"Cash"

We've returned to the Hope Lodge for another week of Belinostat.  Since John received his port, treatments continue to be uneventful and there are limited side effects.  He has difficulty getting to sleep, due to the steroid he receives as part of the pre-meds administered prior to the chemo.  The other side effect, which is indigestion, usually begins on day 3 of treatment, but is easily managed by over-the -counter remedies, such as Tums.

He was re-scanned last week to check the progress and the CT indicates stability in the lung spots....there's been no shrinkage, but, there's also been NO growth.  So the plan is to continue the current schedule of treatment for another 2 months, at which time he'll have another CT scan, as well as a new PETscan.

You may have noticed the name of this installation of my blog.....Cash.  It is in honor of a visitor we had today in the infusion center......a beautiful, 3-year-old Golden Retriever who is a member of the therapy dog program (along with his person, of course).  What a wonderful program this is and what a valuable service they provide.  When these dogs arrive to visit & cuddle up, the change in the mood of the patients is visible....at least for a little while, their focus is not on the treatment, but on these wonderful dogs.

In addition to being a therapy dog, Cash's person told us that he is also a champion in agility competition & obedience.  And, by the way, he gets his name from Johnny Cash, his person's favorite singer!!!

Many thanks to Cash, the other dogs, and their people.....you definitely help to lighten the mood in what is often a daunting situation.

Belinostat week #4

Week #4 of the Belinostat clinical trial draws to a close tomorrow.  We began the week on Monday by seeing the Doc who is heading up the study at UH.  When asked how we would know whether this treatment is successful, his answer was:  there are 3 possible outcomes...the cancer shrinks; the cancer is stable with no growth; the cancer grows.  Either of the 1st two outcomes are considered to be successful....as of John's last scan he is stable.  Week #4 will be followed up by another round of scans during the week of July 3.

It's been a good week, all in all.  Having the port has truly eliminated a lot of stress for both of us on infusion day and has reduced the time we are there, leaving us some time to do something enjoyable for a change.  The weather in Cleveland this week has been, shall we say, a bit on the warm side....in the 90's....so we've tried to limit the outdoor activities.  We have enjoyed some shopping and this evening decided to treat ourselves to a nice dinner out.  We chose Sergio's, a mediterranean restaurant just a few blocks away on the Case Western Reserve campus.....one we've been wanting to try for a while.  It was a beautiful evening, the temps finally cooled a bit, so we enjoyed our dinner of Salmon (for me) and Scallops (for him) outside in their garden dining area.  It was just so relaxing taking in the flowers, butterflies, birds in this beautiful setting and enjoying each other's company away from the "cancer world" for an evening.

Tomorrow is his last treatment for this week and he's chosen to go it alone, leaving me back at the Lodge to get the room cleaned up, clothes packed, etc. as he wants to try to get out of here earlier than we usually manage.  I've never let him go to a treatment alone, and it makes me a bit nervous.  But he assures me all will be fine.  Of course it's only a 5 minute walk through the parking lot, across the street, and into the door of the infusion center.  Really....how much trouble can he get himself into?  We shall see!!!

Getting a Med-Port

As I write this, John has just been taken into surgery to have a port placed in his chest for use in future infusions.  The decision to do this was made yesterday after he had some major issues during infustion and could not finish the last 20 - 25 minutes.  He's just had so many "pokes" by now between blood draws, infusions, scans, etc. and they're having a very difficult time getting a good vein to use.  Yesterday the infusion leaked into the tissue in his left arm, causing severe pain (on a scale of 1 - 10, he said it was an 11).  After two injections of Dilaudid, the pain finally subsided and was bearable.  Of course, after that, he was too wobbly on his feet to walk back to Hope Lodge, so they called Security to transport us back.

The great thing about the port is that it can be used for not only the chemo infusions, but also blood draws & the contrast used in the various scans he gets.  Hopefully, his days of being "poked" are over.  And, as soon as he recovers from the procedure, we can go right to Infusion and have today's treatment....the port can be used immediately.

