Patiently awaiting my marrow BX results with a calming sunset in my neighborhood.

[skipro]

Awe, due to heavy rains could not get out to the mountains to hike, but I caught this beauty just around the block from my condo when I went for an evening walk.

Skipro

[Zia2]

Beautiful. Reminds me of ND. Loved it there. (Except winter 🥶 ) 😊. May you receive excellent results

[skipro in reply to Zia2]

awe thx

actually got results today and unfortunately the disease is progressing despite Ven

so I think I'll stop treatment at least until spring as I really need a break

Unless I can get into one of the mop up trials

Hope all is well for you

🙏🙏🙏

Skipro

[HopeME in reply to skipro]

Hi Mike:

Is your disease progressing or is there more residual disease than you had hoped to see? With more resilient CLL there is always residual disease which may or may not be detectable. It will progress over time but hopefully it will do so slowly.

Best,

Mark

[skipro in reply to HopeME]

Mark

The amount of mrd actually increased between month 13 and 18 on The Ven portion of V +O ( from 4/10,000 to 8/10,000)

So unless it's some sort of margin of error thing on the test it's progressing

Seeing docs on Mon and Tuesday to discuss next step.

Thank you

[HopeME in reply to skipro]

I don’t know the answer to your question is it progression or is it a sampling issue. However, moving from .0004 to .0008 CLL cells per 10,000 cells doesn’t sound like progression to me but I’m not an expert. It’s hopefully a sampling issue? Please let us know how your doctor interprets the results. I had 4 cells/10,000 after my initial chemo treatment and I enjoyed 4 years without treatment.

I’m in a similar situation as you in that we both are in the same age range, both had chemo frontline, both moved to V + O as a second treatment and neither of us was able to use the 1/1,000,000 test to evaluate the effectiveness of the V + O treatment ( In my case I didn’t have a dominant clone ahead of treatment which precluded use of the more precise testing).

I’m going to have the test you just had in December at hopefully what will be the end of my V treatment. I hope your doctor gives you good news this week and you are able to return to some sense of normalcy in your life.

Mark

[skipro in reply to HopeME]

You may be right on sampling error.

I guess I was looking for uMRD 4 or 0 after the 5 additional months.

Thank you for your encouragement and sharing your similar situation

It's al says nice to hear from someone on th e same journey

Thx

[BobbyFour in reply to skipro]

I am not a statistician, but it does seem to be a very tiny number to draw statistical significance from.

I do get the feeling that 0 would be better mentally, but I try to remind myself that 0 really isn’t 0 anyway. They don’t do MRD testing here, and I am actually quite ok with that 😀

[skipro in reply to BobbyFour]

Thank you

I just wanted so badly to be off treatment

and as a scientist and physician I know logically what you say is true.

[SurfSurf]

Great pic and sending you calm vibes and positive thoughts for a great report.

[skipro in reply to SurfSurf]

awe thx!

[Wonderwoman23]

Hi Skipro,As usual your photo is beautiful ! Praying for the very best outcome, and until then, perfect peace . 🙏

[skipro in reply to Wonderwoman23]

Awe thx

Got the results a few ours and now I'm having disease progression despite ongoing Ven

Debating whether to get into one of the mop up trials or just go to WW and ride the wave as long as possible

I feel a lot of peace and think it's a blessing in disguise because it make sense to stop treatment which would lead to a much needed break .

I might look into one of the mop up trials .

Just one peaceful positive day at a time

God bless you and 🙏🙏🙏🙏

Mike

[Agfar in reply to skipro]

Feeling at peace must be calming and definitely worth a hike later.

[skipro in reply to Agfar]

👍

[Wonderwoman23 in reply to skipro]

I'm sorry to hear that you are still experiencing progressing on the V. That is disappointing after all you have been through with this treatment. A break may be just on time though with another alternative just around the corner. I pray for peace for you and believe that God will direct your next steps for your good. Stay positive my friend and keep sharing those amazing pics. They bring so much joy, peace and inspiration to others. Please know what a gift you are to this community. The way you capture such beauty through your camera lens is a constant reminder of God's glory and how good his gifts to his children are. Many prayers and hugs to you. 🤗

[skipro in reply to Wonderwoman23]

Thank you so much

Skipro

[Stamphappy]

Skipro, do you know how much I appreciate your photos? You bring such peace and hope through your photography and gentle approach to everything that comes your way. You are a blessing in my day. I pray the next step, in your treatment, brings brighter days filled with strength, in body and spirit, determination, to overcome the hurdles, success, in all your endeavors, and an ever growing love of this beautiful life we are granted.

[skipro in reply to Stamphappy]

Thank you so much

My prayers are with you on your journey

[studebaker]

That should be framed and enjoyed for meditation in my opinion.

Beautiful and peaceful ☺️

Dana

[skipro in reply to studebaker]

👍

[Islandvibes]

nice walk

[skipro in reply to Islandvibes]

👍

[CycleWonder]

Lovely photo! We were stuck inside for a few days to due to forest fire smoke. The heavy rain from thunderstorms cleared the air so last night we could walk around our Duck pond and were out again this morning.

I hope you find a new medication that has less severe side effects and will keep your CLL in check.

[skipro in reply to CycleWonder]

Thank you

Glad you could finally get out doors!!!