Update on #Cancer: Battle Nears An End

(Again, if you spot typos let me know.)

Sooo...this is where we stood at the time of the previous cancer update: I went back on the Avastin (the chemo that was stopped due to the swelling in my feet and legs as well as the protein in my urine). I had two treatments, on 9/7 and 9/14. At the time I decided, after doing some reading, to take a magnesium supplement to try to limit swelling. Don't think it had any affect other than making me pee even more than I was.

Today I saw my chemo oncologist. The swelling has returned. The tests on my urine show the protein leaking into my urine again. So we're stopping the Avastin.
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Meanwhile, I am having increasing difficulties with walking and using my lest hand for...well, anything...I've had a few falls. which were mostly embarrassing. But in the last two days I fell outside, in basically the same spot: near my mailbox. Yesterday I got lucky because I didn't have my phone on hand, but a couple of neighbors eventually came outside and helped me up. But my side is kinda sore and really, really bruised. Today's fall left me bleeding from my knee and elbow, and happened even while using my walker (clearly I haven't mastered the use of this device). My sister-in-law had arrived to take me to the doctor. One of the same neighbors who aided me yesterday happened to come outside again. I called my brother who works close by. He was here quickly. And then the mail carrier arrived as well and helped. "This isn't in your job description," I told him.

In talking with the doctor after the decision to discontinue the Avastin, the only option he could offer to continue trying to treat the tumor was a chemo in pill form, which was actually a standard method of treatment for glioblastoma before they started using Temodar and Avastin (both of which were unsuccessful in my case).

The doctor left me and my sister-in-law alone to talk. We both broke into tears (I'd like to point out that this was the first time in this whole thing that I cried. And that it's happened a couple more times since.)

So I made the decsion to end all further treatment on the tumor. The doctor said there's no way to give me a specific prognosis as to how much time I have. Just basing it on averages of other glioblastoma cases he offered a guess of six months.

Plans were previously made for me to move in with my brother Steve and his family. They have an extra room in their house that is almost like an apartment so I feel I'll be comfortable. They are getting things set up and the hope is the move will take place this weekend. I don't have to move much immediately -- mainly clothing and some things I may need immediately.  The rest of the contents of the house I can take some time sorting (what to keep/donate/trash) as my cousin, who is buying my house as is and will renovate it and eventually move in, is giving me as much time as need.

 I am also slated to speak to someone from hospice care, although at this point I'm functioning well enough (hard to beieve but it's true) that I won't need, say, nurse's visits on a regular basis. I think we'll be talking about equipment I can get (such as a wheelchair?)

(BTW the Duke University clinical trial was a no-go.)

I know this is bad news and a lot to process. But the good news is I still have my right hand for  one-handed typing (minds out of the gutter) and my mind stilll works. So I intend to blog, tweet and complain about your behavior on Facebook for as long as I can.

Brief Update on #Cancer Front

When I saw my chemo oncologist on the 26th, he presented me with another treatment option: going back on the Avastin via IV. This was the one that was stopped due to the swelling in my feet and legs as well as the protein in my urine. Since all the subsequent tests on the kidneys turned out fine, and the Avastin seemed to have the most success in slowing the progression of the cancer cells, the doctor felt it was worth a try. So I had my first biweekly IV Wednesday. If the swelling returns and I'm taken off the Avastin again, well, I honestly don't know what happens then.

I contacted Duke University about their clinical trials, and because I have multiple tumors now, even though the cell groupings are close to each other, I don't qualify for the much-hyped polio virus-turned-cancer cell killer, or any of the other trials, save one. For that one my tumor has to be something called EGFR (Epidermal growth factor receptor) amplified 5 fold. My oncologist is going to check the pathology from my previous surgeries tested to find out my number, though he said the number can change over time. The only way to know the current number is to test a new sample, which would require another surgery, which, as I explained previously, isn't really an option after having two already. So I think this is a long shot at best. If I did somehow get qualified, I'd have to go down to Duke every 2 weeks.

Not good news on the cancer front

Again, if you see weird typos and such, let me know so I can fix them.

So in my last update I talked about the aftermath of the MRI I had at the end of April. During May I went through a brief round of radiation. I had 10 total treatments that only lasted maybe 10 to 15 minutes each After that I started the next chemo treatment, this medicine being called irinotecan. This was administered via IV (and it took about THREE hours each time) in a regimen spread out over a few weeks. It was done on Wednesdays. First they did it on back-to-back Wednesdays, then they'd skip a week, then they would repeat the process. The day after each second Wed. treatment I got an injection of a medication designed to keep my white blood cell count high.

