The Last Chemo "Treatment" is Over! The Brain is Still Clear! And Other Stuff!

I had my last Taxol chemo treatment today so that means fewer hours in the chemo chair, fewer side effects and fewer drugs to treat the side effects from now on.  And if that isn’t enough good news, the MRI on the brain showed no changes – in other words things are still clear and the cancer is being held at bay in the brain.

What’s next you ask?  I have next week off and don’t have to see a doctor – a very nice Christmas gift indeed. 

The following Monday, December 29, I will have another CAT scan on my lungs.  I am really hoping that we see continued shrinkage and reduction in the lesions with this scan.  At a minimum,  stability from the prior scan that was so good.

Also, I will have my first “maintenance” chemo on the 29th which consists of just one IV drug – Avastin, an angiogenesis inhibitor that slows the growth of new blood vessels that feed cancer cells, essentially starving the cancer cells. It has shown good success in the past with other patients who have followed this treatment and maintenance combo.   I will have the IV every 3 weeks initially and if all goes well, stretch it out to every four weeks after a few cycles.  The only real side effect I've had from Avastin is bloody noses.  I've become a professional bloody nose wrangler (a rare profession indeed!) so I'm not too concerned with that.  I don’t need any pre-chemo drugs or post-chemo drugs to alleviate side effects so the infusion is only the 30-minute drip itself.  I’ll continue on this program as long as it produces stability in the lungs.  Hopefully, a very long time!

My headaches continue, though more subdued and tolerable.  I was headache-free for almost 2 weeks but started to have more run-of-the-mill headaches starting at the end of last week that just sort of linger.  I try to ignore them for the most part and occasionally take Advil when it gets too annoying.

My hair has been surprisingly resilient.  I still have coverage over the entire cranium, but it is extremely sparse and unless combed over painstakingly, reveals patches of scalp.  It isn't a flattering look.  I've begun to wear my wig and hats when out in public.  This Sunday, Doug will shave my head completely and on Monday, I will have a henna crown applied to my bald head.  This is a temporary tattoo in the Indian ceremonial tradition that features ornate designs of all kinds.  It is more typically applied to hands and feet, especially for wedding ceremonies.  I am excited to actually feel good about being bald and to actually accentuate it in such an artful way.  I only wish it would last more than 7-10 days.

 

I’m not sure what to expect from the side effects of today’s chemo.  Although it was only the Taxol, that’s the nastier one for side effects and it seems that I have been having stronger effects as the chemo drugs have accumulated in my body.  Well, at least Christmas week should be side-effect free!

 

Speaking of the holidays, I wish all of you a happy and healthy holiday season with lots of love and laughter and a kinder 2015 for all of us.

 

Winding Down

Today was the last of the chemo treatments with all 3 drugs.  Everything went smoothly.  No other real news since I didn’t have any scans today.

 On Monday, Dec. 15 I will have the last chemo with just the Taxol that is part of this treatment.  I will also have an MRI.

I’m feeling good and back to normal right now, but fear that soon I’ll be feeling the effects of today’s chemo.  We’re on the final stretch.  Just have to bear down a little longer.

That’s the latest!

Headaches and Other Fun Side Effects

I had an appointment with Dr. Caplan, my primary physician, yesterday evening to try to figure out the cause of my headaches, which I have been having regularly for the past few weeks in varying degrees of severity. 

 

She didn’t feel any pressure in the sinuses and thinks the headaches are in the migraine family.  There is a chance that I have had some kind of virus, maybe even some form of shingles, that triggered both the hearing loss and these headaches and that it might ultimately go away.  There is also a chance I will be dealing with migraines from now on.  I guess we wait and see.

 In the meantime, she recommended using Excedrin Migraine.  If that doesn’t work, we will try Imetrix.  And if that doesn’t work, we would move on to the hard stuff that has a barbiturate in it.

In the midst of all this, I am now developing mouth sores and my face has broken out in an angry rash.  Boy will I be glad when I’m done with this chemo treatment!

Happy Thanksgiving!

