dukenukem
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A huge sigh of relief from everyone.
Know that you remain in our thoughts and prayers for the comfort you bring to others.
Know that the love and prayers from everyone on this site (and beyond) are with you.
Duke
“Tomorrow is the most important thing in life. Comes into us at midnight very clean. It’s perfect when it arrives and puts itself in our hands. It hopes we’ve learned something from yesterday.”
“There’s been a lot of stories about how I got to be called Duke. One was that I played the part of a duke in a school play–which I never did. Sometimes, they even said I was descended from royalty! It was all a lot of rubbish. Hell, the truth is that I was named after a dog!”
John Wayne
Dorien,
True, you cannot be fired. But, if you are looking for a new job, nothing prevents a company from not interviewing you in the first place. Almost impossible to prove unless they are really stupid.
Another option. Login, go to your Profile, then your Identity. Change your Name and Location. If this worked, you should only see that I am in Ohio, not the city.
Previous posts are probably not affected, but I will look after this one.
Update:
Nice idea, but Google still finds me. Will try one more thing. (Didn’t work – Google is very persistent.)I thought CC.org wants your real name when you apply to register.
Willow – your idea of registering anonymously will work if you do that from the beginning – doesn’t look like there is a way to change things after the fact.
It’s been a while since I posted here. Finished eighth round of gem/carbo two weeks ago, then got a CT scan. Results showed that primary tumor in liver had shrunk to 11.6 cm. CA19-9 has been steady about 60-130 for a few months. Alk-Phos steady about 140-180 for same time. Platelets continue to be low, 60,000 – 130,000. But generally high enough to support chemo.
Talked with oncologist this morning about the results of the CT scan. She was pleased with the results. Slow and steady progress. We agreed to cut back to only gemcitibane (eliminating carboplatin) for two rounds. Will then get another CT scan and see if shrinkage continues. Can easily restart carbo if needed. This will help my kidneys (the platinum is tough on them) recover. Started round 9 with this today. Planning on next CT on April 14. Is it common to eliminate carboplatin/cisplatin?
My weight has stabilized in mid-160s which is a good weight for me. Still eating everything in sight. Need to be a little more selective, like adding more fruits and veggies, and water – never go by a faucet without getting a glass of water. And increasing exercise. Continuing with acupuncture and chiropractic.
Just had someone I know die from pancreatic cancer, 14 months after diagnosis. He lived longer than the doctor expected.
As others have said, we don’t come with an expiration date. By and large, I am comfortable fighting CC on my terms, with a great support team of family, friends, and the Lake Hospital team. There are miracles all around us, every day. Our job is to find and cherish them.
I’m 63 and was diagnosed in July, 2013. I started chemo within a few weeks, resolving not to go down without a fight. I lost over 30 pounds in seven months before I starting gaining weight. Still less than I started, but it’s a healthy weight for me.
In today’s world of the internet, I’m sure everyone in my family has checked out the survival figures, but like the elephant in the room, no one mentions it. As some have noted, we don’t come with an expiration date. Since I beat the odds getting a rare cancer, I figure I can beat them again by surviving longer than the odds give me.
I’m thankful that my chemo has had few side affects – mostly hearing deterioration and chemo brain. I plan to continue as long as the tumors shrink. ONC has me pegged as palliative care but I’m going to prove her wrong.
I would recommend to your Dad that he keep a private journal. That’s kind of what I use these posts for. No one in my family knows about them – I can say things to my family here that I cannot say to my blood family. It really helps. Anger, fear, and frustration are normal.
Other than that – don’t overlook the power of prayer – yours and others. I’m sure prayer keeps me going through the dark times.
Look at every day as a miracle and a treasure.
Catherine –
I was diagnosed in July, 2013. Initially, tumor in liver was 17 cm. It’s now down to 13 cm. No surgery for me.
As for the numbers game, I am an engineer – numbers are my life. I told people at work that I was lucky enough to “win” the low-odds CC lottery, so I expect to also win the low-odds survival lottery. Someone is keeping the right end of the curve past five years above zero so I figure it might as well be me.
I’d say make your plans for graduation. It might provide incentive for your mom. Medicine is not the only curative power in the universe.
This site is so wonderful. I was diagnosed in July 2013. Still doing chemo since the tumors are responding. I use this site to say the things I can’t tell my family and friends. And the response is overwhelming. And it is open 24/7 so there is no waiting. Frequently someone is on-line even in the middle of the night. It is so powerful knowing that those who are listening really understand you and what you are going through. Welcome to the family, Judith.
I had problems with constipation. Simple solutions suggested by my nurse – magnesium citrate the first time, then sennacot-s (WalMart generic version worked great – took about 3-4 days).
It was a great Christmas. My older son set up a Skype account and we tied her in with video and audio. Even made a replica of her with an iPad for her head in a hoodie, elf hat, sweat pants, gloves, and slippers. All that was missing were the hugs.