Luckily, unlike the previous chemo, this one did not cause my legs or feet to swell. In fact, the previous swelling went away thanks to getting off the Avastin as well as changing my diet to reduce my salt intake. However, in the last 2 or 3 weeks or so my diet has very much gone to pot. I've been eating more junk food and red meat so my weight has come up a little bit; also, I think my feet are swelling a little bit so I really have to get control of what I'm eating again. I'm due to see the nephrologist in about 2 weeks. There shouldn't be any issue with my kidneys, though.

Which brings us to my latest MRI on Wednesday. I saw my chemo oncologist Friday. He had the results and they were not good. The area which showed the cancer cells in the last MRI still shows cancer cells. And he said there are more cells growing in kind of a ring pattern around that area.

He spoke to my radiation oncologist, who said they really couldn't do any more radiation because of the two previous rounds of radiation; there's only so much radiation that they can do to the brain, and it doesn't seem to be helping anyway even if they could do more. They also said they feel surgery isn't really an option since I've already had two in that area, though I have the option to a talk to a neurosurgeon about it.

My chemo oncologist said he reached out to Penn Medicine to the doctor I saw previously to see if I qualified for the clinical trial.(By the way, I did not qualify for that particular trial based on my genetic testing.) So he sent her an email to see if there were any other trials going on; he has not heard back from her yet.

He also suggested I should contact Duke University because they have a lot of activity as far as trials for treatments of glioblastoma. CBS News did a report on one a while back that showed great promise. I shared it on Facebook at the time. I don't know if I can get into the trial or any of the logistics as far as how many times/how often would I have to go down there and for how long.

In the meantime my chemo oncologist said there are two more chemo drugs I can try, but they don't have much of a track record for treating glioblastoma. One that seems to be slightly more promising would be in pill form given every six weeks.The other would be given intravenously every 3 weeks. My thought is right now to start on the pill form of the chemo and then try and see what clinical trials are available either here or at Duke in the meantime, but I have to let the doctor know of my decision when I see him on the 26th of this month.

I had a suspicion that it was not going to be good news just because some of my issues have seemed to worsen recently. My left leg has been still kind of weaker, dragging my foot when I walk. The forefinger and thumb on my left hand are still giving me problems: gripping things, typing and holding my phone, getting out of chairs or using a toilet in the restroom --all of this has really become frustrating. To hopefully alleviate of this, my doctor increased the dose on the steriod Decadron (it had been stopped for a while and then I went back on it but at a lower dosage). So incompetent customer service people, Jehovah's Witnesses knocking at the door, ignorant drivers who don't like stopping for pedestrians with the right of way -- get ready for more ROID RAGE!

Neverending Story -- new #cancerisabitch update

(Forgive any typos and the like if you spot them, and let me know so I can edit. I've already edited but I probably missed something.)

It's starting to feel a bit like piling on.

As previously mentioned here, my chemo oncologist stopped my Avastin treatments and referred me to a nephrologist to check on my kidneys because of protein in my urine. I also had a followup with my radiation oncologist the next day (April 26). I updated both on things like the leg swelling and weakness, general tiredness, the return of the focal seizures in my face, and some reoccurring problems grasping things with my left thumb and index finger and speech (stumbling on words, etc.), all which indicated that the glioblastoma was possibly reasserting itself. The two oncologists arranged to have me get an immediate outpatient MRI that very day. Sure enough, the tumor is starting to grow again.

I saw the radiation doc on the 27th. She said that having had two surgeries already, and especially with it not being extremely large yet, another surgery is not really an option now. She (consulting with the chemo doc) recommended another round of radiation, but only for two weeks (Mon. thru Fri.), and in a more limited area of the brain, followed by a different chemo treatment. To alleviate the issues I mentioned above, I was placed back on the steroid decadron. They (and, I assume, the lack of Avastin) have had positive effects. My legs, although there's still swelling, are stronger again, and my fingers and speech (and typing) are improving. And the extended-release version of Keppra the seizure specialist put me on (see last post) has completely stopped the facial twitching. For now, at least.

Today I saw the chemo doc, followed by, finally, because I had the wrong number for the office for a couple days (rolling eyes), the nephrologist.