On this Thanksgiving Day, I am grateful to still be among all of you, my wonderful friends, family and supporters.

It has been four years, three months, and 7 days.

A Positive Shift in Momentum

Well, things finally seem to be settling down and starting to work back in my favor. 

Today's CAT scan of the lungs showed a reduction in both number and size of the lesions.  Hallelujah!  The new chemo treatment is working. 

Additionally, the blood panel showed everything in a normal range as well as a reduction in the tumor marker rating.

I haven't had a headache in the better part of a week.  I can hear fairly well in my right ear again.  My energy has been good. 

Now, let's hope this momentum continues to build!  :)

The Roller Coaster Ride Continues

I awoke at 4 this morning with a severe headache that wouldn’t go away.  After two hours without relief, I called Dr. Bonomi, who told me to go to Rush again today for another MRI, which turned out to be clear.  Good news.

But they still don’t seem to know why I’ve been getting headaches every morning for the past 10-12 days. They typically subside by the afternoon.  They’ve been increasing in severity with each passing day. Dr. Bonomi has me switching the steroid I am taking from prednisone to dexamethasone in hopes that that will give me relief.  I guess we wait and see.

So the roller-coaster ride continues.

Good News on the Hearing Front

I had my check-up today with the audiologist, Dr. Keri Kwarta and the ear, nose and throat doctor, Dr. Caldarelli.  My hearing has improved significantly.  The doctors say it is seldom that they see such drastic improvement occur so quickly.  The audiologist said she had maybe 5 cases of recovery like mine in her work experience. 

 Although not perfect, my word recognition performance increased from 20% to 92% in the right ear (it was at 100% in left ear both times).  Although the test on recognizing tones was still below normal for the right ear on about 3 or 4 frequencies out of 10 tested, it is still much improved over the last test across all frequencies.  (The left ear is fine on all frequencies.)

Nobody could say whether I might have even further improvement or not.  I still have tinnitus constantly in the right ear.  I will continue stepping down on the prednisone dose and should be done with it entirely after November 11.

In other health-related news, I continue to get some bloody noses and daily headaches (ENT doctor thinks headaches are triggered by cervical issue based on my description of  location of pain, but he didn’t even look at it.)

I am really excited about the improvement in my hearing.  But as usual, am not satisfied and want further improvement.  I guess I'm a perfectionist.

The Sound of Sound

Good news on the hearing front - I am happy to report that hearing is coming back to my right ear.  It still has the hissing of tinnitus most of the time and the clarity and volume of content the ear processes vary throughout the day, but I definitely have at least partial hearing in that ear.  I am about midway through my steroid treatment for this problem so I am hoping I will continue to see more progress.

I see the Ear, Nose and Throat doctor on Thursday morning and will have a follow up audiology test to see my progress.  I'll post results by Friday.

Today I had chemo for just one drug, Taxol.  Everything went smoothly. Including all the pre-medications to counteract the effects of the chemo drug, a total of about an hour and a half in the chair.

The hair is still hanging in there.  Still just losing it in little wisps when I shampoo, towel dry, blow dry or brush my hair.  I'm wondering if the steroids I'm taking for the ear issue might be slowing down the hair loss.  Whatever the reason for it, I'll take the extra weeks of having hair! :) 

Next week is my off-week - yippee!

The following Monday, November 17 will be the beginning of the third cycle (there are four all together) and will include the full chemo with all 3 drugs as well as a CAT scan for the lungs and an appointment with Dr. Bonomi.

Whaaaaatt??!!!

This cancer roller coaster continues its gyrations.  The past week has been a doozy!
 
A week ago today (October 20), I woke up with ringing in my right ear only.  Although tinnitus (the official name of this syndrome) is not unusual for me occasionally, it's usually in both ears at once and it only lasts a few minutes or hours.  In this case, my one ear has been ringing continually for over a week.  Furthermore, on Thursday morning (October 23) I lost hearing in that ear entirely.
 