Here's looking forward to less stressful infusion days.

Thank God for good news

Finally, some good news.  John's scans from last week indicate no evidence of cancer at the primary site in his right cheek.  The miniscule spots on his lungs remain just that.....miniscule.  They are no smaller, but, more importantly, there is NO growth.  With these results, he continues in the Belinostat clinical trial.

As I previously wrote, he was experiencing some pain & burning sensation at the infusion site during the last few minutes of infusion.  That seems to have been remedied by running a saline drip concurrently with the infusion.  He had his 1st treatment today in round #3 and all went well.  Due to the Memorial Day holiday, there was no treatment on Monday, so we will be here until Saturday this week, in order to get in all 5 infusions. Then it's back home for two weeks before returning for Round #4, after which he will, again, be re-scanned and they will assess whether he continues with the trial. 

I just pray he continues to respond well and makes more progress toward controlling this "C" monster.

Week #2 of Belinostat - winding down

As we near the end of week #2, all is well.  They did slow the infusion rate from 30 minutes to 1 hour, which reduced the pain & burning sensation at the IV site.  It did not, however, totally eliminate it.  We found out today that it seems to be common among the participants of this study to experience these effects.  I wonder if, perhaps, they might need to give each of them a port to eliminite these complications. 

Other than that, John continues to tolerate the drug very well.  The only other minor effect is some heartburn, but Zantac takes care of that.  He takes it at the first sign of discomfort and it is stopped almost immediately.

So, he has his last treatment of the week tomorrow, after which we'll pack up and head back home.  He'll be scanned on the 21st to see how he's progressing.  If there is improvement, or even status quo, he will continue in the trial, which means continuing the schedule of  one week treatment followed by two weeks off and repeated as such over and over.  However, should he have some growth in the cancer, they will re-evaluate and probably pull him from the study and start him on some other chemo treatment.  My prayer is that Belinostat is working for him and reducing the cancer.

BELINOSTAT....Week #2

We arrived safely back at Hope Lodge yesterday with the anticipation of John beginning week #2 of the clinical trial.  As with all clinical trials, there is a lot of monitoring of various vitals & info.  To that end, our day began with lab work, followed by a visit with the Doc in charge of the trial, then an EKG, and finally the pre-meds (anti-nausea, etc.) & actual infusion, resulting in 5+ hours being spent in the hospital today.  Needless to say, we're both tired. 

John's bloodwork indicates normal levels are being maintained and the EKG was normal, so they proceeded with the infusion.  All went well until he was finished with the infusion and they had removed the IV....at which time he started experiencing pain & a burning sensation originating at the IV site and travelling up his arm.  After a few minutes of applying a hot pack, the pain & burning had subsided.  By then, however, he was feeling a little light-headed, so they re-checked his blood pressure which was REALLY low at 92/48.  Although the Doc suggested some IV fluids, John didn't really want to do another IV, so they had him remain where he was & rest, re-checking the BP every 15 minutes or so.  It took about 45 minutes, but the BP did return to normal ranges.

Don't know exactly what caused all this, but tomorrow the plan is to slow down the infusion rate and see if that helps.  It is normally prescribed to be infused over a period of 30 minutes, so they'll slow it to 1 hour and see if that changes anything.  Obviously, that whole incident caused some anxiety, so he's a bit tired this evening......but all in all doing well and eating well.

He is now hanging out here in the livingroom @ the Lodge watching Dancing with the Stars with 3 ladies.....LOL!!!  Those of you who really know John will realize how weird THAT is.....not that he's hanging out the with ladies (he's always done that), but that he is actually watching that show!!!!!

Clinical Trial Day 3 & all is well

Treatment # 3 is now in the history books and all seems well.  They were able to find a larger vein yesterday (& today), so no problems with pain in the vein following treatment.  The anti-nausea meds continue to work, as he's experienced no adverse side effects.

