A little radiation, a little vacation, a little HIFU, a not so little bit of pain

I told myself I wouldn't make this a rhyme;
Yet for some reason I can't help but write in metered time.
It's been almost a month since we last updated this space,
But we all know this is not some sort of race.
I think my syncronicity has reached it's peak,
So I'll stop this fun and provide the information you seek.

So here goes the dump on our adventurous last few weeks.  The Stivarga has been rough on Laurie as it's wrought havoc on her blood pressure and she's also having to take blood thinners still due to he blood clot (which is almost completely gone, but she may be on the blood thinners for a very long time; we will see).  For those who have followed us on FB most of what is here is familiar.  I actually took my long post from Friday and used it for a large part of what follows.

Laurie and I had been planning an 8 night trip to Hawaii in September.  We went, but it wasn't without a little adventure before we left.  The Saturday before our departure (the following Friday) Laurie was in extreme pain in the area that coincided with a noted bone metastasis.  She tried a couple of different pain medications to no avail.  Sunday we got up and the pain was continuing, so we headed to the El Camino ER.  They did an MRI and the ER doc said he thought it was just muscle pain and that it wasn't related to the metastasis.

Monday our GP asked Laurie to come in for a follow-up (we love Dr. Kwok and how she makes time for Laurie).  While there Laurie had a flare up of the pain.  Even before the flare up Dr. Kwok had determined this was more than muscle pain and started calling Dr Ghanouni at Stanford to see about HIFU and Dr. Sinha our radiation oncologist to see about radiation.  On Tuesday Laurie made 2 trips to Dr. Sinha's office.  One to plan for the afternoon and the second in the afternoon to administer radiation to the bone metastasis.  This was a really high dose and was the equivalent of 10 treatments all at once.  Dr. Sinha and Dr. Kwok really wanted us to head off on our vacation.

As the week went on Laurie figured out how to manage the discomfort and it was slowly getting better.  We managed to pry a wheel chair from the insurance company (no small effort) and along with Laurie's cane we headed off on our trip (naturally we had our luggage to).  Thanks to a good friend of ours who loaned us a TENS unit Laurie was able to manage the 5 1/2 hour trip to Oahu.  [I'm not going to go into the details of the trip in this post as it will just make things too long.  I'll try to do another post in the next couple of days with the details of the trip.]  By Tuesday we had moved from Oahu to Kauai and the discomfort was almost completely gone.

Like the last time Laurie had radiation on a bone, eventually the discomfort started to return.  Fortunately, Dr. Ghanouni was able to get Laurie in as his second case for HIFU for this past Thursday (October 9th). Everything went well, but we expected that Laurie would be in a good deal of pain for the several days at least. Dr. G said that it could take a week or more for the swelling to go down. The good news is that the cancer that was in the bone there is gone. He said there wasn't an interim scan after the radiation, but the MRI after he did his work showed no activity. He hit the lesion really hard, so the muscles got heated up too and they are now quite angry.  Laurie also got the chills as she came out of anesthesia and apparently had some pretty sever shaking.  It caused a lot of pain to other muscles that is just now subsiding.

We got good news and bad news as he used the MRI to look around a bit. Several spots that Laurie had discomfort in are negative. It's a mystery about the discomfort in those few spots, but it is good to know those are not cancer issues. He also took a look at the left ureter which we know was showing indications of backing up (causing hydronephrosis). It does NOT appear to be damage from radiation. Unfortunately, there's a tumor in that area and it's thrown some tendrils out to the ureter and that is what's causing the problem. We don't know what the answer will be for that. We may be able to cyberknife it and maybe put a stent in for the near term. This is a discussion we need to have with the oncology team at Stanford. Laurie is not a candidate for surgery.

We also found that something in the medications or pain management strategy has begun to impact Laurie's creatinine levels. This was a real concern and almost derailed our plans for the HIFU procedure. This can happen due to the blood pressure medication that Laurie has been on. It can also be due to the intake of NSAIDs, which Laurie had been taking until recently to manage the pain that the bone metastasis was giving her. We are hoping that by dropping one of the blood pressure medications and stopping all NSAIDs her creatinine levels will return to the normal range. This will enable her to begin taking NSAIDs for inflammation. This is a real problem for the discomfort she had/has from procedure. Normally Dr. G would have given her an anti-inflammatory to help with the muscle inflammation due to the heat of HIFU. She'll just have to manage it with pain medications until her muscles become less angry with her.

