Sutent

Three days and three pills and no side effects yet! That's a great start since you can have immediate reactions. Not it's a "wait and see" if anything cumulative starts cropping up which can happen now or far later.

Changing meds

My scan from last week was not good so they are taking me off the clinical trial of Avastin and Velcade and having me switch to Sutent. Sutent is a "first line" drug of kidney cancer but can carry some difficult side effects. When I was diagnosed last year it is what they prescribed for me while recommending that I go to Dr. Quinn to see if I qualified for IL-2. I'll start in a couple weeks. I could get none or all of the side effects but a couple would be the most common. Well at least I don't have to get IVs put on me twice a week any longer!

Scans

I got my CT scans and I have no new tumors, one that stayed the same, 2 that shrank and 1 that grew. Dr. Quinn says that this is a good scan and the sort of reaction that they would hope to see with the treatment. Not a cure but suspension of advancement. Very good news: Basically it has been a year and treatment has kept me as I was in 2009. It can go on like this indefinitely but if it fails at some point, there are many other medications to try and many in the works.

Side effects diminished!

My niece Debbie suggested that overdosing Motrin a bit, 3 tablets a day twice a day, might help after a few days since it has helped her and since we are closely related. I asked the doctor's assistant if Motrin was alright and got the "go". After 2 days of taking them it did help a lot and so here, a couple more days later, I have much of the joint pain reduced and can function much better. Thanks Debbie!

Cycle 2

Halfway done with cycle 2 and halfway to my next scan! My only side-effect is a lot of pain in the joints. I'm still up for walking though.

Cycle 1 done

I've had the first cycle of my doses for this trial which was 4 visits to the hospital. One took hours and the others about 1 hour each. The shorter infusion seems to be giving me joint pain and maybe some weakness. Like having arthritis... I'm still doing my walks and doing some work but getting up and down is a bit shaky. I might be good enough for a marginal game of volleyball but we'll see.

As time goes on the IL-2 treatments in April-May will have those side-effects go away so maybe this current problem will fade some. On the other hand, cumulative effects could get worse. Cross your fingers!

The next cycle starts Aug. 2 with a long day: give blood/urine, wait for results, talk to the doctor and get a 2 hour infusion. Then back to the 3 visits over 21 days that are short visits.

Steroids!

I emailed the doctor as to what in the new treatment would alleviate my remaining IL-2 side-effects and he said that one of the pre-drug drugs that is given to minimize the Avastin side-effects has steroids.

First new treatment

The clinical trial that I am now trying will go till I have a bad scan (checked quarterly). It's Avastin and another drug (technical names Bortezimib and Bevacizumab). One hits tumor cell division and one hits tumor formation (onto existing blood vessels). I have to go in 4 times every 21 days and get an infusion (IV). One visit will last about 4 hours for a blood draw, doctor visit and 90 min infusion and the other three are straight to the infusion for 30 min.
First treatment was yesterday and I feel almost normal waking up today. I feel about like Pre-IL2 like I felt in late-Jan almost recuperated from the surgery. Very interesting! Hand numbness is reduced (which can get worse from this trial!), grip is easier to do and my weakness feels reduced. Odd but I'll take it!
Here's a link to the trial web page: click here.
Since today is the day that I might have started to have new side-effects from the new treatment, it is very encouraging that, instead, I feel more normal than before!

Scans after IL-2 treatment

I talked to Dr. Quinn on June 30 and the results on my lung scans was mixed. Some shrinkage and some growth. The ones that grew had not been affected by the first rounds in Feb. or the treatment in April-May and so the doctor doesn't think they will be helped and to go over options. Surgery will not work well because there are 7 small tumors and would require taking too much of my lungs out. We could wait and observe (for more IL-2 affects) but that could be dangerous. We could take one of the pills available. Some attack the cell division and some attack the formation of veins that tumors use to grow. They have a trial going that involves two medications. One attacks cell division and one attacks the tumor connecting to the veins.

