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Starting TFR in November after 9 years of daily drugs

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Hi, my name is Ian and I haven't posted on here for a good few years as treatment has been uneventful, thank goodness!  

My story in a nutshell is cml diagnosed 9 years ago at 65% with 350k white cells in spleen, biggest spleen doctors had ever seen! 2 years on Imatinib 400 lots of side effect but got down to 0.1 but numbers got stuck.  Moved to sprycel 100mg and went down to 0.005 zone quite quickly and have been there for last 7 years.  2 years ago dropped to 50mg sprycel in preparation for TFR trial.  Latest PCR was 0.004 :)

Well today went to Kings and discussed TFR and will be starting in November with monthly PCRs and 3 monthly check ups, with first 6-9 months being critical to holding response.

Wish me luck and hope the immune system can take over, will keep you posted on this thread. Will answer any questions anyone may have also about any part of my journey so far...

BTW This link is a pretty awesome introduction to TFR: http://mypcr.org/wp-content/uploads/2018/09/MyPCR_TFR_FAQ.pdf

Kind regards

Ian

 

That's great, Ian!  Can't wait to continue your story.  So far, that story is exactly the same as mine, except nobody is talking TFR to me.  That's OK.  I'm willing to wait awhile.  Did you never get any pleural effusions on Sprycel in all those 7 years?  I've had four, and each time I took a drug holiday to get rid of the fluid, the CML came roaring back pretty darned quickly, which was discouraging, because I had been having a lot of double zero PCRs (0.005, etc) and thought I was pretty close to undetectable and maybe could stay that way.  No such luck.  Maybe someday.

Hi Kat, good to hear from you :) No plural effusions for me and have tolerated sprycel really well.  I had to push for TFR myself as everything is going well but wanted to try and see, also helping with research at Guys into how the immune system changes when you come off Sprycel.  They will take bloods before I stop and 3, 6 months in and analyse.  Hope it helps other people...

Yes, it will I'm sure - the key to the lock is in the immune system - there's obviously something different about the immune response of someone coming off Sprycel at DMR and zooming back to the left of the decimal point at 11 weeks, and someone who goes for six months (or longer) and never loses MMR.  Thanks for being a guinea pig!

Fabulous news, Ian.  After nine and a half years on Glivec i started TFR at the end of August.  I hope it goes well for you.

Thank you, stopped on Thurs, so far so good just a little achy but that could be because I am getting old!  Also enrolled in a trial at Guys to have my immune system monitored via blood at day 0, 3 months and 6 months to see how the stopping affects the immune system and if they can spot any markers that may help identify others who have these markers  who may stop as at the moment it is 50-50 success.  Could help with predicting success but wont help me...

Keep us posted Ian as some of us hope to start the same journey in 2019.Good luck with holding TFR,

best

Chrissie

Month 1 update, just had PCR result back and 0.001 which is the lowest I have been for a long time, always hovered around 0.003-0.006.  Not sure what to read into it but feels positive!  Had terrible headache and felt like the life had drained out of me for a few days about a week after stopping but feel much more energized now.

Fingers crossed and will report back next month

Ian

Terrific, Ian!  When will they be looking at immune system markers?

Great news, Ian.

0.001% is indistinguishable with PCRU. Any value below 0.01% is meaningless, so you are doing terrific.

But as you pointed out, you have to be watchful these next several months. If your levels stay below 0.01% for six months you are on your way. A blip up does not necessarily mean CML is recurring. You need a trend upwards for that to be the conclusion. Stay the course.

Boost your immune system with vitamin D to give yourself an edge.

Also - when I stopped Sprycel, I had a thyroid attack (thyroiditis) at around two months in. Sprycel affects the Thryoid gland I learned especially during withdrawal.

https://www.hindawi.com/journals/bmri/2013/725410/

https://www.ncbi.nlm.nih.gov/pubmed/20929406

So be on the watch out. Not much you can do during thyroiditis except monitor thyroid function (TSH, T4, T3 and related hormones). I had to take a thyroid hormone for a short time as the attack resolved itself. Avoid excess iodine during your withdrawal period (six months) so as not to overstimulate the thyroid. Your thyroid is fixing itself during your TKI stoppage. I wish somebody told me this before I tested cessation. It was very painful.

Thank you and they will take blood in February for first look at markers after stopping Sprycel.

Thank you Scuba and have been taking spray Vitamin D daily since I stopped as I saw that you had posted the benefits of this to the immune system and other benefits a while back.

Not sure I have been affected by Thyroidism (yet) but do know I feel different and not sure what normal is after 9 years!

