Welcome to the Dr.'s Office page of my website.  This page is intended for those of you who may want specific medical information related to my disease and condition. 

Here is where I will post detailed medical updates and specifics concerning symptoms, progess and physical changes I am undergoing throughout the progression of this disease.

Feel free to email me Questions and I will post the Answers here.  Nothing is off limits.  If you are wondering about something then someone else is too. 
Send your Question to: Cynthia at: ultracoppertop@comcast.net

WARNING  If you can’t believe this is happening and need more time to process the way you are feeling, you may want to avoid reading the very frank discussion in The Doctors Office.

The Doctors Office

            This page is where I will talk about the experience I have with the doctors.  There is no treatment for melanoma in this stage, but it may be interesting to some to hear about the things I experience.  I have devoted my life to working as a Diagnostic Medical Sonographer, so the interaction with people in the health care system is interesting to me.  If you prefer not to think about that aspect or it is too raw, intimate or frightening, avoid the Doctors Office.

Friends,

            I have just learned that the melanoma I was diagnosed with almost 3 years ago has come back.  We had hoped that I would be cured after a surgeon removed a tiny suspicious mole  on the right side of my torso August 14, 2004.  I have been checked frequently and had no sign of disease.  In fact, in April I was thoroughly examined by two dermatologists at the University of Washington who found nothing.  A couple of weeks ago, I noticed what I thought was an aching muscle under my shoulder blade on the left.  I attributed it to working out at the gym.  Then I thought there might be a lump below my collar bone on the right side.  It scared me because I remembered that the dermatologist told me that if the melanoma did spread, it would go upward (toward my head) on the same side where the original mole was located.

            Since I work with ultrasound machines, I looked at the lump with ultrasound.  The moment I saw what the lump looked like, I knew the cancer had returned.  It was a 3.8-centimeter lymph node (normal lymph nodes are less than 1 centimeter).  Further investigation revealed other abnormal lymph nodes under my arm.  The fact that these lumps came up so rapidly made me know that the growth is aggressive.

            Since this discovery, I have been to 3 of the best doctors at the University of Washington.  There has been no good news.  Melanoma is very deadly because it gives off little seeds that spread in your bloodstream.  It is unpredictable and hard to control.

What I am trying to say is that I have learned that there is no treatment, chemotherapy, or surgery that can treat my disease.  I am facing the end of my life at age 48.  I am told that I have less than one year, probably 6-8 months. My girls are 19 and 22 years old, and we are struggling to come to grips with this.

            I have gotten busy trying to get my affairs in order, and I am still working (I have a little pain, but so far not bad).  My coworkers at SonoSite do not know the gravity of the situation because I am getting my life insurance and disability arrangements in place. 

Cynthia McCrary

CT Scan Results 7/12/07

Radiology Report For U2580023

Page I of2

University Of Washington Medical Centers

CYNTHIA MCCRARY U25B0023 5237620 12-jul-2007 13:55 CT CHEST W CONT

Requested by: THOMPSON, JOHN A

Diagnosis:
H/O MELANOMA WITH NEW ONSET OF ABDOMINAL DISCOMFORT AND INCREASING S

Clinical History: Melanoma with recent onset of the bone mineral discomfort;
increasing size and bilateral axillary/shoulder tumor

CTB AB-A EXAM: CT Chest and Abdomen with IV and oral contrast Type of scan: Single
phase spiral Superior Extent:
Lung Apex Inferior Extent: Iliac crest IV Contrast: positive Oral Contrast:positive

COMPARISON: May 4, 2007

FINDINGS:

CHEST:

Metastatic disease throughout the thorax and abdomen has progreosea and a rapid rate.
The mass in the right axilla (4/15) has more than doubled in size. It compresses and occludes the subclavian vein, and extensive venous collaterals vessels have developed.
Significantly smaller, new, left axillary have developed. There are new foci of metastatic
disease in the right cardiophrenic angle.

Soft tissues along the lateral aspect of the right hemithorax have become edematous.
There are innumerable new subcutaneous nodules,
of varying size, throughout the thorax and abdomen.

A bilobed LUL mass (3/46) has increased from 1.1 cm to 1.3 cm. There is a new left apical nodule (3/25).

ABDOMEN:

Metastatic disease has also progressed, at a rapid rate, throughout the abdomen. There are new
foci of disease in the peritoneum,
anterior to the spleen as well as adjacent to the transverse colon (4/154). Numerous new
hypodensities in the pancreas represent metastases,
including a relatively large mass in the head the pancreas (4/142). This lesion measures 1.7 x 1.7 cm.

Neither lytic nor osteoblastic bone lesions are identified.