EXECUTIVE VERSION:
 
The hearing loss is not related to the cancer in the brain.  The MRI of the brain showed everything, including the little lesion they had seen in the prior MRI scan, to be completely clear.  The hearing loss is probably due to a random virus that got into the middle ear and hearing may or may not be restored with some serious steroids over the next 2 weeks.  There is about a 50% chance of permanent hearing loss. 

Although my hair is thinning and I continue to lose small amounts at a time, it is not coming out in clumps so I don't need to shave my head just yet. 
 
LONG VERSION:
 
When I lost my hearing entirely on Thursday, I spoke with my GP, Dr. Caplan and she saw me that afternoon.  Based on the symptoms I presented, she didn't think it was brain related but still was anxious to see the MRI results.  Her best guess was an infection in the Eustachian tubes in the inner ear.  She started me on some low-grade steroids.  I was optimistic this would solve the problem but started to have my doubts and concerns after three days passed and there still was no improvement.
 
The good news – and it is REALLY good news – is today's MRI revealed that the hearing loss is completely unrelated to the brain and the cancer and showed the brain to be perfectly clear of any lesions, old or new. 
 
Doug and I were so relieved to get a clear MRI.  After my brain lining (meningeal) inflammation back in July and learning about the new little lesion in the brain at the last MRI, we were frightened about where this hearing loss problem might lead us in terms of treatment options and their impact on quality of life.
 
While I was at Rush today for my MRI, I saw Dr. Caldarelli, an ear, nose and throat doctor, to look at my ears and have an audio test.  He suspects a virus in the middle ear.  They aren't exactly sure how I got this virus - it could be my weakened immune system made me susceptible to something which I wouldn't otherwise have been.  It may just be random (My recently-blind dog Cassidy and I are competing in collecting sensory impairments with no known cause.)  There is a 50% chance the hearing will come back with heavy duty steroids (yup, back on the prednisone) over the next two weeks.  I will get a more complete report tomorrow.

More good news – so far my hair is very gently leaving me.  It is thinning, but still presentable.  Instead of big clumps of hair coming out with a brush or a shower drain piled high with hair, there are just little delicate wisps that collect in my sink, tub and brush.  Much more manageable.  There is some discrepancy on whether I will lose it all or not – or if I don’t lose it all, just how much scalp will show through.  If a lot of scalp, then I’ll shave the rest off anyway.  In the meantime, I am enjoying having hair each additional day I get.

 

So I am riding high that I had a clean brain scan, but I am feeling a bit low about the prospect of losing my hearing.   Losing my hair is kind of the flat track on the coaster that's in between the upward climbs and downward dives.  I'm not too worried about it one way or another.

 

I hope you have enjoyed this story of my abusement park ride with cancer.

 

WHAT'S AHEAD

 

If I receive any interesting news in my call with Dr. Caldarelli tomorrow, I'll post it.

 

Next Monday, November 3 will be an Avastin-chemo-only appointment, so a shorter day at the hospital.  I may not even bother to send an update unless I learn some new information. The following week is my off week.  A CAT scan and big chemo treatment will occur on November 17. 

 

Stay tuned!

A Step in the Right Direction

Today I had my first chemo with the new treatment at the Rush Oak Park hospital.  I am pleased and relieved to say that everything went smoothly.  Although the infusion nurse had some trouble finding my wobbly vein, she did get it in and nobody talked to me about putting in a port today (whew!)

There were a few points along the way during the chemo infusion where a patient may experience that a drug might causes a reaction in the body - hives, nausea, fainting, shortness of breath are some examples - and the dosage or drug would need adjustment before proceeding. Fortunately in my case, I got through all three drugs without any problems.

The next test is seeing what and how severe the short-term side effects from today's treatments are.  I probably won't have any noticeable side effects until Sunday and they might be strongest Sunday through Tuesday or Wednesday next week.

My next chemo will be just the Taxol chemo drug and that will be on Monday, October 13. 

DL and the Terrible, Horrible, No Good, Very Bad Week

Actually, it has been longer than a week that has been pretty lousy but it's close enough.  Read on at your own risk of being bummed out.

