Hi all - Never thought I'd be here

MelissaV · Posted: Mon Sep 14, 2009 10:59 pm Post subject: Thanks WannaKnow

Your note made me cry, but thanks too. I'm just so sad. We also just lost my Dad to lung cancer three years ago, and he was a marathon runner! My sibs and I aren't ready to do this again.

Mom and I actually had a few good laughs tonight too. I'm in Chicago, and Mom is in Colorado, and we've exchanged Quarterbacks: Jay Cutler the big cry baby from CO to Chicago, and Kyle Orten from Chicago to Colorado. Both stink! We just laughed it up.

We call her every night.
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Adagio7780

MelissaV, like wannaknow says, your mom will greatly enjoy those occasions when she spends long stretches of time without anyone bringing up her condition. I remember having dinner with some old friends a few months ago, and the conversation and food were excellent. Towards the end of the evening, I was asked, "So how are you really doing?" Until then, I was doing great - I hadn't thought about dying for 45 minutes! Obviously you can't ignore what's happening, but it doesn't have to be a part of every shopping trip or lunch out. Make sure her friends know that.

My wonderful wife and I are, as you've read, on a great journey right now. Looming is a CT Scan and more tests in a couple of weeks, but tonight we splurged and are staying in a balcony room overlooking the Pacific Ocean. (We cooked hot dogs in the room on a George Foreman and ate them watching the waves crash onto the rocky shore - what a blast!) I'm not a deeply religous man but still, I spend a few minutes each day thinking about all the people on the forum and praying for their comfort and strength. It's good to hear that you and your mom can share a few laughs.
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MelissaV

Good morning Floyd: I'm so glad you are enjoying your vacation! Have a great trip. Thanks for reminding me of the importance of forgetting about the cancer for awhile, and just enjoying our time. I do tend to ask her how she is feeling a lot. Maybe I'll stop, and let her tell me how she feels when she wants to talk about it.

Mom, and my Sister, brother-in-law, and niece and nephew flew out here for a really fun Labor Day weekend. In our town, about 20 miles from the city of Chicago, we have a great Labor Day celebration. Parade, fireworks, music, and amusement rides. Mom had her chemo treatment on Tuesday 9/1, and hopped on a plane that night. She was very tired about 48 hours after the treatment so we scaled back our plans a bit, but she went to the parade and fireworks all walking distance from our house. She just sat on a park bench one afternoon and watched me play tennis with my niece and nephew. She had a great time! We also invited some people who have been friends of hers for over 40 years. A little tearful when Mom said goodbye, but we had lots of laughs too.

Mom's tumor is located at the head of the pancreas, and she will have a permanent stent placed in her bile duct during her off week from her Gemzar (round 2).

Lucy: Good luck in Europe with your Mom. I hope to hear all about your trip, and will be thinking about you too! I'm very interested in knowing how the Gemzar is working for her.

Take care, Melissa
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MelissaV · Posted: Wed Sep 16, 2009 9:27 pm Post subject: Stats from my Mom-Sarah

Hi Floyd: Please enjoy your vacation, and perhaps read this when you return. I don't want you to respond while you are enjoying your vacation.

I told my Mom about you, and this site, and she said she would love to have your forum link. So, hopefully you will hear from her, and no longer from me.

I obtained some of her statistics from baseline to her after two treatments. Some of them I understand, and others I don't. When you get home from your vacation, and if you have time, perhaps you can help me out with these.

Tumor marker: CA 19-9 in July 160. No new test as of today.
Hemoglobin: 15.3 in July, after 2 chemo treatments 14.1
White blood cell count: in July 6.8, after 2 chemo treatments 3.8
HCT: 43.3 in July, after 2 chemo treatments 39.5
PLT: 225 in July, after 2 chemo treatments 115
NE: 5.2 in July, after 2 chemo treatments 1.9

I understand the tumor markers, Hemoglobin, and white blood cell count, but I have no idea what HCT, PLT and NE are.

I'm flying out to CO to see Mom in a few weeks. Maybe I can meet with her Oncologist to discuss this with him.

But in the meantime, I am going to suggest she come here to talk to you because you are so knowledgeable, and compassionate. She is very willing to come here too.