IMPRESSION:

1. Dramatic progression of metastatic disease in the thorax and abdomen

Radiology Report For U2580023

Page 2 of2

2. Significant interval growth of right axillary metastases, with occlusion of the right subclavian vein,
and the development of extensive venous collaterals.

3. Numerous new subcutaneous nodules; interval enlargement of previously noted nodules.

4. Extensive intra-abdominal metastatic disease, involving, but not limited to, the pancreas and the mesentery.

5. Modest increase in the size ATTENDING RADIOLOGIST AND PAGER 002606 MARGLIN STEPHEN MD (206)541-44

of lung metastases NUMBER

MARGLIN, STEPHEN

I have personally reviewed these images and I agree with the report above (or as edited if so indicated below) .

Attending Radiologist: MARGLIN, STEPHEN /signed by/ MARGLIN, STEPHEN

Last Edited on: 12-jul-2007 17:02 Finalized on: 12-jul-2007 17:02

MRN: U2580023

Name: CYNTHIA MCCRARY DOB: 02-mar-1959 SEX: F Status: F

- end of document -

https:/ /mindscape.mcis.washington.edu/mindscape-uwmc/mindscape.cgi? Jad _ doc+U258... 7/17/2007

Cynthia's Comments:  6/27/07 8:38 am

This disease is progressing.  There is not a day that goes by without me seeing or feeling a new lump.  The lumps and discomfort used to be confined to my chest and back.  Now I feel small (pea sized) lumps on my legs, back and scalp.  Just in the past 3 days I have noticed a persistent ache (like after a cramp goes away) in my right calf and in my left thigh in front above my knee.  I can’t feel any lump there, but it is a feeling I have never had before and it has never subsided.  This morning I woke up with bilateral (both sides) low back pain.  That is where the kidneys live, so maybe they are getting tired of filtering out the pain medicine I take daily. 

            The pain has been well controlled since Saturday when I started taking one 10mg oxycodone every 12 hours.  By the end of 12 hours I can tell it is time to take another.  The changes I feel in my legs are concerning to me because I have been thankful to be able to walk around.  If I couldn’t walk, my quality of life would be impacted a lot.  I knew this disease was aggressive, and I know that (as of today) it has been 2 months since I first saw the enlarged lymph node by my collar bone, so time is passing.  But I still am surprised by visually being able to see things progress on a daily basis.  We all know people who are living with cancer, many for years.  This melanoma is different than most other cancers.

Cynthia's Comments:  6/20/07  7:36 pm

Donna and I got to Seattle Cancer Care Alliance (SCCA) early and got my blood drawn.  Then we went upstairs to the 4^th floor for my 1:00 appointment with Dr. Thompson.  We were an hour early so we decided to go get something to eat at the cafeteria.  Dr. Thompson was in the cafeteria too and he stopped to say hello.  We ate a sandwich and went back up in time to be called in for our appointment.  They weigh me every time because they calculate your chemo dosage based on your weight. 

When Dr. Thompson joined us in the exam room, he asked me how I was feeling and if I had any new lumps.  I told him yes, and he had me get up on the exam table to see them.  He noticed that the biggest lump below my right collarbone looked bigger.  Then he felt the new lump on the right side of my neck, one on the right below my armpit, one below my right cheekbone, and another on the left of my spine toward the middle of my back.  He said that the chemo medicine they had given me was not working and that we should consider some other alternatives.  One alternative was a chemo drug called Taxol.  It would make all of my hair fall out and there is a 10-15% chance that I would have any response to it.  Another alternative was a pill that might not be covered by insurance because it is not FDA approved for use with melanoma.  It is approved for use in Kidney cancer, but insurance might not cover it and it is very expensive.  It also offers a 10-15% chance of having any effect.  He also mentioned a Dr. in Portland that had a trial drug, which had never been used on humans.  He mentioned other medicines that would impact my quality of life immediately by making me very sick, and I told him I was not interested in trying those (which also would not give me any better chance of slowing or shrinking the tumors).

He said “watchful waiting” might be the best course for me, and trying to take measures to treat the symptoms that I am having.  If a CT would show the location of the tumor on the left shoulder, we might be able to do radiation in that area to help relieve the pain.  This approach makes sense to me and seems practical.  I asked the doctor about my lab work today-specifically LDH which is an enzyme that is elevated with melanoma.  On May 23, my LDH was high (297).  Normal is between 80 and 190.  Today, my LDH was over 400 (I will get the actual number tomorrow).  So lab values confirm that there is more cell destruction from the melanoma tumors.  When the melanoma destroys cells, they release LDH enzyme into the bloodstream.  The level of that enzyme is what is being tested.  I asked Dr. Thompson what kind of numbers he would expect to see when I get near the end.  He said they could be in the thousands, and that it is just a number, but that the fact that the number was going up tells him that the chemo is not working. 

