So sorry. I can hear the pain, fear and confusion and am so sad. I cannot even imagine being where the 3 of you are, but please know that you are being held up in prayer and we are here for you.
Love to all of you,
Kathy

I am so very sorry to read you latest Jay. You and Jen must be in shock.
Hoping that a clinical trial or other options present themselves over the coming days.
Sending love and hugs to you, Jen and Hunter.
Gabriele

Jay-
I just read your last post. I am so sorry about the latest news. I am wishing for the very best for you all at this time as you research and evaluate new options for treatment.

Best,
Mary

Appreciate everyone's well wishes and we are still a bit confused as to what is going on..

As per my previous post, the surgery did not go as planned and Jen was given the grim news that the cancer has now turned into something that is non-curable and current treatment regimes will be ineffective.

Basically, we have been told indirectly by the doctors here in Melbourne to make sure our affairs in order as there is nothing else they can do treatment was other than saying it may be worth putting Jen into Palliative care.

This is because they are reluctant to give any Chemotherapy as Jen is currently doing very well physically and don't want to risk losing that for the high toxicity and very little benefit from the chemo which is generally the case for metastatic cancer. The same goes for any treatment required to remove the tumor from Jen's lungs and have advised against tomotherapy and/or surgery to remove this.

The MO also said that there will be traces of microscopic cancer in and around Jen's body despite nothing coming up from the recent PET scan, and that it is only a matter of time that this thing will spread to other parts of her body.

However, they say there was no growth in the tumor since her first CT scan in May compared to the latest ones mid July which is also a bit baffling to say the least especially when they say Jen's cancer is very aggressive!

Furthermore, the pathology reports indicated that there was no evidence of cancer from the fluid extracted from the pleura although our MO dismissed this as a "false-positive" and told us that it is very likely there are cancer cells there.

You now know why we are so confused and Jen & I have decided to keep positive and not let the grim news overwhelm us especially when she is doing so well physically for the meantime and the doctors here in Melbourne are basically saying to us "We don't know what's going on but we know the cancer is aggressive so we can't cure you".

Hence, we have decided to take this treatment back home to Korea to request further opinions and there are highly regarded doctors that we have already spoken to who are still not sure this is in fact cancer that has spread and still think it is a new primary which means we may still have a chance to beat this thing..

Looking into clinical trials at the same time (I am fascinated by Reolysin and would like to ask those on the board if there are any who have any further info on this) and we have our first round of our new doctors appointments already scheduled for the 16th & 21st of August.

As we enter another important phase with trying to figure out this riddle, please pray for our family and any information or assistance over the clinical trial or shedding more light over this situation would be greatly appreciated.

Kindest Regards
Jay, Jen & Hunter

Thanks for the update! Yes, I can certainly understand your confusion with Jen's diagnosis! Im very glad to hear Jen is physically doing very well. With her feeling ok, it helps her to have a better outlook about the entire situation.

From what I know of Reolysin, it is still being trialed here in the US. It is showing some promising results. It could be more readily available in other countries, Im not sure of their procedures with bringing new drugs into the market for the general public.

As always, Im wishing you, Jen and Hunter all the very best with everything.

I don't blame you one bit. It's easy for these docs to say "give up, there's nothing that can be done" but I wonder if THEY were in your shoes, would they?

Jay,

What a tough situation. I'm glad you are looking into other options. I don't have any sound medical advice to give you, but I will keep your family in my prayers.

Good luck with the 2nd opinion. What one doctor or hospital may not be able to treat, another may. You both will be in my thoughts and prayers.

Let's hope that the doctors in Korea will find a way to deal with the situation. You and your family are always in my thoughts during this very tough time.

You got this Jay. Love is strong, so is belief. We are on that precious "extra" time....for a year now! More opinions, more research, more options.