Next PCR 18th Dec due to xmas holidays so will report back when I get results and as you say 1st 6 months are key...

 

Month 2 PCR of TFR and result is less than 0.001!! So far so good and counts going down if anything to my lowest ever, not sure I expected that, does this mean the immune system is taking over after 9 years? Maybe daily Vitamin D helping immune system...

Ian - how much vitamin D are you taking? Do you know your current blood level?

Good job Ian.  Really gives us all hope.  All the best to you

Scuba, not sure what my levels are will ask how I can check next time I visit.  Currently taking the following daily as you posted some research and my wife who recommended it based on advice given in her recovery from breast cancer, she is a physio:

https://www.amazon.co.uk/BetterYou-DLux-3000-Vitamin-Spray/dp/B00AWNART4

Ray Sell, think you and hope I can give inspiration to others to stop when ready and safe. I was inspired by the trials they ran and felt like I was a good candidate for TFR, wanted to see what life was like without drugs and save money for NHS, so chased it up for 2 years when finally they agreed...

There is a very helpful FB group only for those in TFR.  You can request to be added. It’s CML Patients in TFR.  Great news about your TFR journey.  And I’m also curious how much Vitamin D?

Update on my TFR so far started Nov 1st 2018:

Month 3 PCR of TFR 0.005 IS

Month 4 PCR of TFR 0.006 IS

So slight rise but still in the boundary that I have been in for last few years.  Am very happy and staying stable!  Been advised not to get concerned unless the reading gets close to 0.1 on 2 consecutive tests and that 8 months TFR is an important milestone without relapse so half way there!

Will keep you posted

Cheers

Ian

 

Terrific news, Ian.  Those of us who are in the "double zero to the right" club are most interested in how you do on TFR, since the current real-life restrictions (in other words, our own personal oncs in clinical practice, not the research bloc) demand a couple of years of "undetected" PCRs before they'll even talk about TFR.  I am hoping your immunity markers will be illuminating.  In the meantime, you've gotten past the initial scary part - yay!  I went from 0.005 to 2.16 in the amount of time you have stayed at 0.001 - 0.005.  There has to be a reason why!

Well the last months results have been a bit of a blow:

0.12 IS 

So now need to get another test done and see if it is a) a mistake, b) a blip or c) an upward trend

Quite a big jump in one month so hoping it is a or b but if c just have to restart the meds knowing I have tried at least...

 

Ian, sorry to hear this - really hope it is a blip. Fingers crossed.

Ian, I sure do know how you feel.  I hope a redo shows differently, but even if not, I know you will recover your former numbers by returning to a TKI.  And that, of course, is what is really important.

I have noticed that it frequently seems that after a long stretch off drug, when people go back on, their numbers absolutely plunge - farther down than they had ever been before.  I don't know what could explain this phenomenon, and I've never read anything about it, but I've definitely experienced it myself and have noted it many times in peoples' stories here.  Anecdotal, but maybe this will be your story, too.  And maybe that means that you can try TFR again someday!

Hi Ian,

Your bump up is unfortunate. It's likely real given it's two logs. Assuming re-test confirms, consider restarting Dasatinib at 20 mg maintenance dose. It will likely drop you right back to <0.01% and you will have less toxicity (less side effects). I maintain my PCRU on 20 mg.

(I do wonder, however, if changing drugs (rotation) to bosutinib or another might eliminate the resistant clone and end CML for you)

@Ian, any news to report?  So sorry to hear about your blip.  My husband went to .12 in month 10 of TFR and then back to .04 and now up to .098.  We are waiting to see his next PCR.  Quite a few people bounce around, but I agree with Scuba that this was a pretty big jump.

This is his 2nd PCR attempt.  After the first one that only lasted 4 months he was back to undetectable very quickly.

Hi no news yet next bloods Monday so will probably find out week or so after that, will let you know on here how it goes but not holding my breath and have some leftover tablets at hand ready to start again...

So PCR is 0.031 this month so down from 0.12 last month so maybe last month was an anomaly, at least will get another 2 months off the drugs and hopefully PCR will stabilise around this level, fingers crossed...

Great news Ian. Onwards!

Wow, what a nice piece of news!  Don't know what to make of such a difference.  Keep us posted on the next one!  What have they learned about the immune system markers, anything?

Yes I was a bit surprised and now a bit confused about what is going on! I wont know about the immune system markers as I just give blood and dont hear anything more unfortunately...  Next bloods on 7th or 8th May so wont know until late May what the next counts will be but will let you know on here.