The trial involves one medication by injection and one by IV infusion so there would be visits to the hospital. It's only open for a set time period so it won't be available some time in the future. There are many possible side effects but most people have fewer than people taking other chemo therapies. If they don't find improvement in the first scan in 3 months than I'd go off the trial and on to one of the kidney cancer pill treatments. We think the trial improves my odds a bit so we're going to go with it. Depending which part of the trial they put me in, I will have to visit the hosptial 2 or 4 times a month.

I get brain and bone scanned July 2 to make sure I don't have anything going there that would preclude me from doing the trial. I take the first infusion/injection on July 7.

I'm still recuperating from the IL-2. My hands still have some carpo tunnel issues (numbness and inability to make a fist or hard grip) which may not go away and if that gets worse I'll get it treated. Strength is getting better but that is a slow process. Maybe I can do more than walking, like volleyball/racquetball, in 4-8 weeks. Assuming the new treatment doesn't weaken me which it might.

One day at a time! I feel pretty normal so doing my daily routine is easy.

3 weeks out

With 3 weeks passing since I got out of the hospital, I'm feeling better. I can take a daily walk now. I feel pretty normal except for being weak and having some numbness in my hands which gets worse sometimes or with use to hold things or type. The worst thing which was exhaustion with modest effort is about gone.

Post-hopital treat

Here's what I got, besides a new recliner, for enduring all this! It's a killer laptop with the fastest video card for games and a giant 18.5" monitor. Click here.

Scan

I get scanned 6/23 and see the doctor 6/30. Cross your fingers!

On the mend!

Hospitals are behind me for the foreseeable future and I'm getting a little bit better day by day but it will take many weeks to be up to par.

Out of the final IL-2 hospitalization!

I took a bad turn after my 4th and final dose. I had episodes where I could not breath and almost passed out. The IL-2 and general hammering of my body by IL-2 seems to have brought out a rhythm problem with my heart with the top and bottom half not communicating properly. They had to put in a pacemaker. This was very disturbing in that nobody in my family has ever had a heart problem although the procedure was very easy and non-invasive.
I'm out now but very weak from IL-2. It will be days or weeks before I can walk easily. Walking is a chore now since IL-2 effects are cumulative and I was not 100% when I went back in 2 weeks ago for week 3 and maybe 20% recovered when we started week 4.
Now it is time to wait and recover and see how it did!

Final IL-2 week

I've had 2 doses and they skipped one due to blood pressure. They've got the pressure up so we'll probably do 1 more dose. I'm weak and hyperventilate easily. I probably come home wed or thurs.

8 dose side effects

I got home pretty weak. I think it's from 20 lbs of water weight which will probably take a week or so to shed. Food tasted weird but during the night I made a quesadilla and it was good. I had not kept any food down all week so it's nice to see one side-effect go away. It's hard following the advise to drink lots of water when you have water weight but on all accounts that helps you shed it.

Apparently an hour after I left the internet went down at home. Tim called our neighbor Julia, who babysat me this week also (at the hospital) and she brought her IT skills to bear to find that while cleaning they had turned the power bar off that has the modem and router. Cheri (every night), Debbie and Dane also babysat me and they all did a great job helping me get through the experience. I only realized how good of a job they all did when Cheri had to work Friday and I was there alone hoping to get out ASAP (which ended up around 1pm.

That was actually dose 8. The doctor says that we're done for this week so now I have to recuperate enough to go home. Friday or Saturday I'd guess.

Skipped one dose but I got dose 7 at 7am.

Day 3

Blood pressure up and down. Weakness bad but not as bad as last time. Not holding food down at all. 6 doses so far!

checked in

We got checked in and hooked up. My first dose is coming up soon!

IL-2 part 2!

In a few hours I check in for the next round of IL-2. No more Starbucks coffee every morning! I've got my netbook and mp3 player packed up to keep me entertained with a bunch of podcasts and books downloaded to my newly improved player that now holds 16 gigs! I'm packing a lot lighter this time since I know what I'll feel up for while I'm weakened. Just when my muscles are coming back: kapowie...back I go. Darn. Or yay?