Our Dogs Are Illin"

Sundance - On September 15, we received confirmation from a biopsy of Sundance's nose that she has Discoid Lupus Erythematosis (DLE for short), which is different from the human form of Lupus in that it usually stays localized around the snout for a dog.  If left untreated, ulcerations develop around the nose, mouth and snout.  Treatment will be either a topical ointment, oral drug or a combination.  Before we know what treatment we will use for her, she needs to heal from a severe bacterial infection in that spot (also on her butt) so we are currently treating her with topical and oral antibiotics for that.   Like her Addison's disease, the DLE is an auto-immune disease that must be treated the rest of her life.  The good news is she can still have a normal, good quality of life in spite of this and it doesn't shorten her life span.

Cassidy - On September 25, we let Cassidy out in the backyard to go to the bathroom.  She took off from the house like a bat out of hell as usual, but then ran full speed into the side of the bushes.  A few hours later, we let her outside again and she ran into a cement planter.  The next day, I took her to the vet and he confirmed that she had suddenly gone blind.  Today (Oct. 1) I took her to a veterinary ophthalmologist who diagnosed her with SARDS - Sudden Acquired Retinal Degeneration - which can come out of nowhere and cause permanent blindness overnight.  She seems to be adapting well, but we are all in a state of shock.

I've Had Better Times

This past Monday, September 29, I had my usual CAT scan on the lungs, blood work and visit with Dr. Bonomi.  What wasn't usual was the results of the scan.  The cancer lesions in the lungs have increased in both size and number.  Not in a fast, aggressive manner, but enough for Dr. B to strongly recommend a different course of chemo treatment.  So, starting this Friday and for 12 weeks broken out into 4 three-week cycles, I will be having a combination of three different chemo drugs - Taxol, Carboplatin and Avastin - infused into my body.  Chemo treatments will be one day per week for two weeks in a row and then the following week off.  That three-week cycle (two on, one off) repeats four times.  After the first two cycles (equal to six weeks), I will have another CAT scan to see how the lungs are doing.  If things look good, we continue with the last two cycles of this treatment.  If things don't look good, we look at some other treatment but at this time it isn't clear what that would be.

I'll be taking enough preventative drugs to keep nausea at bay and have only slight fatigue, but I will likely lose my hair again and there is a chance of neuropathy that causes numbness in the fingers and toes on a short-term or long-term basis.  Dr. Bonomi believes with the approach he uses for this chemo treatment, the chances of neuropathy are reduced.

So that is my story at the present time.  I sincerely hope it gets better in future postings.  I wish I could post a more cheerful message, but it hasn't been easy to deal with all these issues especially when they are happening one right after the next.

A Great 2014 Lung Run

Team DL Brunch at Ann Sathers

We walk to fund research,

We run for our friend,

As Team DL we gather,

So lung cancer will end!

- written by Susan Meismer, multi-year Team DL participant
 

This past Saturday, September 13th, was the 10th annual Chicago Lung Run.  It was also the 5th year that Team DL has participated.

Although team members come and go throughout the years as they have other commitments and activities, some are there every year.  In either case, the support is felt from all of them every year.  And the donations are always generous and numerous.  A big THANK YOU to all of you who have given your time, your money and your support to this wonderful cause over the past five years. 

And just what is that cause?  The money goes to Uniting Against Lung Cancer. UALC is dedicated to funding innovative research and raising awareness to find a cure for lung cancer.


Hopefully, we can continue this tradition for years to come or until they discover a cure, whichever comes first.  And we can also continue having a brunch at Ann Sathers afterward!  :)

Better News Today

I received informal MRI results from my oncologist over the phone this morning.  The very good news is that there is no sign of ANY cancer in the meningeal lining of the brain - this is where I had the swelling that sent me to the hospital in July.  Dr. Bonomi is very happy about this development.  It is clear the Tarceva is working.  Yay! 

There is a little gray cloud in this otherwise blue sky report.  There is a new tiny lesion (we're talking millimeters) in the right occipital lobe that we need to keep an eye on (pun intended - the occipital lobe governs eyesight).