Warmest, MelissaV
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LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

Dear Melissa,

thank you for your kind words.
I know you didn't ask me, but maybe I can help out with some of the acronyms from your mom's blood test.
HCT - (hematocrit) tells the doctor the amount or percentage of red blood cells found in blood.
PLT is a platelet count, and NE is neutrophil count, but it can sometimes be expressed in percents as well, not sure if that's the case with your mom's test results. Google will produce more information regarding reference ranges, it has been my best friend since mom's diagnosis.

My mom has been on Gemzar regimen since April and is doing reasonably well. Occasionally her hemoglobin will drop below reference ranges, however mom is taking a lot of supplements and usually manages to bring her blood levels back up during her rest week.
Last time her oncologist noted how great mom is looking, considering the amount of time she has been on Gemzar and how advanced her disease is.
During the last ultrasound exam, the radiologist couldn't locate any mass on pancreas, so we assume it has gone away, but the liver mets are still very much present. In any case, mom is not in any pain, her energy levels vary but she is a very strong and positive person, and if anyone can will the tumor to go away, my mom can.
As for her quality of life, she always was very energetic and always on the move. She still is doing everything with the same zeal, she just gets tired sooner... or maybe has learned to listen to her body better, and takes breaks when she needs them.
I am hoping your mom will continue to tolerate Gemzar well, our experience with it has been really great. Your mom sounds very energetic and full of life, I can't believe she was on a plane to visit you the same day she received her chemo treatment!
Tuesday seems to be a chemo day on this thread, my mom also receives her chemo Tuesdays, and I believe so does Floyd.

Wishing you and your mom all the best!

Floyd, needless to say, I hope you and your wife are enjoying every second of your trip.

Best wishes to all

MelissaV · Posted: Thu Sep 17, 2009 6:52 pm Post subject: Thanks!

Dear Lucy:

Thanks so much for your wealth of information. I will for sure get on line and check this all out. Sorry you have to be so far from your Mom through all of this. I even feel horrible just being 1,000 miles away!

What country in Europe does your Mom live in? Are you out there now?My sister and I took my Mom to England, and Scotland for her 60th birthday just over 10 years ago. It was April, and we were very lucky to have sunshine in London for the whole time we were there. It snowed in Scotland, but being from Chicago and Colorado didn't stop us at all. We had a great time, and some hilarious memories at my expense. If she is reading these now, she will be laughing for sure.

I hope Mom joins the forum. She is a wonderful woman who has been through a lot in her life, and still retains her great sense of humor.

Best to you, Melissa
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LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

My mom lives in Croatia, which is on the Adriatic coast, just north of Italy. It has beautiful climate, Indian summer season hasn't even started there yet, it usually happens mid October when we here in Canada have been known to get the first snow of the season.
It is very hard for me, being five thousand miles away.
I call mom every day, but sometimes its too hard to talk and it becomes too much for me. Then I feel bad about not calling. Its a vicious circle.
I have two sisters who live close to mom and visit her daily. Knowing that they can and are there for her gives me a lot of comfort, yet it makes me question a lot of the decisions I made that have brought me where I am now.
Since there's nothing else to do but think, I have thought myself to the edge of depression, and sometimes I just go over it.
Sometimes the sorrow over impending loss is so debilitating that I can't eat, sleep, or otherwise function. And being so far away, it is hard to enjoy the time we have left when I can't even hug or kiss her.
Mom also isn't aware of the outcome statistics of her disease, and we've decided to keep it that way. It has worked well so far, she is very positive and a fighter. However, that means there's things I can't talk to her about, at least not over the phone, so I keep it all bottled up inside.
So you see, I am really looking forward to next weekend when I'll be sitting with her in her garden and enjoy the sunshine. Even if I never get to say anything... just to feel her presence and hear her talk will feel like Christmas for me....

MelissaV

Oh Lucy,

I'm so sorry you have to be so far away, and I had no idea you are so paralyzed by your Moms diagnosis. I really hope when you see her, that you can find a way to enjoy your time with her. These moments will remain in your memories and dreams for years to come.

