I haven’t been able to bring myself to write, since the last few days have been quite trying. Ben mentioned some of it on his last post, but he glossed over the dirty bits. Here it is with a little more clarity; the good and the bad.
As Ben mentioned, he was run through another PET scan last Tuesday, which looked a little something like this:
On Wednesday we went back to find out the results. As per usual, we took the entourage with us. Ben even tried racing Mama-Moe down the hall on his crutches which was good for a few laughs. Ben won the race but ended up in quite a bit of pain because of it. Worth it though, since he smiled the whole way.
Then we waited for Dr K….And waited some more…
And while we waited, Beth sent me an email with her latest research on Collecting Duct Carcinoma which turned up two case studies involving two people who had presented with this disease, and were in extremely bad shape at the time of diagnosis. It was determined that their primary tumour over expressed HER2, and therefore they received various medications along with a double HER2 blockade. The patients then experienced a dramatic improvement and a progressive decline in the size of all the multiple cancer lesions. Well, well, well. This is when our prayer turns to “Please Dear God let Ben be one of those people who over express HER2.”
About that time Dr K appeared and ushered us all into the room where we received the less then desirable news that the PET scan revealed the cancer has spread into the muscle at the front of Ben’s leg. Hence all the agonizing recent pain.
So we discussed what to do and where to go from here, and this is what he had to say:
- The results of the POG trial are still not back. Those could be another 3 weeks. So we wait. Hopefully they will discover something behind that Door #2 that I mentioned in an earlier post.
- The other pathologist was not able to rewrite Ben’s diagnosis in order to fit him into a different clinical trial that offers drugs that are having promising effects on various types of cancer. Ben does not qualify for the trial and cannot receive those drugs. So that pretty much sucks.
- Dr. K offered Ben another drug called Sunitinib. I mentioned in an earlier post that if #1 and #2 didn’t work, that Sunitinib would be offered. After I wrote that post I did a bit of research on the drug, and noted that it comes with some nasty side effects. Hasn’t Ben suffered enough?
We talked to Dr K about the side effects of the drug, and asked him what he hoped the drug would do for Ben. Dr K said he hoped the drug would slow down or halt the cancer. Then we asked what he expected the drug to do, and he said (in a nutshell) “nothing.” It was not expected to do anything positive because it is not meant for this type of cancer. It was just another shot in the dark. Ben said “no thanks.” I agree. No thanks.
We then talked to Dr. K about the information that Beth had come up with. He left the room to check and see if Ben’s tumour had been tested for HER2 and….. da da DA! It has not been tested for that. So now it will be. We should have the results this week. Please, please, PLEASE let Ben be one of the ones who over express HER2. If he does, Dr K will be able to access the drugs used in the case reports and give them to Ben. So there is hope again!!!
However, there is still the matter of the insane amount of pain that Ben lives with. Currently he takes so much medication that he sleeps about 18 hours a day. Sometimes more. Not even joking. He wakes up in the morning, moves downstairs into the recliner where he pretty much remains until midnight when it is time to go back to bed. Occasionally he tries to text and usually he falls asleep in the middle of it. That is obviously no way to live – we have to find another way.
On Monday (tomorrow) we have an appointment with a radiologist to see if he can do some radiation for pain treatment in the area of the muscle that is causing all the pain. If he is able to, Ben will start that on Wednesday. Cross your fingers that he will be able to, because Ben needs some pain relief. If he is able to get pain relief through radiation, then he can back off on the drugs and stay awake for longer periods of time. (That would be good because I need some weather stripping put up!!!)
Lastly, the Insley Girls got together today over coffee and pedis and reviewed some of the research that Barb has done over the last few days. Brilliant, Brainy, Beautiful Barbara came up with the idea of looking for clinical trials involving the use of the medications that Dr. K had hoped Ben could receive, but can’t because he was rejected from that clinical trial. And…she found some. Several, actually, and from reading the parameters of the trials it appears as though Collecting Duct is a qualifier.
Lets just take a moment here to LITERALLY THANK GOD for Barbara. “Thank you God for our sister.”
Not that it matters too much, but none of the trials she found are local (hence the fact that Dr. K did not know about them), but rather they are out of country and also possibly in Toronto. Which means we will go where the best chance is, even if it means leaving town.
Barb is emailing the trials to Dr K in the hopes that he can review them quickly and help Ben get into one of them IF it turns out that he doesn’t express HER2 and IF POG doesn’t turn up anything. Time is definitely of the essence here and we are not going to sit around waiting. Hopefully Dr K will respond this week – I am expecting him to contact us to let us know about the HER2 results, and will discuss the trials then.
Tonight we had some tough discussions with the kids about all that I have written here. Those are difficult discussions to have – to tell your children that right now there is presently no treatment for Dad. We explained that we still have hope, and that we will keep them updated. We also explained that we don’t know what it will look like for us if we have to leave the province or country for treatment, especially as we near the holidays, but we will cross that bridge when we come to it. Obviously they are all old enough to understand and agree that the priority is to exhaust everything we can find for treatment for their Dad, regardless where it is or when that might take place.
In the meantime we continue to juice and read about using food to heal cancer. The time spent juicing is crazy – between hunting all over Surrey and Langley for the right organic vegetables and fruit (which are ridiculously expensive, I might add. I pay $4.99 / cucumber, for example, and I go through several a day) and then preparing and juicing and cleaning … it takes up a good chunk of time each day trying to fit it in around the appointments. So as much as I’d love to offer up the juice to guests – NO! I told Ben he has got to stop overselling my juices on this blog, because I’ve had to go all Scrooge on about 5 of you so far and say “No, you cannot have the juice!” But I can recommend a good juicer for you if you want to try it yourself.
Anyway, that is it for now. We will be off to the radiologist tomorrow and hope for some pain reduction soon. It will be so nice for Ben to be able to get out a bit.
Hug your family. xox