Tonight is "potluck" night here at the Lodge.  They are providing roast turkey and all the residents chip in and provide the side dishes.  So I'm off to the store for some supplies to whip something up.

Our love & appreciation go out to you all.  We so appreciate your kind thoughts and prayers.  Will keep you updated as we move along through this trial.

Back "home" again at Hope Lodge

We checked into Hope Lodge yesterday in the late afternoon after attending an event for Head & Neck cancer survivors at the American Cancer Society, Cleveland.  It involved a wonderful afternoon of food tastings, raffles, talks by oncologists from three of the Cleveland hospitals (UH, Cleveland Clinic, & Metro)...John's ENT oncologist, Dr. Zender, being one of them.  There had to be well over 100 people there....it was amazing to realize they all had a cancer similar to John.

After getting settled into our room, we were both tired and I thought I'd probably just pass out and sleep 'til the A.M.....NOT!!!  Maybe it was just the 1st night in a strange bed, or anxiety about beginning the new treatment....but I hope I sleep better tonight.

So, his 1st treatment was at Noon today and was well tolerated.  The only problem was the vein they were able to find for the infusion was a small one near his left wrist and by the end of the infusion time, the vein was causing him a substantial amount of pain, but was remedied by the application of a heat-pak for several minutes.  They're going to try to find a larger vein tomorrow, if they're unable to do so, they'll slow the rate of infusion to 60 minutes, as opposed to the 30 minutes it normally takes.  Hopefully, one of these options will be the solution for him.

This afternoon we walked around the corner to a hair salon to see if we could get his hair cut.  He lost all his hair last summer with the chemo and it's been growing back in since last fall.  Although his hair came back in the same color as before, the texture is a bit different....very soft like a baby's hair and "fuzzy".  We even tried my gel on it, but it still would not lay down, so we decided it's time for a cut.

We, along with the other Hope Lodge residents, were treated to a wonderful dinner this evening provided by the Cleveland Area Realtors Ass'n. consisting of chicken (both fried & baked), rice w/gravy, broccoli, and a variety of desserts.  I continue to be amazed by the goodness of people reaching out to make the road for these cancer survivors (and their caregivers) a little less rough.  We are truly blessed.

This afternoon, while enjoying a latte at Starbucks, I picked up a small publication, the Greater University Circle Neighborhood Voice, which had a wonderful article that just spoke to me.  Throughout this "cancer process", I've occasionally had "little breakdowns" when I just become overwhelmed.  The thing is it never seems to be the big things (like John's cancer or my brother's situation) that puts me over the edge....it's always the "piling-on" of the small things.  This article talked about how we manage to "hang in there" through the big things, but it's the burden of everyday duties like bill-paying, grocery shopping, cooking, caring for our homes & yards, and the, seemingly, endless list of duties that are often overwhelming & exhausting.  And all along, I thought it was just me.....turns out I have a lot of company.  Quite a relief, actually.

The 'trial run' of Belinostat

We've just returned home from an overnight at UH......amazing how tiring 30 +/- hours in a hospital can be.  John had a "trial run" with the new clinical trial drug.  This is done so they can monitor him and take regular blood work, to be sure it will be well tolerated. The good news is all went well.....no nausea or adverse side effects and he was able to get a fairly good night's sleep.

The infusion schedule for this drug is a week of treatment (Monday-Friday) followed by 2 weeks off, with blood being drawn every Monday, even during the "off" weeks.  Treatments will begin next Monday (4/16) and we will, once again, become residents of the Hope Lodge during the treatment weeks.

As the infusion time of this drug is relatively short (about 1 hr....including the anti-nausea pre-meds), and John seems to tolerate it well, we're hoping to take advantage of the warmer weather in Cleveland this time of year and take in more of the museums, parks, and a couple Indians games during our time there.  We're going to have a lot of time on our hands....can't spend it just sitting around the lodge.