Chemo doctor said that after I have the radiation (to be scheduled -- phone call tomorrow), I will start on irinotecan via IV. Because of side effects (possible nausea, diarrhea -- OH JOY! -- and lower white blood cell counts) he wants to lessen the amount of each dose and spread them out over a period of time a little. Maybe one dose one week and two doses a couple of weeks later, or something like that. To be determined.

He also said he tried following up with the doctor at Penn to find out if I quality for the immunotherapy vaccine clinical trial, and they haven't gotten back to him. He feels this is a sign that either I didn't qualify based on the genetic testing or they didn't have room, or something, because otherwise they would have likely contacted me quickly to get me into the program. (They also never got back to me after my recent followup. Another phone call tomorrow.)

As for the nephrologist, he really believes that the biggest factor in the protein in the urine is not from a kidney problem but basically some combination of the Avastin, my diet (way too much sodium) and the recent doubling in the dose of my blood pressure medication amlodipine. This is also an issue in my swollen legs. He thinks I have an extra 30 pounds of weight just from that. He has given me a prescription for another blood pressure med (one he takes himself, he said), and told my to cut my amlodipine back to where it was. He wants me to restrict my sodium intake, cut out red meats (NO MORE BURGERS??? NEVAH!!!! but I will cut back a lot), eat more chicken and fish, egg whites, etc.

One week after I'm on the new med he wants me to have blood work done (the fasting kind) and he also wants me to have an ultrasound on the kidneys. I follow up with him in August. If there are still problems at that point, he'll want to do a kidney biopsy, which would be a needle into my body to remove kidney tissue.

Okay, I think that covers the facts and figures, so to speak.

This feels like it's getting more and more complicated. So much to do, so much to keep track of, and I'm beginning to worry about whether I'll actually get to do some of the fun things I was hoping to do during the summer, like a few days at the shore, some Broadway shows in NYC, maybe a Phillies road trip. Sure, going to the downtown parks and festivals and the like are great, but I need more. What I really need are friends to do some of these things with. The people who I know would go places with me all live too far away. The people who live here are just acquaintances, or just Facebook "friends." And my family is great, but it's not the same dynamic. So if any of y'all can help me out here that'd be awesome.

Also, I swear I'm gonna get those Birthday Month Disco posts done.

And also again, READ AND SHARE MY RECENT POLITICAL POST, DAMMIT!

Update: The Avastin Is... #cancerisabitch

So I had my followup MRI two weeks ago. I called the next day to get an appointment with my neurosurgeon...

"The first available appointment is on March 1st with Dr. Liebman."
"I don't know that person."
"Well, Dr. Barrese is no longer with his practice."

:o

The first time I saw Barrese he commented that he had joined so recently that he didn't even have new business cards yet. And just like that, the guy who performed my second surgery is apparently gone.

Fortunately, it appears I won't be needing a third surgery just yet. Today at the oncologist's office the nurse practicioner (I saw her instead of the doctor for some reason) said that the newest MRI looks good. There's no real difference from the previous one and no evidence of a new tumor yet. I won't need to add a second drug to the Avastin treatments at this time. For now, life goes on as scheduled.

P.S. To finish the title of this post: ...working. :)

Post-Second Surgery #cancerisabitch Update

Previously on "Joe's Adventures in the Medical System..."

Anyhoo...my second surgery ended up not happening until Friday, November 20th due to a combination of insurance company bureaucracy and a primary care doctor's office that was either closed when it's normally open or whose staff is a touch incompetent when turning their phone system on and off. Oh, and on Thursday the 12th, the night before it was originally set, I got a call saying they had to cancel because an important piece of equipment (that helps guide the surgeon to the points he needs to work on) was malfunctioning and had to be repaired. So instead of surgery they had me get another MRI to make sure it was as current as possible. Boy, weren't they surprised when I showed up for work the following Monday!

The surgery went well, and the immediate aftermath (meaning, when they woke me up and took me back to my room in the Neuro ICU) was infinitely better than the last time. Much more comfortable. Also, much (but not all) of what they saw on the MRI was actually scar tissue caused by the chemo pills and radiation treatments during the summer. The next day, after the physical therapist visited and I passed her walking test, the weekend neurologist covering the unit suggested I was well enough to go into the "step-down" unit (as described here). I made it quite clear that it was not happening. I believe my exact reply went like this: "NONONONONONOIWILLNOTGOTOTHESTEPDOWNUNITIWILLSIGNMYSELFOUTIFIHAVETO"

So I was actually moved to a regular room instead, and the next day I was released. Since then I've been at home, resting or going to the movies or doing a bit of shopping when my energy levels allowed. I had the neurosurgeon's office fax a letter to work informing them of my followup exam date (which is tomorrow) and that a determination would then be made as to when I can return to work. (Ugh.)