Laurie is getting up and around more and more each day.  She's not able to sit for long periods of time yet, but she's at least able to sit and stand up from a chair on her own now.  For the first couple of days she needed assistance as all of her muscles were both weak and sore.  Now the pain is focused mainly on the muscle next to where the bone was treated.  The rest of her muscles seem to be getting better now.  Laurie is eating normally for the most part.  She's not eating large servings, but she's doing healthy snacking and keeping the food and liquids going.  This is really important as she needs to take food when she takes her pain medications.

Now we wait and see how she feels over the next couple of days.  We still need to deal with the ureter situation and it doesn't appear that the chemo is doing much to help that situation.  We'll post more information as we get it.  Laurie's next oncology appointment with Stanford is Oct 20th.

The Clinical Trial

Well I did get accepted into the clinical trial but unfortunately I won't be getting the new trial drug. I'll be getting the control drug, Stivarga. Stivarga is taken as pills, four per day for 21 days then 7 days off. Repeat.

What they don't tell you is that my oncologist said the side effects aren't really worth the benefit. It only halts tumor growth for a time, and doesn't cause tumor shrinkage. And it doesn't last very long. And the overall median survival for Stivarga was 6.4 months vs. 5 months for placebo. So, yay, I get another 6 weeks tacked on to my life. :-)

Here's more info about Stivarga: http://www.stivarga-us.com/index.html

I copied the following quote from here: https://www.centerwatch.com/drug-information/fda-approved-drugs/drug/1227/stivarga-regorafenib

The median overall survival was 6.4 months for the Stivarga arm versus 5.0 months for the placebo arm (p=0.0102). The median PFS was 2.0 months versus 1.7 months and the overall tumor response rate was 5 (1%) versus 1 (0.4%) for the Stivarga arm versus the placebo arm, respectively.

So as you can see, it's not a great drug. It may barely work. But right now it's really my only option.

It looks like it can cause bleeding problems. I'm on a blood thinner so, yay.

It can cause blood pressure to go up. This morning my blood pressure was about 150/100, on average, at rest so I started back on the blood pressure meds (which I have here) immediately.

I've already noticed that it makes my eyes dry and my throat feel funny, like it's dry too. I've read it can cause your voice to go hoarse.

I guess that's all I have for now. I'm not thrilled. Let's see what happens.

Quick Summary of Now

I wrote an email to someone yesterday with a quick summary and I realized that if I copied and pasted it here it would make a pretty decent blog post. So, here it is:

I should update my blog but when I haven’t been busy (we were gone for long weekends the last two weekends) I've just been too tired. I stopped chemo in July because it just wasn't working anymore. I now have mets in my liver, lungs, and bones. Also was in my cervix but I did radiation to take care of that, plus one of the bone spots that had been painful. It was still painful so I did another type of treatment (HIFU) to treat the pain and as soon as that happened my right leg became very painful. I had been limping since March, so my pelvis has become twisted and my muscles were going on strike. I’m now doing PT to help address that. In the meantime, because of decreased activity and just having cancer, I got a blood clot in my left groin. We were in Mendocino last weekend and after the long drive home I looked at my feet and saw that my left ankle was quite swollen. I knew right away it was a blood clot. So, we went to the ER, got an ultrasound to confirm it, and found it in my groin. Now I’m on blood thinners. My ankle looks better though my leg is still swollen. I’m wearing a compression stocking to help out with that. 

With all of this I've just been so beat and exhausted. Every day is a new day with tiredness and pain. What I mean is that it’s not like the day before. Yesterday (Saturday) I was so fatigued and painful in so many spots and today I’m much better. I helped a lot in removing the chicken stuff today and so far haven’t been in any pain. It can hit at any moment. One hour I will feel like my old self, or close to it, and the next I’m in bed crying because something hurts so much. And I get shivering spells where I’m freezing cold, teeth chattering, even though the room is 70 degrees. It’s all so foreign and frustrating for me. 

This coming week, though, I will start a clinical trial for a new drug up at Stanford. It’s already gone through Phase 1 and is being fast-tracked to approval. So that means they must have seen some promise. I hope it works. If this one doesn't, there’s another trial starting up in the near future for something else.

Also as an update, I had a CT scan and bone scan last week and a PET scan today. I don't have the PET results yet but the CT scan showed activity in my liver, lungs, and bone. The bone scan showed two new-ish locations (untreated) and also confirmed that the one in my right pubic ramus has been properly eradicated. It also looks like the radiation to my uterus/cervix may have caused some damage to my left ureter causing it to narrow. This is causing some hydronephrosis to my left kidney. This means it can't drian into my bladder as well as it should be and pressure is building up there. I hope the ureter can return to normal on its own allowing the kidney to return to normal as well. I've asked the Radiation Oncologist if this is likely (via email) but I haven't received a reply from him yet.