He said there was no point to me getting another chemo treatment today.  He have me paperwork about the other two options we had discussed in case I decided I wanted to try either of them.  Of course I wasn’t sorry to hear I would not be getting chemo, and I was not surprised to hear that things are progressing since Dan and I have noticed new lumps this past week or so.  If the chemo is not working, I would rather find that out before undergoing another treatment.  I told Dr. Thompson that it seems that nature is taking its course, and there is nothing that man can do to alter it.  I did ask him if the tumors in my neck would pinch off my blood supply or breathing.  He said no, they would grow out not inward because the trachea and blood vessels are stiff enough to maintain and the tumors would not crush them.  That was a relief to hear. 

So, Donna and I came home and I am not feeling ill from chemo.  I told Dan and both of my girls called while I was still at SCCA.  I called Eileen and told her tonight.  She said, “I can’t believe this is happening.”

6/9/07    
Medical Articles describing appropriate protocall for 1mm biopsy Melanoma have been posted on the "Melanoma Page"

Cynthia's Comments: 6/8/07  8:52 am

Would I be dying now if the doctors had done something different when I
first found out that the mole I had was melanoma?  I think it is an
important question to answer because if we are wondering about this, I'm
sure others are too (I have wondered about it and somehow feel better to
know that there is nothing that could have been done differently).  The one
word I have heard most often about melanoma is that it is unpredictable.  I
don't think a human being or a medical test could have predicted this
outcome and I don't think a more aggressive treatment in the beginning would
have changed a thing.

When I first found out that I had melanoma, the treatment protocol was to
remove the mole and a wide area of tissue around it (the margin of skin
around mine was negative for any disease). This treatment protocol is based
on the thickness of the mole (1mm or less invasion into the skin, which is
considered "thin" in melanoma language) and another indication of how
invasive it is called Clarks level (mine was Clarks level 111).  Other good
prognostic factors for my tumor were that the cells in it had a low mitotic
rate (were not multiplying as rapidly as some others) and that there were no
ulcerations (it was still encapsulated).

I questioned the doctor who removed the tumor about doing a sentinel node
biopsy where they inject die into the lymph nodes near the mole in an
attempt to see if the disease has spread.  He showed me statistics and the
current information which indicated that doing a sentinel node biopsy would
not have any effect on survival.

Now that we know the disease has spread, my family has expressed anger at
the doctor because they have heard of other people who had melanoma removed
and survived.  They believe that the doctor did not "go deep enough" or that
if he had removed the lymph nodes at that time, the disease in the lymph
nodes would have been removed with them.  I was also asked if the protocol
that was in place in 2004 has changed.

The protocol has not changed.  In fact, this morning I sent 2 articles to
my parents and Eileen that confirm that the risk of metastasis (spread) to
lymph nodes is low if the melanoma thickness is less than 1mm (like mine
was).  The most current article said that people with melanomas 2-3mm thick
should be considered for sentinel node biopsy, but some of them are even
treated with excision (surgical removal).

It makes me feel better to know that nothing could have been differently to
foresee or prevent this outcome.  My original treatment was done at Virginia
Mason in Seattle where up to date protocols were followed.  If I showed up
there today with the same scenario, the same action would be taken.
Melanoma is unpredictable.  With the information available to us we made the
best choice and I would make the same choice today if I had it to do over
again.  No new information has changed the protocol and the odds were 70%
that I would be disease free in 5 years.

I think it makes us feel safe to blame someone because it is terrifying to
know that no human being or science can save us from some things.  It
doesn't seem possible that a person who looks healthy and has lived a fit
lifestyle could be struck down by something, and no one can do anything to
stop it.  We have such promise and success in treating many cancers, and
early detection gives people better odds.  Melanoma is the exception because
the prognosis is so bad.  It defies logic that a small freckle that looks
harmless could let thousands of microscopic "seeds" spread to distant parts
of your body in the bloodstream.  Why is there such a thing as this in
nature and biology?  I guess it is just my time, and nothing could have
changed that.



Cynthia's Comments: 6/6/07  7:02 pm

Today I went to Seattle Cancer Care Alliance (SCCA) for my 10:00 blood draw.  In the elevator I saw a young woman (in her 40’s) with an older woman, her mother I think.  The younger woman was carrying a brown bag and wearing a synthetic looking wig.  It appeared that she was a cancer patient coming in for her chemo with her Mom for support.  She checked in at the lab in front of me and took her seat among the dozens of others.  When I checked in, the receptionist couldn’t find my “orders.”  She asked me how they would be drawing my blood today.  I asked what she meant and she wondered if it would be from my arm, through a pic line or a porta catheter (devices they “install” to make it easy to get blood and deliver medication). I told her my arm and she told me to have a seat and that she would talk to someone upstairs and let me know what she found out.