Meanwhile, today I had followups with both my chemo and radiation oncologists. When my chemo doctor explained what he felt had to be done next, I realized I was not gonna remember all of this sufficiently to inform the family and friends (and whatever strangers happen upon this). I was actually about to ask my doctor for paper to write on! Then I remembered my Galaxy Note 4. The one that came with a pen. He kindly gave me a minute to remember how to write a note on the screen.

Because the tumor did begin to grow again (and the pathology report did again show it was cancerous, BTW), he felt that the chemo and radiation did not work well enough and that, at this time, there won't be a resumption of chemo pills. Instead, in two weeks I will start getting a drug called Avastin. This will be given intravenously every two weeks (So I'm going to be working partial days every two weeks). Avastin, it is hoped, will slow the growth of tumors. The treatments will continue as long as it's working. It doesn't cause any nausea/vomiting but there is a chance of blood clot issues. They will need to monitor that and I'm supposed to try to be as active as I can, but for now I won't have to go on baby aspirin or blood thinners. The chemo doc wants a followup MRI in about 2-3 months. He thinks my neurosurgeon may want it sooner, though. Either way, if the Avastin by itself doesn't produce results, he would then want to add another drug to the mix and that one would have nausea/vomiting side effect potential. So let's keep our fingers crossed.

The radiation oncologist says there will be no further radiation at this time. The current information doesn't indicate it would be helpful. She said that, depending on what happens with the Avastin treatments, there may be some radiation treatments but only on a small pinpointed area. Nothing for now, however.

Further updates as they happen. Or eventually. And, once again, I thank everyone who has been praying and wishing me well and all that good stuff. It is very much appreciated.

More Surgery. Yay! #cancerisabitch

I guess the title says it all, so...goodnight, everybody!

(Pauses, notices no one leaving)

I guess not. Oh, well. So after the six weeks of radiation and chemo pills ended, and I had to wait 6 to 8 weeks for the radiation effects to fade before having another MRI, and in between I screwed up the next round of chemo pills because I was supposed to take a dose a day for five days in a row but instead skipped a few days before taking a second dose, I finally got the followup MRI last week and visited my neurosurgeon today.

The MRI showed that there's a tumor that's started to grow in the same area where they removed it the last time. It isn't very large but it's large enough that it can be removed. The doctor said that the aggressive approach is to remove it now. Otherwise we can wait and monitor it with more scans while continuing with chemo. I'm going with the aggressive approach.

But part of me wonders, if it's going to keep growing back, possibly quickly, what would be the point of having surgery multiple times in a fairly short period of time?

So I'll be scheduled for surgery on or about the 30th. That would mean I can't attend the huge Temple-Notre Dame game on the 31st. And that last sentence, referring to a huge football game involving an unbeaten, nationally ranked Temple team, is about as surreal as my life right now.

Another Health Update

Picking up from where I left off here:

Yesterday, I completed my six-week radiation treatment at the Cancer Center at Aria Torresdale. Every day, Monday through Friday, I showed up and got zapped. Most of the time I was in and out very quickly, but there was a stretch of a few days about halfway through in which there were issues (either with their machine needing a replacement part, or emergency cases being sent from the main hospital to the Cancer Center). One day I had to wait over 90 minutes. Last two weeks or so were an absolute breeze. Once a week I saw the radiation oncologist for a brief checkup, including looking into my mouth for signs of thrush...thrush! Heh. Everything has checked out fine, though.

Here I am on the table. They were kind enough to take a pic for me. I thought it might be weird but it seems I'm far from the first person to ask. The mask on my face was molded prior to my first treatment. It's snapped into the headrest and is designed to keep my head and face aligned properly, as the radiation is focused on very specific targets.

On the chemo end, I had issues with the chemo oncologist's staffers and/or the pharmacies dispensing my chemo pills (sort of described here). After getting all of that corrected, I took the chemo pills daily. Again, I saw the oncologist (or physician's assistant in a couple of cases when the doctor was on vacation) weekly. They took blood at each visit to check my cell counts. Again, everything has checked out fine. I am, for now, finished with the chemo pills for a while.