Today will be my last 3 mile daily walk for some weeks. Then its back to the recliner for tv and listening. I still have some numbness in my hands but it's much better. I'm typing now with no increase in numbness although my right hand fingertips are a bit numb. Endurance is still reduced but it had been slowly improving.

I had my last meal out pre-IL-2 yesterday with friends Bob Madore and Bill Newton. A chili-size burger at Keno's--it was very tasty and they were entertaining to dine with as usual. Cheri got me a cinnamon roll for my last home breakfast. After these two IL-2 weeks I'll have to start eating better for the long haul back to normalcy!

So will the side effects hit me right away and limit me to a few doses or will we start fresh and go all week?

Second phase of IL-2

My scan last week showed 5 tumors: 3 shrunk and 2 grew. The doctor suggest that I do the other rounds (week on, week off, week on) of IL-2. On 4/21 I will get a PIC line put in and on 4/25 I go into the hospital to get started. Doctor Quinn doesn't know if the problem with the doses lowering my blood pressure will come back again right away or at all but they'll give me what doses they can and as long as it kick-starts my immune system, which even a few probably does, then we should see results.

Partial response

I talked to the doctor's assistant and she said that I had a partial response to the treatment and that the doctor would like to proceed with the next round of high dose IL-2. There was some shrinkage and some that stayed the same. I go in today with Cheri to set the dates and get more details. And we'll have to hit Phillipe's french dip sandwiches on the way back!

Insurance

My insurance has seemed pretty correct about what it pays except one CT scan at the beginning (9/24/09). They redid it 6 times and it came back the same every time. Their rules are complex enough that the clerk you call for help would say that it was wrong and promise to redo it but it somehow came back unpaid every time. I finally filed a grievance when they sent a letter saying they were denying it and they came through and paid.

I've had a bunch of Explanation of Benefit forms come back for this year now so I need to fill in a spreadsheet to see how they look because a couple have some amount that they are not paying. It could be proper but I need to audit it.

Next phase

They scanned my chest, abdomen and pelvis. IV contrast and oral liquid contrast was used: ick. I'll see the results 4/14.

I still have low endurance and chest congestion so that is a bit worrisome going into the next phase but I suspect it's typical.

Side-effects still

Last week I had really bad arthritis as a side-effect for a few days. It was hard to even push to rise from a chair till I'd take Tylenol and then it completely went away for the whole day. That only lasted about 3 days. I'm walking about a mile a day but I still get weakness often when I first stand up that lasts for maybe 1/2 a minute. I have to wait for it to pass. I'm doing some work but it's hard when my fingers go numb after typing a little. Hopefully the symptoms fade out before I need to start the next round. On 4/7/10 I get scanned to see what the first rounds did for me and I see the doctor on 4/14 to get those results and see if I got on with IL-2 or get treatment options for other medication if the IL-2 did not work.

Side effects

The IL-2 had a cumulative effect with the first week still working on me during my second week. Shaking off the side effects has not been as quick as I'd hoped. Nausea and water retention both went away quickly. Weakness, lack of endurance and numbness in my hands is taking much longer. Darn.

Scan

April 7 I get scanned to see how the IL-2 did for me. I see the doctor April 14 for those results and to schedule the 2nd and final round of IL-2 or to move on to another medication that won't involve hospitalization.

Next up!

My blood pressure is back to normal. I had 17 doses in my two weeks: still slightly over the average of 16. I'll get scanned in about 6 weeks to see how I'm doing and so I know whether to go on with two more sessions of IL-2 or to go on to something else.

Not enough pressure!

They couldn't get my blood pressure up so off to home I go! I've got lots of energy but am still weak. I'm guessing I have 5-10 days to be about whole.

Tuesday

My blood pressure dropped and got very so they put in int care. I haven't had a does since 3am which was dose 4. The doctor is in England right now and we're waiting for word from him after he reviews the numbers to see if we should go on or not.