I was surprised that I felt tearful. Something inside me was screaming “I DON’T BELONG HERE!”  But I knew I did belong there.  I wanted to talk to the others, find out what they are “in for,” and hear what kind of hope for a cure they might have (most probably have a better prognosis than mine).

 I took my seat and looked around at all the others who I knew were there because they have cancer.  I saw a thin young man (about 14 years old) with a baldhead who had a fanny pack which was infusing his chemo away from the hospital.  Such a young person going through treatment-sick and thin.  A little black child came out of the lab with her mother.  She couldn’t have been more than 3 years old.  A group of 5 or 6 people to my right was within earshot. One lady was telling the others about her companion who was undergoing radiation therapy, and how his skin all over was red, just like if he had been exposed toradiation from an A bomb.  One of the men seemed to know exactly what she was talking about and commented about skin peeling off all over your body.  Another man spoke up and said he had been a chef for 35 years and he was not interested in food.  But his mother had made chicken and stuffing and he was surprised that he ate it and it tasted good. They said that eating 3 ounces of food was good and that the trick was to eat small amounts frequently if you could manage it.  Another man in the group listened silently.

My name was called and I was told to go upstairs to my care coordinator to find out what happened because I was not having a blood draw today after all.  I went up to the 4^th floor.  The care coordinator called me by name, which surprised me.  She said she remembered names.  I showed her the schedule I had been mailed.  She said the schedule had been mailed when they thought I was going to participate in the experimental drug trial.  She apologized that I came in and confirmed that my next appointment was on the 20^th when I come in for my next chemo treatment. 

I was happy to leave untouched, but still feeling like I was going to cry.  I realized that participating in the experimental drug trial definitely would have meant more time spent giving blood, being monitored, and going in for extra imaging and eye tests.  I remembered that I would have had to get my eyes dilated again today and there was another appointment they had me scheduled for.  I feel glad that I chose the “regular” chemo that does not involve all of these extra visits.  I don’t want to spend the time I have left here undergoing tests. 

I wish I weren’t a member of their group, but when I see all the others at SCCA who are fighting cancer I know that their lives are consumed by their treatment and that the people in that place can talk about the things they are going through without fear of upsetting anyone. 

When I got back to the parking garage I did cry, but I still wasn’t sure if the tears were sorrow, anxiety, despair, or relief that I was not there again for another chemo treatment.  There were others arriving, waiting for a parking spot as I left.  Hundreds of people all coming there for the same thing.

Cynthia's Comments: 6/3/07  11:45  am

I wish my left shoulder would quite hurting.  It seems the last couple of
days that it has become more of a constant annoyance (rather that ebbing and
flowing like it had been).  This is disturbing because I had hoped that
chemo would relieve the pain, but so far it has not worked that way.  Maybe
further treatments will give more of a result.  Yesterday was rough because
I didn't eat in the morning.  I started to feel queasy but by then it was
too late.  I threw up a little, and then forced myself to eat.  I laid
around all day feeling uncomfortable.  I didn't take anti nausea pills
because I wasn't nauseated, just had unrelenting shoulder pain all day. I
took a 5mg oxycodone at about 10:00pm. I woke up every few hours and had to
take another pill at 4:00am.  That helped me sleep till around 7:30am, but
the shoulder pain is still with me.  I decided to get moving and try to get
out of the house to do something today so maybe it will take my mind off the
pain and help me sleep better tonight.  Dan thought I should take another
pill, but I really don't want to do that during the day.  I have tried to
take those at night and I don't want to become immune to them.  Plus, I
don't want to feel doped up during the day and then unable to sleep at
night.
I am really tired of feeling uncomfortable in my own body, and I know it's
just the start.  Sorry to complain, but I wanted to write and tell people
what is going on.  Yesterday was not a good day, but I am hoping that today
will be much better.

This morning Donna picked me up at 7:40.  Once on 405 we realized that traffic was at a standstill.  We got off the freeway and tried taking back roads, but progress there was so slow that we had to call to let them know we would be late for our 8:30 appointment with oncology Dr. Thompson.  The regular nurse was out of the office so I called back and spoke to the receptionist who said we could come in even though we were late.  About a half hour later Dr. Thompson himself called on my cell phone wondering where I was.  The receptionist did not let him know I was on my way.  I hoped he would turn us away, but he said to continue to drive safely and come in.