The doctor is not at all worried about it and says if it grows we can just zap it with focused radiation. I'm not feeling quite as cavalier about it, but I can't do much about it so will do my best not to let it worry me.  I suggest we all take that path.

I should have the radiologist's formal report on the MRI by tomorrow but will only post something if there are any more details that are worth sharing.

A Frustrating and Sad Day

I don't have any news on my progress from the MRI today because my first appointment of the day was over an hour late and caused me to miss my scheduled MRI appointment that followed it. The radiology dept. could not fit me in until 5 pm so I didn't leave the hospital until after 6:00 p.m. after being there since 9:45 a.m. and not eating or drinking anything because of the MRI. Today was even more waiting around than usual with a lot of uncertainty of when and if all the procedures originally scheduled for today would get done. They ultimately were, but I won't get the results of the MRI until tomorrow or Wed.

While waiting, I received the tragically sad news that Doug's 24 year old cousin who had just recently completed her treatment for lymphoma died from related complications today.

When I worked on sending out messages this evening, I began to have computer issues as well.

It has been a very hard day.

Things Appear to be Stable

I had a visit with Dr. Bonomi, CAT scan and maintenance chemotherapy on Monday, August 18.  Everything seems to be going along just fine.  The CAT scan was not significantly different from the prior one.  Some lesions may have shrunk a little, some lymph nodes may have grown a little, but nothing the doctors are giving much attention or concern to.  The blood work looked good and even my red and white blood cell counts were in normal range.

Dr. Bonomi is very comfortable with my progress and glad to see I am back to my old self in activity, awareness and cognition.  I'm not having any pain or discomfort.  We will continue following the current treatment of high dose Tarceva once a week for the brain and maintenance chemo once every 3 weeks for the lung.
I continue to reduce the steroid dosage and if all goes well, will be off them entirely after this Friday. 


The next appointment is September 8.  I will have an MRI with contrast to see how the brain is doing - hopefully the Tarceva is doing its job once again!  All outward appearances seem to indicate that it is.   I'll take it!  :)

Last Week was a Roller Coaster

On Sunday afternoon, Doug whisked me off to Rush Medical Center Emergency Room where I spent the next 4 days with swelling in the lining of the brain.  I had a ocular migraine earlier that morning that went away without event.  I went to visit my parents and all was fine, but when I got home I was very tired and took a nap.  When I woke up, I was out of it.  Blank stare.  Trouble forming words.  Slow movement.  Doug thought I was having a stroke.  He called our oncology nurse, Irene, who said to take me to the ER at Rush.

I have never had such intense pain.  It hurt to blink my eyes, move my neck or any other part of my body.  I hurt from my forehead to my ears to the base of my spine.  I had no sensation in my left arm.  I just tried to lay perfectly still and bring my mind somewhere else.  My emotions were unstable and I wasn't myself.

I resisted an MRI with contrast because I felt panicked when I had one without contrast.  I also refused a epideral puncture to determine if the cause of the brain swelling was infection.  I ultimately had the contrast MRI and based on that and the fact that the steroids they gave me worked so quickly, they determined the cause of the swelling was cancer.

I am now on a high dose of Tarceva (700 mcg) once a week to keep the brain swelling down.  I also am continuing with maintenance chemo once every 3 weeks for the lungs.  I am slowly weaning off the steroids.

I feel back to normal, but it was a scary episode.  I hope to avoid any recurrences and just get on with living a normal life.

My Post on The Plum blog

My second submission to The Plum, an online magazine for the Women Survivors Alliance has been published on their site.  You can view the posting, The One Thing We Can Control,  by clicking on this link.  The gist of it is that no matter what life throws your way, you can choose how to deal with it to make the situation better or worse.

I hope you find it helpful.

Stability

Today I had a CT scan and my first maintenance chemo.  The CT showed no significant change from the prior one, which is considered to be a good result.

Maintenance chemo was basically the same as the treatment chemo, but a half an hour shorter since one of the chemo drugs is now eliminated. I also have fewer oral drugs to take post chemotherapy.

Next chemo session, along with an MRI of the brain, will be Monday, July 21.