Clinical Trial

It's been a couple months since my last post, mostly due to there not being much news to share.  John's recovery from the November - December radiation treatments seems to be more or less complete.  His taste buds and saliva production have substantially improved and he has little to no eating and/or swallowing issues. 

He had his post-treatment scans (both PET and CT) in late March and we have received partial results.  They seem to indicate all areas are stable, which, in essence, means no growth.  As long as we can received "no growth" reports, I'll consider it a victory.

So now we move on to more chemo, as John will be participating in the clinical trial for a new drug called Belinostat.  Following is a description of the drug found in my internet research:

    "In pre-clinical trials belinostat has shown to be effective against multiple cancers by inhibiting cell proliferation (inhibiting cancer growth) and inducing programmed cell death (“apoptosis”) in tumour cells (the tumour cells are forced to self-destruct)."                                                                      

Our prayer is this drug will, indeeed, do what it has shown promise of doing.  We'll head to Cleveland tomorrow, where they will do a "trial run" on John, which will involve administering a lower dose of the drug and monitoring him for 24 hours to assure he will be able to tolerate with no difficulties.  Assuming all goes well, he will begin the "full strength" treatments next Monday (4/16).  The schedule is 5 days of treatment, followed by 2 weeks off before the next treatment.  During the week-long treatments we will, again, be residents of the Hope Lodge.

So, that is where we stand.  We continue to appreciate all your thoughts and prayers and are looking forward to good results from this new phase.  I will continue to update as we make our way through this treatment. 
   

TEST RESULTS

Today's visit with the two oncologists resulted in a mixture of feelings for both of us.....a real up and down day.  We first saw the chemo oncologist who told us last week's chest CT indicates the small spots on John's lungs have increased in size....Example:  one of the spots was 3mm in September and is now 5mm.....however, the fact remains all the spots are still very small.  This indicates additional treatments to come in the form of a different chemo.....and possibly a clinical trial.  While this is not devastating news, it wasn't exactly what we thought we were going to hear....or maybe it just wasn't what we wanted to hear.  I don't know about John, but I went into that appointment with a positive attitude and such high hopes, only to be extremely shocked and disappointed.  At any rate, we left  his office feeling like we'd been kicked in the gut.

Our visit with Dr. Yao (radiation) yielded better news and the fact that John is no longer symptomatic indicates the radiation was quite successful.

So, the plan is to return in 2 weeks, giving the Docs time to research all our options (including the clinical trials) and start all over again.  I was just SO hoping he wouldn't have to endure further treatment and we could return to a life where we can confidently make plans and have a reasonable expectation that we won't be forced to change them.  I guess that is not the plan.....yet!!!

Six weeks post-treatment

It's been a long, hard road since John completed his treatments.  We returned home on New Year's weekend with John unable to taste or eat much at all.  For several weeks, he lived on Carnation Instant Breakfast, puddings, soups, etc. and managed to lose at least 10 pounds (not that he needed that).  He also suffered from a complete lack of energy and did not sleep well.

I am happy to report that, within the last 2 weeks, things have started to improve.  As some of his tastebuds and saliva production has returned, we've been able to add fish, chicken, salmon, cottage cheese, applesauce, cheese & crackers to the menu.....and last night he had a hamburger patty!!!  As for the energy, he has a cirle track inside the house (from the foyer, thru the livingroom, diningroom, & kitchen, then back down a hallway to the foyer) that he's been walking everyday and building up some strength.  That is supplemented with outdoor walks, when the weather permits.  The other good news is that the skin infection & radiation burn have both cleared up, so those are no longer causing him any discomfort.  Though there is still a long road ahead, through the Grace of God, he is much improved over 6 weeks ago.

Last friday (2/3) we went to Cleveland for a chest CT scan to check the status of the small spots that were on his lungs.  We see the Doctors tomorrow for the results of that scan and, I assume, will find out when they plan to do the head/neck scan so we'll know just how successful all this treatment has been.  Praying we hear only good news.