            We were ushered in shortly after arriving and I told them that I had decided not to participate in the level one trial.  I did not want to be the person trying out the newest “software release,” testing it for bugs.  I felt more comfortable taking a medicine that had been tried on many others and one that has well understood remedies for the side effects.  Dr. Thompson understood.  I told him that I read that 90% of people had nausea and vomiting.  He felt that was overstated, and that in his experience the people who experienced that were more like 10%.  I asked how we would measure the benefit I might get from the chemo, and if it was true that there would be an 80% chance that I would have no response at all.  He said no, the way they measure the response for the 20% who do respond to chemo is if their tumors shrink in size 50%.  If a person’s tumor shrinks less than 50%, they do not count that as getting the desired response.  So if my tumors shrunk some (like 30%), I might get relief from pain and the disease might be slowed down, but I would not be considered a person who achieved the response they are hoping for.  He reassured me that the side effects of the DTIC chemo (the FDA approved type) were fairly mild and that many people tolerate it very well.  We agreed that I would try to take my first infusion today, and he left to see if the schedule would allow me a spot today in the infusion lab. 

            A lady who helped coordinate my care took me out to the receptionist area.  She have me a prescription refill for the 5mg oxycodone so I won’t run out (I can still take those to help me sleep even though I will have anti nausea medicine to help with chemo side effects).  The infusion lab had a spot for us, and Donna wouldn’t let me slip out the exit door, so we turned in the prescription and went to the infusion lab.  We were soon told to go to room 19 where we met my nurse.   She has been administering chemo for 20 years and was very proficient.  She told us that the DTIC was an “achy” medicine that had a tendency to make the vein ache when it is being infused.  She said we could work together to make it comfortable because she could infuse sterile saline to dilute the medicine.  If she infused the DTIC undiluted, the infusion would take 1 hour.  I told her my concerns about nausea and vomiting.  She took it as a personal challenge to make the treatment go easy for me so I would come back for my second treatment in 3 weeks.  She assembled a pill to relax me, some anti nausea pills that would help me for 24 hours, and some other anti nausea medicine that she put in through my IV.  She gave me these medicines at 11:40 to give them 20 minutes to take affect before starting the medicine. A cart with sandwiches for lunch came by, so Donna and I split a ham sandwich.  There was cottage cheese and a cookie. I think having a small amount of food in my stomach is a good idea.

I must admit that I literally did not feel her placing the IV needle, which was a pleasant surprise.  She is very skilled.  There is a lot to be said about having an expert do what they do best and practice daily.  The nurse told us that some of the unpleasant side effects and horror stories we might have heard about chemo are not from patients treated at Seattle Cancer Care Alliance.  They are from patients in other areas.  Thank God we have the education, technology, and best medical care here in Seattle.  Donna underwent chemo and radiation for breast cancer 9 years ago, and she could see how far cancer care has evolved since then.  The nurse assured me that the medicine she gave me would keep me comfortable, and she sent 2 more prescriptions to the pharmacy that would give me medicine to take at home to keep nausea at bay during the next few days.  She said the queasy stomach could last for a week but that it was best managed by eating frequent small meals.

            The IV was in my left forearm.  A few minutes after the DTIC infusion began; I did feel the ache the nurse had warned me about.  She turned the speed of the drip down and turned up the speed of the diluting saline.  At that tolerable speed, the infusion took an hour and 45 minutes.  I didn’t feel any ill effects at all.  I did have some left shoulder pain, but that only served to remind me that the chemo could shrink the tumors to give some relief.  Donna stayed there, held my hand, worked on her crochet, and went down to the pharmacy to get my medicines for me.  It only cost $27 for all 3 medicines I needed.  I am so thankful that Aetna insurance is covering so much of what I need!

            The infusion began at noon and ended at 2:00 (they flushed the IV line after it was done).  I felt a sense of relief and the experience went much better than what I had imagined.  Donna insisted that I follow instructions and schedule my next treatment 3 weeks from now (June 20 at 12:00) before we left. 

            It has now been 4 hours since I completed the treatment.  When I got home at 4:30, I started to feel a little bad and had a slight headache.  But Dan fixed me some food and I felt better after I ate.  I don’t know what the next 48 hours will bring, but so far I have not felt like throwing up, and I have medicine to help keep me on an even keel.  I have always dreaded having to undergo chemo, but I must admit that, so far, it has not been a terrible experience at all. 