There was one surprise. Out of nowhere, someone unexpectedly cared. It was totally out of how I had previously characterized that person. Just goes to show that there are hidden depths to everyone.
The family knows about the CC, just not about this forum.
Question – when do people transition from the Introductions Board to General Discussion?
Merry Christmas to all and to all a good night.
Merry Christmas!
Results from CT scan were great! Tumors continue to decrease in size. Also, alkaline phosphatase has decreased to 127, almost into the normal range – down from over 800 when this began. Doctor was happy and chemo will continue. Will get a check on CA 19-9 in January.
Platelets were too low to take chemo but that’s only a week delay.
Have experienced a new reaction to my cancer – not exactly denial or rejection, but inability to deal with it so it’s ignored (best way I can describe it). Some people see me as a walking dead man so they start to pull away. This has probably affected my wife more than me – I just keep on, but Aimee takes it personally.
Another strange reaction. I’ve been told that I could come across as a victim/martyr because my attitude is positive. I can’t be really sick because I look/sound so healthy.
Do I just know some strange people or are these common reactions?
My daughter has a severe case of crud – her doctor said she is very contagious and should stay far away from me. Bummer at Christmas – first time the family will not be together. But we will Skype to make the best of it. Just another incentive to fight like hell to make sure we have Christmas 2014 (and many more) together.
I haven’t told people that CC has a lousy outlook. My family is fairly internet savvy, plus my nephew is a doctor. I’m sure they have put two and two together but no one mentions the elephant in the room (sorry to mix metaphors).
Thanks for listening and I hope and pray we’re all here next Christmas.
First things first:
Just got a phone call from my doctor (yes, 9:22 at night). She had the results from the CAT scan I had yesterday – the tumors are continuing to shrink! Next chemo is Christmas Eve and then New Year’s Eve and they will be days of rejoicing.I guess joining a discussion forum half negates the privacy label. Maybe isolated is a better word now. I talked with a few coworkers who have cancer. They understand in ways that no one without cancer can. But, I have not told family members I have joined this forum. Maybe because I can say things to you that I can’t to them. That has to change, but one step at a time. And, I have the advantage of being able to take days to word-smith what I write to say what I mean.
I have learned things about myself that I would not have otherwise without CC. From what I have read, this is fairly common.
DukeNukem was a PC game from the early 1990s – first person shooter. Crude by today’s standards, but the name stuck with me.
My humor dealing with CC impresses my co-workers, even though it has gotten darker. I joke that not only hasn’t my oncologist told me not to buy a 2014 calendar, she hasn’t even recommended that I buy one on the installment plan, a quarter at a time. (What I don’t say is that she hasn’t told me it would be sound investment either.) Being engineers, these people automatically translate a double negative into a positive without hesitation. Response from Jim was “You’re sick!” But, that was exactly the response he would have made before CC. He understands that life goes on regardless of speed bumps and pot holes.
Two people who are 3+ year survivors has done wonders for my mind! Thank you for the gift of hope.
My current story began July 3, 2013 (the back story will have to wait). I had been working 8-12 hours a day 5-7 days a week for 10 weeks and had lost 23 pounds with no end in sight. I’m 5′ 10” so 150 pounds was a little light. Primary Care Physician ran some blood tests and scheduled me for a CT scan July 5 with a colonoscopy the following week (my first, even though I am 62). First visit to Oncologist was July 10 (Seidman Cancer Center joint venture between University Hospitals in Cleveland, Ohio and University Hospitals in Lake County). She said it was inoperable, radiation would not work, and if I didn’t start chemo soon, I would be dead in six months. Tri-fecta. CA 19-9 was 636. Alkaline phosphatase was 761. MRCP on July 22. Identified cancer in lymph nodes, lungs, and liver. Liver tumor was 19 cm. Biopsies confirmed cancer in the lymph nodes and liver. I understand that late diagnosis at stage 4 is common.
Started with cisplatin and gemzar July 24 (had a little nausea one day) but changed to carboplatin and gemzar and no more nausea. One week of cis-gem, gem only a week later, then a week off. Had another CT scan September 20. Liver tumor had shrunk to 17 cm. Yesterday’s CA 19-9 was 61 and alk-phos was 157. Completed my sixth round November 13. Had to take last week off, platelets were 77,000. Back up to 199,000 yesterday. Will have next CT scan in mid-December (after round 7). Had ringing in my ears since teens but it has worsened slightly; hearing had also worsened. I can hear, but have problems discerning words from some people in some situations. Not sure if it is the chemo or CC. Small amount of chemo brain and crabbiness from time to time. Initially had problems with constipation but Senokot-S became my best friend (actually the WalMart generic works fine).
Weight is back to 160-165 pounds (lowest was 140 pounds). Very little neuropathy. Platelets are low, 90,000-130,000.
I’m having chiropractics done to alleviate shoulder/neck/lower back pains that existed well before CC. Also having acupuncture for liver. He has me on BHP3 tablets (from Traditional Chinese Medicine) which I take not as often as recommended but are supposed to be formulated to work with chemo.