IL-Ow

First dose made me really weak. Blood pressure made them unable to admin dose 2. They took a sample from PICC line thinking there might be bacteria there. If not I'm not sure there is a way to continue. If there is bacteria, I think they change the Picc line or treat me and then try some more. No IL-2 last night or this morning.
Had a huge hot flash after the dose a while later. Thought I'd pass out! It was related to the swelling that was starting a bit I think. Very nasty.

2nd IL-2 run

We checked in at noon after splitting a BBQ sandwich at "The Hat". It was just right! About 5 hours of tests and setup to get started. IL-2 dose 1 went in at 3pm. I dozed a couple times while they did things to me. X-ray, ekg, change my PICC line dressing, start various IVs and pills, a lunch tray & more.
They say that the side effects will be progressive generally although some people have less reaction the 2nd time around but that's more rare. Usually they get the same side effects so I can expect weakness, nausea (they are giving me more for that this time), bloating, lack of endurance.
A couple people thought it was pretty funny how I emailed the doctor to get out a week from Saturday from my bed. The USC Wireless is a bit weak but it works with my netbook.
The avg. doses for the 2nd go round is 7. Cheri is betting 11 while I bet 9. If we come back in a couple months due to it working for the 2nd phase, it will be in a newer bigger building that they are moving to in 2 weeks.
We both have our gadgets going and ready for the long haul. And lots of dozing. I mostly use the mp3 player for entertainment although the tv was on a bunch last time also.

IL-2 part 2

I'm still weak but they want me to come and do the 2nd week anyway. I'm guessing that I'll just last for 3 days of doses (6-8) and be out a couple days later with 1-2 weeks to recover. Recovery might take longer since I'm starting out weak. I wanted to work a 1/2 day or 2 this week but I wasn't able to during the week but I woke up way early this morning and toughed out 4 hours. Lots of mail and a couple courier things are on their way with a couple assignments for my attorney friends to do for me. Everything is smooth so far...

4 days out from IL-2 dose

My side effects are getting better day by day but slower than what had been suggested. I've dropped 1/2 of the 20lbs. of water weight. I don't hyperventilate at effort but I am short of breath after doing something like going up stairs. I'm low on energy and weak enough to not want to take a long walk outside. Generally just unsteady. I see the doctor tomorrow about the next phase that should start Sunday. The treatment loses a lot if you don't do it right away but if I'm not recovered it would lose effectiveness too because I could not take many doses of the IL-2. Yesterday (Monday) was the first day that I ate normally. Giovanni's spaghetti for lunch and a slice of pepperoni for dinner.

My sore throat I had in the hospital (which was insignificant) seems to have turned into a decent cough for now. I'm not sure how this might affect things.

I'm not up for doing anything organized so I'm just kicking back to recuperate for today and probably the rest of the week.

Home from first HD IL-2

I kept feeling physically exhausted till I thought I had nothing left. I made the 13th of 14 doses while usually people stop at 9 with the doctor hoping that you'll make 12. I'm so glad to be home although that will fade quickly with the 2nd week needing to happen starting next Sunday. I had other symptoms. When the weakness started fading I realized that retaining water (20 lbs!) was lingering on. My legs felt very weak. The water made me feel like I had just had the biggest meal of my life but it lingers on for some days. I had not really thought about the water, thinking it would go away and then I would work on the weakness. The doctors (a few saw me at the hospital with Dr. Quinn in charge but with another doctor bringing in residents and fellows in the morning).