Cynthia's Comments: 5/29/07  2:33 pm

I called and spoke to Dr Thompson’s nurse, Jon this morning.  I found out that the MRI did not show spread to my brain.  I told Jon that I was struggling to convince myself that there was enough potential benefit to undergoing chemo to justify enduring the side effects I read about.  Right now my quality of life is pretty good-I was able to do some weeding yesterday and today, and can function pretty well.  I read that 90% of people who get the FDA approved chemo throw up from 1 to 12 hours afterward.  Jon said there is no way to know how it will affect each person, and if each person will respond to the medications they give to control the nausea or not.  I wanted his to try to give me some idea as to if I am at the beginning, middle, or more toward the end of the dying process.  He said the places where I have tumor (my right axillary and lymph nodes under my collar bone, beneath the skin of my butt and in 3 lobes of my lung) are not places that will kill me soon.  When the tumor gets into my liver and brain, those are vital organs that will result in my death.  I asked him if the 8mm tumor by the hilum of my lung (the hilum is where the blood vessels and nerve supply comes into the lung) would pinch off the blood supply to the lung.  He said those blood vessels were fairly stiff and that melanoma does not invade structures, but if it came up against the stiff blood vessels it would just grow in another direction and not pinch off the flow.

I wondered if the side affects of the chemo would get worse with every treatment.  He said no, usually the first one was the worst as far as side affects go, but that it took longer to “bounce back” from the treatment as time went on because of the fatigue.  The side affects usually last 1 or 2 days.  I told him that one reason I did not want to undergo the level one trial of the experimental medicine was that it requires a lot of extra testing (more blood draws, trips to the doctor for eye exams and extra CT and MRI imaging, and even biopsies which I already declined when I signed the forms to consent to this).  I don’t want to spend the time I have left driving to doctor’s appointments and going through a bunch of tests.

Jon said that anything you can do to slow melanoma down is worth considering, even if you decide not to do it.  He said the experimental medicine might improve the response I could get from the FDA approved drug.  When all is said and done, I am still having a hard time convincing myself that a 20% chance that I will get any response is worth the instant feeling bad.  And the response (if I did get one) is temporary and hard to measure since we don’t really know what course this disease would take if I did nothing.  I have heard from many people that they would not undergo chemo if they had it to do over again.  I don’t know if I am looking for something to justify not doing it, but I have heard that.  The Estate attorney I saw (who sees many people facing cancer and the end of their life) told Claudia and I that some of his clients regretted undergoing chemo because it took away the quality of life they had left right away. 

Jon said I should come to my appointment with Dr Thompson tomorrow at 8:30, no matter what I decide I want to do.  I think they get you in there and before you know it someone is starting an IV bag and you are on your way!  As soon as I hung up, my Mom’s best friend, Donna called.  She has been through treatment for breast cancer, chemo and radiation.  She has come forward and offered to take me to this dreaded visit tomorrow.  She is in Anacortes (an hour and a half north of my house) but is still willing to get up at the crack of dawn to drive down here to be here for me tomorrow morning.  It means so much to me because Dan needs to be at work so he can financially support us.  Even now I don’t know what I will do tomorrow.  I am still torn.  Sometimes I think chemo is a good chance for people.  But in my situation, I still find the potential benefit to be so slight that it is hard to convince myself to submit to it. 

Cynthia's Comments: 5/23/07  5:01 pm

Friends and family:  This is what I read in the paperwork regarding the drug the Dr. is suggesting that I try:

“Most patients (90%) treated with DTIC have anorexia (loss of appetite), nausea, and vomiting with the first few doses.  The vomiting lasts 1 to 12 hours and the medications given to try to prevent or treat this may or may not work.  Rarely, patients with very bad nausea and vomiting have to stop DTIC treatment.  Rarely, DTIC has caused diarrhea.  It may be helpful to restrict what you eat and drink for 4 to 6 hours before treatment.  Usually the above symptoms go away after the first 1 to 2 days.”

I am having second thoughts about taking any chemo at all.  My stomach tends to be sensitive, and throwing up for hours in exchange for a 20% chance that the dying process can be prolonged is not sounding too good at this moment.  What a bummer!


