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Oct 19, 2017 07:25PM
Every day I think, we think can't get much worse, and then it does.
The Intervention Radiologist seemed smart (he does not look it, don't judge by the cover..) and caring. He was extremely concerned, he said and showed it to me on the screen, D did not want to be in the room, he showed how the tumors took 50% of the liver, pretty much the whole right lobe, the left is not so bad comparingly. First to the bottom line, he called the Hospital and cancelled some of the ppl he had on schedule for Monday, and told the assistant THIS is urgent and get her in. He said there is still a very small window, if it gets worse no one is gonna wanna do it.
The procedure: Let's say, Monday, it would be something like an angiogram, to make sure that no physical aberration would interrupt the process, and that there is no pathway to the lungs ( so this radiation does not get into the lungs)etc... if she is approved, then they would order this treatment from Syrtex in Australia, it is specially dosaged (my word) to the person, and it is time sensitive, in other words, it should be arriving about a week after the order, and they will call exactly what time she has to be there, then they insert this high radiation thingy, he explained but i can't relate back, and she is "suppose" to go home the same day. BUT she cannot be near the children for at least 3 days.
So of course she is very upset about that, her life is really being turned upside down. My SIL said he will tell the kids they are going away for 3 days and I'd move in, yes, but they are middle of the school year, they won't like it, they will smell a rat.
I asked IR do we have an option? He said no. Life would be much shorter. This monster needs to be stopped. The liver metabolized the chemo, and if she will need chemo of some kind, if it won't do the job there is no need for the chemo.
Going back to the AM, long long visit with new RO, she could not believe the amount of mets. Damaging ones at that. The orbital area, is in danger of causing visual loss it's that bad, nerves on the lateral is causing numbness, her shoulders, other lesions that are pushing into the skin on the chest, and much to her concern the thoracic she is very scared what she will find when she sees the MRI specific to the spinal area that she is ordering, she is afraid she will see dangerous compression. NOW, this girl was being cared for by top docs in top Hospital. I have an email i just reviewed from June, RO telling me she reviewed THE REPORTS, and it's stable. No it was not stable, and she did not bother looking at the images herself, i think, because this is a train wreck it did not happen overnight. I can't even, because i'll explode. How could they? New RO says you can't just treat little pieces always, you gotta look at the big picture. Conservative is not always good. And then I ask you, they know the situation, just do it damn it, what are they protecting her for 20yrs down the road, she told them this hurts this hurts, and they kept saying systemic systemic, of course you can't do every bone, BUT her pictures are horrible.
So new RO says oh this urgent, so i called her in the PM, and i told her you told us this is urgent, but IR is saying the liver is urgent. So she said liver is MORE urgent. She'd give her a break of one day after the Y90 and then she'd start her on extensive daily Rads for up to 3 weeks. Mind you, IR told me that after Y90 there will be great fatigue. I asked him what kind of fatigue, he showed me like the sleeping kind! So hmmm how are we gonna drag her to Rads....I don't know.
Grannax does any of this ring a bell for you? Did you go through the same steps? Was it very tiring after. I wish we could all hear from more ppl that went through it.
I asked how many he has done? He said about 150 p/year. The truth is from what he says, we don't have the luxury of waiting for appointments to get other ppl and delay this. And the other Rads are being held back because of this.
She is taking the Neratinib it's causing abdominal pain, i hope she could tolerate it.
Yes, my friends, honestly it's unthinkable.