My Dad who divorced from my Mom over twenty years ago, passed away from lung cancer three and 1/2 years ago. He lived in California and was a marathon runner. Anyhow, he actually believed he would beat his disease even though he was stage IV. He did hang in there for four years from diagnosis. We did encourage him of course, but when the cancer had metestasized to his brain, and HE realized that the end was near we could have conversations about the practical issues. Up until then we just had fun, real fun! I still have dreams about him being alive, and it seems so real. I cried every time I left him.

Mom on the other hand is more realistic about her outcome, and much more practical about what she feels we need to do. We do have great laughs still. Floyd has given me some great advice. Maybe we shouldn't discuss end of life issues unless our loved ones want too? Maybe our loved ones who are dying from this horrible disease don't want to be reminded of it either always? I still cry every time I leave her, or get off the phone after speaking with her.

This weekend I went to Illinois State University with my boyfriend of 15 years to watch my daughter who is a Junior in college down there play softball. She also adores my Mom, and is also very saddened by her illness. She crys a lot about her Gram too.

I guess what I am saying is that it is o.k. to be sad, but I hope you can spend this time with your Mom and truly enjoy the time you have together. You will really look back on these moments, and have the best bittersweet memories forever.

Take care, Melissa
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MelissaV

Hi Floyd:

Well, you left us all jealous cooking on the Foreman, and watching the beautiful Pacific Ocean. What happened next?

I hope to take time to see the country as you have!

Regards, MelissaV
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Adagio7780

Well, since MelissaV asked, here's a really brief synopsis of our trip: Flew to DEN 9/8, rented Buick, stopped by Walmart and bought a $20 electric skillet, plastic tote and a 12V cooler and stocked it with ham/cheese/eggs/sausage, etc., then drove to:

Custer, SD (overnight Tues)
Mt Rushmore/Badlands Wed 9/9
Sheridan, WY (overnight Wed)
Yellowstone (Thurs-Sun)
Grand Tetons Sun then to Ontario, OR (overnight)
Crater Lake Monday then to Crescent City, CA
Redwood National Forest and down Pacific Coast Highway Tuesday
Ft Bragg, CA (overnight)
Crossed Golden Gate Bridge Wed pm, night in San Fran
San Fran touring then to Yosemite Thursday
Tour Yosemite Friday
Tour Yosemite Saturday then to Ely, NV (overnight)
Tour Arches National Park, overnight in Moab, UT
Monday morning gave grocery tote, skillet, and toaster to motel maid
Return to DEN Monday with side trip to Aspen
Turn in Buick (4,848 miles!!) Shipped 12V cooler back home UPS stuffed with trinkets/shirts/junk, then flew home Tues, 9/22

The beauty is unimaginable, and it went on for days on end. We cooked most meals in the motel room and saved a bundle. It was a total blast, a trip neither of us will ever forget.
Very Happy

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Adagio7780

Of course, looming all the while we were out west was my next CT Scan, the results of which I got today:

The CT Scan shows that the primary tumor in the pancreas has not increased in size, but the other tumors on the abdominal wall have. My tumor marker count (CA19-9), which was over 10,000 in January and had fallen to 600 by July is now around 3000. All of this indicates that what was working before is no longer working. This was not unexpected, most of you know that it happens in virtually all patients sooner or later. Bottom line is that I have been taken off Gemzar and the study (clinical trial) drug, and the staff is looking at other treatment options, basically Phase I clinical trials. They have identified three or so that seem appropriate, one that they like better than the others. They are working with the drug company to get me into that one.

I have a great relationship with my doctor and we talked very frankly about the option of not continuing treatment at all, and he was adamant about two things: One, that given my overall health and manageable symptoms at this time, that he thought it best to continue some kind of treatment, and Two, that he would absolutely tell me when that time had passed. Since he brought up the 'T' word, I asked him how much Time he thought I had. He said he expected me to be in reasonably good health for another six months, but was not optimistic about 12 months.

Either of the new treatment regimens will have much less side effects than the previous one, and I will only have to travel to Duke once every three weeks instead of three times per month. I should have an answer in a week or so about which therapy I'll be getting.