When I went home on Saturday, 2/13, I felt good but weak when I got home. I took a very shallow bath (I had the PICC IV line still in my arm for next time and can't submerge it). When I dried off and dressed I sat in the recliner and fell asleep for a couple hours. I woke up feeling huge still. Julia came by to pick up her kids and she, Cheri and I chatted for a couple hours. When she and her kids left I was weak and bloated still/again and went to sleep. I woke up at 1am and my legs felt thinner. At 3am I woke up again and my legs seems to feel much more normal although my torso and arms were still bloated. I'm thinking that will fade today and tonight which is Valentine's day. I still don't have much appetite, these past few days, due to the "full" feeling. Writing this would not have seemed possible yesterday but today, 2/14, I'm feeling weak still, if I move around much, but I think I'll be able to read and type in the morning as is my usual routine. My face and legs perhaps had the swelling first and have faded to normalcy first while my torso and arms got the water retention last and will take a day or "three" longer.

When I swelled, that area turned red like a sun burn. When it fades some skin peeled like a mild sunburn. I would describe all of this as discomfort rather than pain. It was strong enough to make me think that a 14th dose would break me or worse but it was all weakness and discomfort. My blood pressure sunk that day (to about 80 over 45 if I recollect correctly), even more than the IL-2 had pushed me before (to about 95 over 50) so the doctors agreed that I should stop or I might end up in critical care. They had put me right across from the nurse's station for critical care so that nursing help was always close. The nursing staff was pretty amazing and helpful at all times.


Julia, Debbie and Dane were big helps during the day while Cheri spent every night in the recliner there. They all did whatever was needed and were very generous. So many people have offered to help...it's amazing. Nancy and Kristi stayed at our house with the kids for all the time that Cheri was helping me. It seems that generosity, kindness and the resilience of other patients are normal in family and friends. It is very heartening. While the medication has pointed out physical limits to me, people helping are beyond what I would have hoped or expected.

I have no idea how someone in worse shape than me could survive this. I'm guessing that I was the only IL-2 patient there but how people cope is beyond me. Sleeping is interrupted constantly. There are boring times in the day but there are so many things going on that sleep tends not to last beyond an hour. They have to take vital signs (blood pressure, pulse and oxygenization) every 2 hours. They weigh you. They take blood. They clean the room. They give you pills or injections into your IV feed. They question you. There are other things that I am no recalling and so sleep is so deprived. Then there is using the bathroom. You are weak and wearing a gown that you can't take off without having to re-snap in the heart monitor wires to your chest sensors or re-snap the somewhat complicated gown snaps that allow you to get past your IV tubes. You have to drag your mobile IV unit to the restroom after unplugging it from wall plugs about at the height of my shoulders. I had to measure the liquid that went into a couple plastic appliances that they supplied (which I could choose from). So you are weak, holding up a folded gown and needing a couple more arms. Nurse will help if you ask but that is hard for me to request. It is so tedious but necessary. And very tiring.

Tuesday 11:30

I got Dose 6 at 7am this morning. I got some nausea yesterday once and this morning. I'm flush (red face and arms and a bit warm). My endurance is shot: I just sat up to get this netbook and was breathing hard and fast. No more walking the halls here! These effects should all leave in the days follow the IL-2 stopping. My last dose is Thursday at 11pm.

I have no pain but I'm too shot to leave the bed except for the bathroom and barely for that. It's hard to get comfortable probably just from being in the bed too long. Cheri and Julia have been great about watching and helping me. Tomorrow Debbie (my niece) watches me for the work day and Thursday, the last and possibly worst day, Dane and Rose are coming during the work day. I probably go home Saturday morning. I hope I get my endurance back for Valentine's day for a nice dinner!

I'm also retaining a bunch of water. It hasn't puffed out anything but my face somewhat. They just gave me something to make me shed the water.

Mon 8 am

They just finished dose 3 of IL-2. My blood pressure is down a bit so they're adding dopamine. I feel flushed and a bit light headed.

Sun 7pm

Dinner was alright. A roll of beef with gravy, some decent potatoes and weak vegetables and chicken noodle soup. The fresh brewed iced tea and vanilla ice cream helped. Also a nice dinner roll.

Almost 4 hours and no side effects. They give you some preventative stuff an hour before in the drip to avoid flu symptoms and nausea.