Cynthia's Comments: 5/23/07   4:24 pm

I did not sleep well last night but knowing that Shalia would meet me at for the doctors appointment this morning helped me get myself to it.  Dr. Thompson said that the goal of the chemo would be to reduce the size of the tumors, and slow their growth, even though that would be temporary.  He said there would be a 20% chance that I would respond to the treatment, and that we would probably be able to tell after 6 weeks (2 treatments 3 weeks apart) if I was responding.  There is a “clinical trial” of new medicines where different combinations are being given to people in the study to see which work the best.  You don’t know which combination you will get until after you sign up and they give you that information.  One combination is a drug that has been used for many years and it takes about two hours to have that infused through an IV.  Another combination has 5% of another drug added into it, which adds another hour to how long it takes to get it, and it adds “flu like” symptoms to the fatigue that is expected with any chemo.  A third combination gives 10% of this new drug (no longer to administer the dose, but potentially twice the added symptoms and twice the potential benefit).  The whole thing sounds like nothing I want anything to do with and I told him so.  He said I was going to be very involved with getting medical care anyway, back and fourth getting medicine and doing different treatments to help me tolerate my symptoms, so I might as well try something like the chemo on the chance that it might help.  He could not tell me how long it would work if it worked, but he felt it might help with my pain.  He said the side effects would only last a day or two after I had the treatments, and that there was not as much hair loss with this one as some others. When I asked him when I had to decide, he said probably this week because there were only 10 spots left in the clinical trial and when they were full the study would be closed.

In order to participate I had to have an EKG (test my hearts electrical rhythm), an MRI of my brain (to see if I have any spread of disease to my brain-if I do I don’t think I can be in the study), blood tests, and an eye exam (because melanoma can originate in the eye).  I had all of these tests today except the eye exam which I will have tomorrow at 1:00.  Then they want me to come back next week for the first infusion.

I just read through some of the paperwork.  It says that 90% of people who take the new drug experience nausea and vomiting that lasts from 1 to 12 hours.  Jesus Christ!  I am having second thoughts about this.  I am going to ask more questions.  One option is for me to take only the drug that is FDA approved (and has fewer side effects, and those effects are known).

Cynthia's Comments: 5/18/07  12:09 pm

It was an emotional night at our house and we didn’t sleep much.  Dan was crying when he called his boss to say he wouldn’t be in the next day.  His mother died at 49 of colon cancer and his stepfather of lung cancer, and he had hoped for something other than melanoma because he knew the prognosis was not good.

We got to the U of W early and were the only people in the reception area, waiting nervously.  Eileen called and had some very empowering words of encouragement for me, telling me that I would find out what tools I could use to fight the disease that day, instead of feeling helpless.  It really did put me in a better frame of mind and gave me courage to face what I was about to learn.

Finally it was my turn, and a male nurse, Jon Smith, called us in.  You could tell everyone we encountered there was expert in their jobs, they each had a role in the grim business of trying to help cancer patients navigate through getting treatment.

After Jon Smith told us what to expect, a female oncology resident came in, heard my story, examined my lumps, and noted my concerns.  Then she went and got Dr. John Thompson, the oncology expert and his nurse, Jon.

 Dr. Thompson said that surgery was not a good option because the lymph nodes were too big and in an unfavorable location.  He said there was a chemotherapy agent that would give me a 20 percent chance of reducing the size of the lymph nodes (called debulking), which might make it possible to remove them later.  This would not be a cure, but it might add a few months of time to my life.  He said the surgery would be “disfiguring” and that it would take some time of undergoing the chemo to know if I was responding.  I asked him how undergoing would change the outcome for me, and he said it wouldn’t, but it might prolong my life or improve the quality of life temporarily.  I asked him if I understood him to be saying that there was no cure, and he confirmed that.  I asked what I would really be gaining by prolonging the dying process if during those additional months I would be undergoing chemo and having surgery.  More time was the answer.  We discussed quality of life versus length of life, and he said that I would probably have less than a year to live.  Since the tumor growth seems aggressive, it could be closer to 6 months if I do nothing.  He gave me paperwork outlining the treatment we had discussed and a folder with contact numbers for support people at Seattle Cancer Care Alliance.  The female resident got me a prescription for pain medicine so I could sleep, and she brought in a social worker to give me some advice on how to help Shalia and Hillary cope with this prognosis.  The female resident cried during our discussion because it dealt with me leaving my children on this earth without me, and my wanting to protect them from the pain I knew this was causing them.  The social worker had a good perspective and put me in touch with counseling for all of us from people in our community who specialize in end of life issues.  

We took our information and our heavy hearts and left at around 10:30.  We were hungry but too upset to want to eat.  I wanted a hamburger so we ended up at The Brown Bag in Kirkland. We ate and tried to absorb what we had learned from those most knowledgeable about this disease.

That night there were more tears and I called my parents to tell them-more bad news.  