I want to leave you with a thought about bad news. In a three week time span in January 09, I was told that I almost certainly had pancreatic cancer, that I definitely had pancreatic cancer, and that my cancer was Stage IV and that it was going to kill me. Since then I've gotten bad reports and good reports, but the news hasn't changed. This is the way I handle it. I don't consider today's report as 'bad news', because I was expecting that I would turn this corner at some point. I may sound pessimistic but I am only playing this hand as best I can. Rather I am optimistic that I can live my remaining days to the fullest extent my disease will allow. So don't let 'more bad news' pile up on you. You got your bad news when you found out you or your loved one has this disease, and that's about as bad as the news can get. From that point forward we have to try to make the best decisions we can based on the latest information we have. In the meantime, if one of these wonder drugs cures us, well I'm all for that.

Thanks as always for the thoughts and prayers.
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Man tracht, Got lacht (Man plans, God laughs)

Babs40 · Posted: Tue Sep 29, 2009 10:04 pm Post subject: Never thought I'd be here

Hi, Floyd,
I'm brand new to this Board, but really need all of the support I can get. My husband's tumor was discovered by accident last December during a CT Scan of his lungs as he also has Advanced Pulmonary Fibrosis. After many tests, we ended up in MUSC in Charleston in March where it was verified that his tumor was cancerous in the tail end of the pancreas..no symptoms, nothing....adenocarcinoma. Our worst nightmare for sure. We live in Florence so we opted to have six weeks of radiation and chemo locally. We returned to Charleston in June for another CT Scan - tumor had not budged. We opted for him to have seven treatments of Gemzar in Florence. He could only get through five treatments as the Gemzar was affecting his hemoglobin so badly which in turn affects the oxygen level going to the lungs. He began getting so shortwinded which worsened the condition of his lungs which is now irreversible. So he decided to discontinue his treatments as the CT Scan done last month after five treatments of Gemzar showed no change whatsoever. As of September 14th, he is in Stage 3....no pain yet or jaundice, Thank God!
After a lot of difficult thinking as to the next step to take, he has opted for no more treatment and our Oncologist agreed with him 100%....he was told to live each day to the fullest and to treasure the time we have left together. She told us that his tumor would not be going anywhere. He opted for no more treatment as he could not see living off of chemo and damaging his lungs even further and having to live in isolation for his duration. He is such a wonderul man, 71 years old, and a people person. So that is what we are doing - living each day to the fullest and praying to God for strength to get us through this difficult journey. I still feel I am going to wake up out of this nightmare. Tomorrow is our 31st anniversary and I guess all of you can imagine my thoughts. He developed a bad case of Bronchitis this week which was very frightening because if he contracts Pneumonia, that would be devastating for his lungs. He quit smoking 12 years ago, but the damage was already done. So basically he is fighting two major issues. Just wanted to share my story with all of you. God bless all of you who are on this most difficult journey. I pray for the day that more research will be done for this horrific disease. Thank you for listening.

Adagio7780

Thanks for writing, Babs40, and happy anniversary! I hope you and your husband can spend many happy days together. MUSC/Charleston is a wonderful facility and I'm sure you were in the best hands. I don't know much about the lung disease/prognosis, but hope for the best. My wife smoked until 10 years ago and is now 59, it is something that is always in the back of her mind. Your husband may not get much jaundice since the tumor is located away from the head of the pancreas. That is my case - mine is mid-body pancreas. It may, however, involve blood vessels or nerves in his back and that will have to be dealt with.

I have been through Florence about a million times on the way to the beach (actually I sneak through Quinby) and have flown into the airport there on a few occasions, and to the farmers market. It's always HOT there!

Please keep us posted on your husband, and tell him we wish him well.
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Man tracht, Got lacht (Man plans, God laughs)

Babs40 · Posted: Wed Sep 30, 2009 9:53 pm Post subject: Never thought I would be here....

Thanks, Floyd,

Happy to hear you are familiar with our great City of Florence....we were able to go out for dinner this evening for our anniversary. We almost weren't able to as he developed bronchitis Monday. We were so afraid it was pneumonia, but, thank God, it wasn't. He has to be so careful because of his lungs. We are learning like all of you to cherish each day and to try to live each day to the fullest. As I tell our friends now, what used to be important is no longer important.......it's just things. Does anyone else feel this way?
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Babs1940

AnnetteSC · Regular Joined: 25 Sep 2009 Posts: 11

Just wanted to say, Floyd, that I've read your story and some of your replies here and I think you're an amazing man.
My thoughts are with you.
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~Annette

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