The chemo nurse had a handmade board that had a lot of the information about the whole experience. Dose 1-4 (up to 11pm tomorrow) has you happy. Dose 6-7 has you having discomfort. Dose 8-9 has you confused and it's a bit harder after for dose 10-14 (if you can handle that) till you leave and you're hopeful.

Food

The food looks better! One meal is Filet Mignon and another is Cornish Game hen. Waldorf Salad, hot fudge sunday. salman, cheesecake, cold beef plate.

The first meal was roast chicken, mashed potatoes, fruit cup and small salad. I'm pretty full after that.

All of it was pretty decent. They even follow the Hobbit tradition of a "Second breakfast" with the first one a continental breakfast while the next one is a snack with 1-4 snacks from diff. categories. I picked a dinner salad and ice cream for my snack.

HD IL-2

Checked in 3 hours ago. Nurses and doctors have been in and out for tests, forms and information. Haven't had time to get bored... Got an IV drip with some medications to minimize side effects and the IL-2 could come by any time now. Cheri is patiently waiting and reading a book.

Getting ready

We saw the oncologist about the test results and they were fine so they added an appointment for the same day to put a PICC line which is an IV with a line in the vein that goes near the heart. IVs are only supposed to stay in for 3 days but the PICC line can say much longer and lets them get the medicine in and take blood out without sticking me with new needles all the time. It took about 90 minutes and was just uncomfortable and not really painful.

I go in Sunday, 2/7/10, at noon and my first dose of IL-2 will be 3pm. From there it's 11pm, 7am & 3pm every day (if I can stand it).

I've got 3 of my best friends/relatives lined up to take some of the heat off Cheri for watching over me during work hours. Right now Cheri just wants Monday and Tuesday off to make 2 court appearances and our friend/neighbor Julia is going to take her place for that time.

Insurance - finally

I got an email at 3am a couple days ago with "finalized" claims from BlueShield. It was all the claims in suspension "pending elgibility investigation". Now I just have to audit whether they got the deductible right since the one CAT scan that they've re-done 4 times is still wrong. I think they just carried over the previous wrong one, that got suspended before the fixed it, to be the same after the unsuspended me. Sheesh.

Insurance

BlueShield had been "Suspending processing due to eligibility investigation". All my explanation of benefits had zeroes in all the columns, except what was being claimed, with a footnote to the suspended processing note. I got this 3am email with tons of claims re-examined more properly. Now I just have to audit what they have me co-paying because I know that at least one was wrong by a couple thousand and wasn't fixed when they took the suspension off.

They give no explanation for what was being investigated and refused to let me talk to anyone that knew anything about it. The claims help line said that the department cannot be called by a client. No info. on the form and no info. by phone: very nice. Well it's fixed now...

tests

Cheri and I went to USC for all the pre-therapy tests. Blood, brain mri, lung test and a CAT scan of my abdomen. It took all day (till about 2pm and then getting home before 4pm). Running around and getting blood drawn, an IV put in, drinking the icky "contrast" barium for the CAT and getting the contrast injected in the IV for both tests wasn't rough but it's a long day...

Appointment

We saw the oncologist and set up tests for 1/26/2010 that are needed prior to starting the high dose IL-2 therapy. A brain MRI, torso CAT and PFT lung test. We see the doctor again on 2/3 when he will give us the test results and probably schedule me for the first week hospital stay to start 2/7.

Staples

I got my staples out Wednesday. Ow. Some nice pinching but no worse that a teeth cleaning with that pin they use to measure your pockets. Youtube actually has video of surgical staple removals and even a kidney removal. Ick. I see the Oncologist on 1/20 to set up some tests before the HD IL-2 therapy. I walked over 2 miles today so mobility is pretty good even if I still can't lean on my right side or move my torso much (bending is baaaad).

I'm doing a lot better. I can take long walks. I don't need vicodin any longer. I went to work for a bit. Today I go to get the staples out. Recovery couldn't go much better from such a big surgery. I'm still eating as much as I can since I lost a few pounds since coming back. Healing must burn a lot of calories because I've ingested a good amount.