Cynthia's Comments: 5/17/07 6:26 am

            Last night was the first time I had to take pain medication.  The pain in my left shoulder blade prevented me from sleeping.  The shoulder had bothered me all day, and I finally had to admit that the time had come to use the 5mg oxycodone I had been prescribed.  It is a disturbing reminder that this disease doesn’t stand still-it moves forward, growing and putting pressure on structures inside.  I hate the idea of needing pain medicine, and watching the clock to know when I can take more.  I have never taken pills and have gotten sick to my stomach when I was given Percocet or other pain pills in the past, so I just did without. .  I do dread the thought of suffering.  When the quality of life is poor, why can’t we “put down” humans the way we do animals?  It seems humane.  Perhaps I’m a coward, but if there was no hope of things improving and such a thing was available,  I would want to put an end to suffering. 

 But last night the pill I took did its job and allowed me to sleep comfortably.  This morning the pain is not bad.


Cynthia's Comments: 5/16/07 6:49 pm

Seeing the doctor about a suspicious lump

On Tuesday May 8, 2007 4:30 pm Biopsy Results

On Tuesday May 8, 2007  4:02 pm Further Tests Being Scheduled

Hi everyone,

Dr. Mann,

            Hello, I completed the contrast CT this afternoon Friday May 4, 2007. My patient number is U2580023. I would be interested to know what organs are involved and the specific extent of the metastatic disease that the CT revealed.

            Thank you for your compassion today and for helping us get through this.

Sincerely,

Cynthia McCrary

Response from Dr. Mann RE: CT Scan Results 
Received Monday May 7, 2007



Ms. McCrary,

 I am pasting the results of your CT scans below. The only reservation is that I have not personally seen the films myself yet. It demonstrated the nodes, and some subcentimeter lung nodules and some nodule in the subcutaneous tissue of the buttock region. The significance of these are unclear at this point, they could certainly represent metastasis but I am not sure of this. Next step is seeing what the results of the FNA are, the pathology is of this is of course absolutely key. If FNA is not definitive then biopsy of the nodes as outlined will be important. At some point a PET scan would be useful, and consultation with medical oncology or hematology, depending on the pathology. I wish I could offer you more definitive answers, or some clear good news, but at this point we are still in a data gathering mode. Wishing you strength and resolve at this very difficult time.

CYNTHIA MCCRARY U2580023

5178204 04-may-2007 16:19 Requested by: MANN, GARY

CT CHEST W CONT

P R E L I M I N A R Y

Diagnosis:

H/O ABD WALL MELANOMA RT INF---/AXILLERY LN'S LIGHTLY ----

________________________________________________________________

CT CHEST, ABDOMEN AND PELVIS

INDICATION:

Abdominal wall melanoma. Right enlarged axillary lymph nodes.

TECHNIQUE:

CTB A11

Exam: CT chest, abdomen and pelvis with IV contrast

Type of scan: Single phase spiral

Superior Extent: Lung Apex

Inferior Extent: Ischial tuberosities

IV Contrast: Positive

Reformats: Coronal

Comparisons: No previous studies are available for comparison.

FINDINGS:

CHEST:

Multiple right axillary enlarged lymph nodes. One of them measures

2.5 cm and compresses the right subclavian vein. The other nodules

measure between 2 and 3 cm in short axis diameter. No enlarged

mediastinal lymph nodes. Left axillary lymph nodes are normally

sized. The heart, great vessels and pericardium are unremarkable.

-----------is normal in size. Trachea and bronchia are patent.

There is a 3mm lung nodule in the posterior segment of the right

lower lobe. Another 3mm lesion in the superior segment of the left

lower lobe. There is an 8mm nodule close to the left hilum (series

4, image 55).

No pleural effusions.

1 cm subcutaneous dorsal nodule (series 3, image 31).

ABDOMEN:

No liver lesions. Adrenals, kidneys, spleen, pancreas and bowel are

unremarkable. No biliary duct dilatation. Gallbladder is normal in

appearance. No free fluid or fluid collections. No enlarged lymph

nodes.

PELVIS:

Appendix is normal. No bowel abnormalities. Uterus and adnexa are

unremarkable. The urinary bladder is normal in size. No free fluid

or fluid collections. No enlarged lymph nodes.

No acute bone lesions.

There is a 0.8 cm subcutaneous nodule in the dorsal aspect of the

gluteal region (series 4, image 209).

6mm subcutaneous nodule in the left posterior gluteal region (series

4, image 186).

IMPRESSION:

1. Very large right axillary lymph nodes highly suspicious for

metastases. One of these large lymph nodes is compressing the

subclavian vein.

2. Three subcutaneous nodules in the dorsal aspect in the chest and

gluteal region. Differential diagnosis includes melanoma metastases.

3. Three lung nodules, the largest one measures 8mm and is closer

to the left hila and is suspicious for metastasis.

ATTENDING RADIOLOGIST AND PAGER NUMBER

282890 CUEVAS CARLOS J. MD