[MicheleParticipant]

I was diagnosed with MM in May 2011 and after 6 cycles of CTD had a stem cell transplant in February 2012.
I’ve been completely drug-free for over two years now but only ever achieved a “very good partial remission” after my SCT.

Imagine my surprise today when I was told by my specialist that my latest PP readings have come back “undetectable” and that I’m now classed as being in “complete remission”.
She also said how well I looked and that my next appointment would be in 6 months time!

I didn’t see that one coming at all and am still in a state of shock as I didn’t know things could improve after all this time.

Just goes to show how unpredictable MM is and that looking after my immune system by eating all that rhubarb, spinach and blueberries seems to have worked! I’ve always kept a very positive attitude too which has helped a lot.

I bought a 2015 diary this afternoon and shall start booking some holidays for next year!

[dengilbertParticipant]

Hi Michelle,
Really good news for you !! It gives hope to the rest of us on CDT ?!!
My Husband is on cycle 4 of CDT and is progressing well so your news will give him a boost !!
Continue to live your life and all good wishes for your future … There is Hope !!!
Best wishes Denise x

[Anonymous]

Hi Michelle,

That is fantastic news! Stories like yours give us lots of hope.

I met a lady at the Myeloma Information day in Northern Ireland who had been diagnosed with Myeloma 22 years ago, and she is doing well. That also was a great story to hear.

May your good health continue for a long long time! (and thanks for the healthy food tips!)

Best Wishes,

Jan

[finnParticipant]

That is great news Michelle! May I ask you what were your PP numbers after SCT? Was there a steady decline on the numbers or did they just suddenly drop to zero? Hope you’ll have a very long complete remission!

[MicheleParticipant]

Hi Finn

When I was diagnosed my PP levels were about 45. CTD brought them down to just a “trace” after the 6 cycles.
After my SCT in February 2012 they still read “trace” and hadn’t shifted from that until now.

That’s why I was so surprised that they suddenly disappeared altogether. Surprised but delighted as you can imagine!

All my careful diet and general maintenance seems to be paying off so I’ll carry on the same regime!!

[stanley-1960Participant]

Hi Michele,

What an inspiring post.I am so pleased for you.

Best wishes,

Stanley

[bandityogaParticipant]

Brilliant news Michele. My husband hopes to get remission and SCT. He is on his 3rd treatment revlimid and FLC have come down from 1200 to 530 after his 2nd cycle.

[alicenorthParticipant]

That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have shown a trace of protein although light chains are still normal. Obviously, I am now worried that this is the start of the inevitable relapse. My consultant said, however, that this might not necessarily be the case. Even in complete response, the myeloma is still there, just well hidden. There is a certain level below which testing equipment cannot pick it up and just like normal blood fluctuations, the trace reading could disappear again, going back down below the level that the lab cannot detect.

May your complete response continue – keep eating the blueberries! 🙂

• This reply was modified 10 years ago by  alicenorth.

[VickiParticipant]

That’s absolutely great news. These are the stories that we need. Good news encouragement stories. Enjoy this, enjoy your completely remission it’s exhilarating.

Vicki

[tobygoParticipant]

Hi Michele

What a great post that I have just stumbled across – great to read such positive news and I hope that things are still going well for you.

I was diagnosed in January and I am in the middle of my 6th round of VTD and it looks like I will only achieve a very good partial remission ahead of my transplant later this year. Slightly disappointing and confusing but your post has answered a few questions for me.

Thank you.

Toby

[MicheleParticipant]

Hi Toby

I’m so pleased my post has helped and encouraged you. That’s just what I hoped it would do for folk on this forum.

In answer to your question, I’m still absolutely fine. I saw my specialist again in April and nothing had changed. Next appointment at the end of October. I’ve spent the year having some great holidays and generally living life to the full.

I still believe that what I eat is helping to keep my immune system in tip-top condition and thinking of life well into the future is very beneficial.

There is nothing wrong with having a very good partial remission. It’s what most people seem to have but I know what you mean by feeling disappointed after so much effort!

I’ve already bought my 2016 diary and am looking at holiday ideas for next year now!

Take care and let me know how things go for you.
Best Wishes
x

[tobygoParticipant]

Hi Michele

Thank you for your encouraging reply – I am relatively new to all of this and it is good to pull on others experience.

It is good to read your positive outlook and I am pleased you have had a great year.

I completely agree about diet. Whilst my diet was not ‘bad’ before diagnosis I have worked hard to change it over the last few months to help my body along. Lots more vegetables, a little less fruit (and different fruits), more nuts, less meat, etc.

I hope that you can soon start to fill the pages of 2016!

Kind regards

Toby

[dinoParticipant]

Michelle

I have just read your story and am pleased all is going well. I was diagnosed in Mar 15 and am in remission since late Aug. I go for STC in Oct and am scared to say the least.

It would be good to see your dietary regieme in a page of the magazine (Myeloma Matters?) which would give others assistance. I to have a reasonable diet thanks to a caring veggie wife. Did that help me get to zero blood count, who knows. Glad to hear about your holidays, we are away before STC starts.

Please keep us informed of your Oct results

Graeme

[MicheleParticipant]

Hi Graeme

Just a quick note to let you know that my October blood tests show that my myeloma is still undetectable and in complete remission.

As you can imagine, I’m very pleased about that.

I hope you’re progressing well too.

Best wishes
Michele

[dinoParticipant]

Brilliant news just what anyone wants to hear. I have completed all tests and have given up stem cells. Get a central line fitted 3rd Nov and bed availability I go in on the 4th. Scared is an understatement but needs to be done to increase remission time.

[Author]

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