I'm very happy to report that throughout this time I've had no nausea or vomiting. That in itself has made my life much easier. Nor, to my knowledge, did I have any short-term memory loss. As far as I can tell, my level of forgetfulness hasn't changed. I mean, the t-shirts shown at the end of this post were both purchased before the health problems began. However, my hair did start falling out. It was pretty short to begin with once I finally got a haircut to even out the shaved-for-surgery part with the rest of my hairline, but when there was hair on my pillow two days in a row I decided it was time to keep my head shaved for a while. I'm sure you've seen various pics on my social media already, including the one where I compared myself to Lex Luthor, but I thought of another one, which is a better match because of the facial hair and glasses (and cancer diagnosis, too). Separated at birth?

 

The next steps come towards the end of September. I have followups with the chemo oncologist on September 23rd where we'll set up the next round of chemo. The general plan as I understand it now is to increase the dosage I take, but I'll only take it a certain number of days rather than on a daily basis. On the 30th I go back to the radiation oncologist. Between the two, we'll have to determine the time I get my followup MRI. I saw the neurologist last week and he said that they have to let the treatments work through my system so the followup should be about 6-8 weeks after the last treatment. The other day the chemo doctor said that it should be 2-3 months. (Two months is about eight weeks, of course.) I explained how I felt that, when I was originally thought to have had a small stroke, it took new symptoms and hospitalization for me to get a new MRI in June. I feel that had I had one in May, when I initially followed up with a neurologist, the tumor would have been found sooner. So when I go on the 23rd I will be very clear that I want the MRI done as early as possible. Eight weeks from yesterday is October 23, so I'll want it done very close to that date, if not earlier. After that I'll visit the neurologist again and I guess I'll have a better idea of my long-term prognosis.

On my diabetes situation: I had the A1C test done again in mid-July. My A1C score (8.4 or 8.6, I forget exactly, back in April during my first hospitalization) was down to 5.7 -- barely above the level where you are considered NOT at risk of diabetes. I'm still on the diabetes meds and watching my carbs. Maybe, with the passage of time and continued good results, I'll be able to get rid of those meds as well, but even if I don't, that's okay. My weight is down to 225 (undressed, add about 5-6 lbs. when I'm fully clothed) and I am comfortably wearing pants with a 40 waist. I've been as high as a 48, and was at 44 prior to April. I swear, at some point if I try on pants with a 38 waist and they fit, you will hear my screams no matter where in the multiverse you are. And even if I stay where I'm at, the fact that I am being careful with the carbs but still having some of the snacks I like (portion control, people!) makes me feel confident that I will never again that much weight. I've gotten rid of a lot of my larger clothing and will do some more in the coming weeks. (That reminds me: I have to get new dress slacks soon. Shorts weather won't last forever.)

So now my schedule is completely free until the 23rd. I can travel (well, depending on the cost) again! That is, unless I get called back to work, of course. If I do get called back (which isn't guaranteed; it depends on how many jobs are available and how many ahead of me choose to return, as I'm last in seniority) it shouldn't be within these next couple of weeks. I'm a bit torn. Part of me wants to be called back right away because the other two times I was hired it was after everyone else started and I had to be trained/retrained on my own (or I basically read the stuff myself) and it made doing the job more difficult for me in a lot of ways. On the other hand, if they don't call me back I can finally file for unemployment at the start of October.

For the most part things have gone so smoothly, and I'm even getting things in order (such as getting my comic books boxed up, all of my personal papers organized, getting rid of some of the crap in my basement, etc.). Due to a combination of the structured schedule (radiation every weekday at noon) and, to some extent, my meds, I have become one of the things I abhor the most: a morning person. :) That has helped me in the above-mentioned tasks and given me more time to get to more movies, a few Phillies games, and other local excursions.

Again, I can't thank everyone enough for the kind words, wishes, prayers, thoughts, vibes, jokes, etc. They are very much appreciated.

Just one last thing, because this has truly, beyond everything else, angered me.

I had 30 radiation treatments. 30. THIRTY times I had radiation being zapped into my body. And NOT ONCE, in all that time, did a spider show up and bite me. Not once!

I WANT MY SUPER-POWERS, DAMMIT!