I was fortunate to be able to be on a drug trial. I have since discovered that the trial was only available in 2 hospitals in my State, and I just happened to walk into one of them. Also, if I was one year older, I would not have been eligible for the trial.
• During the drug therapy phases, I suffered no major side effects. This surprised all the specialists.
• My paraprotein results have been great and in fact, at one stage, my Haematologist used the words “your results have been amazing”. Specialists would rarely use words like “amazing”.
• Prior to my Stem Cell Transplant, I was told that I would suffer a least one infection and that my mouth and throat would suffer from ulcers. Many other side-effects were also mentioned. I did not have any of these issues and in fact, 3 different specialists said this of my post-transplant recovery “you are a boring patient, as nothing is going wrong”, “you swam through the recovery” and “you recovered better than most younger patients”
• My post-transplant blood tests could not be any better.
• I have been able to taper off all pain killers without any change to pain levels and without any withdrawal symptoms.

I am hopeful of complete recovery from Myeloma or an extended life where my Myeloma can be managed. I am also hopeful that my damaged spine will heal and that I can lead a more comfortable life (and maybe even play some Golf again).

If these hopes are not realised, I am confident that God’s peace will be with me and God will help me deal with whatever is ahead. We will all die one day – and at that point I will look forward to being pain free in God’s presence.

[jonParticipant]

Hi I have just read your post and just wanted to say its inspiring. I was diagnosed in December 2024 and have just finished my first weeks chemo. I am feeling pretty good and am keeping as fit as I can through walking and stretches. thankyou.

[ritzygirlParticipant]

Hi, your message was inspiring and I look for hope. I’m a half full glass girl aged 56 I was diagnosed with myeloma in January having had backache for a couple of months. I knew I had MGUS but never thought it would turn into myeloma luckily I’ve had scans biopsies etc. quickly, with a bit of a nudge I’m having my third chemo this Friday so I’ve started my marathon and my only thoughts are to get better and get back on the fun bus. I don’t waste any time worrying about what’s coming up I just deal with it on the day. So much so I forgot that I wasn’t supposed to eat after 9.30am as I had a PET scan in Cheltenham and at 12 o’clock I was chopping on a cheese sandwich luckily they slotted me in later on in the day! Worrying, It’s too much energy and we need to save ours for this journey. Constantly saying to my sister as she’s a real worrier 95% of what you worry about never happens.

I keep positive eat healthy lots of protein and have had to up my calories & I drink gallons of water & a good walk every day. Also try and keep off citrus as I don’t want a sore mouth or throat so far it’s worked. I believe I can keep a healthy body & mind. It will get me through this. One thing is notable I’ve always kept healthy and fit and I’m about nine stone and have been that weight most of my life and I’m immensely proud how my body has sustained a real bashing the last four weeks and it just goes to show that all the hard work over the years keeping fit is paying off now to get me through it. I wish you all well on your journey and hope that one day they can find a cure and I’m planning on getting another good 10 years out of my life to see that happen.

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