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Cancer

If you have cancer.

If you had cancer.

If you know someone with cancer.

If you want to talk about cancer.

We won't pray.  We won't blame gods.  We won't give credit to gods.  

We face the diagnosis and know, it is what it is.  

To the extent that we can, we will define our own course.

Members: 23
Latest Activity: Jan 5

Cancer

Cancer changes lives.

We have to deal with medical profession.

We have to deal with medications.

We have to deal with new discomfort and pain.

We have to create dignity, where there is indignity.

We have to deal with family members, friends, coworkers, and strangers, in a changed way.

We resolve to go forward with strength, resilience, purpose, pride, and integrity.

We define ourselves. Cancer does not define us.

Discussion Forum

Metastasis Visualized

Started by Ruth Anthony-Gardner. Last reply by Daniel W Jun 27, 2016. 3 Replies

This video makes it easier to grasp how metastasis occurs.Continue

Tags: metastasis, cancer spread

Sean Parker to Donate $250,000,000 to Fight Cancer

Started by John Jubinsky. Last reply by Michael Penn Apr 13, 2016. 1 Reply

Billionaire Sean Parker who was the first president of Facebook and a co-founder of Napster will donate $250,000,000 to fund immunotherapy research to fight cancer. This type of therapy fights cancer…Continue

New Hope for Hard-to-Treat Cancers

Started by Qiana-Maieev. Last reply by Ruth Anthony-Gardner Apr 7, 2016. 2 Replies

Ancient Algae Offer New Hope for Hard-to-Treat CancersPosted: 06 Apr 2016 01:57 PM PDTIn one of the oldest life…Continue

A Personal Cancer Blog

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Comment by Joan Denoo on February 18, 2016 at 7:44pm

Daniel, may I ask how you are going to manage the purchases in Canada? 

My GP and my oncologist just told me I am very anemic, in spite of the fact I take a high-quality iron pill that my nutritionist recommended, twice a day instead of once a day. We discussed my wanting to start making vegetarian meals; they both suggested I delay that until we find out what is going on. I have a string of doctor's appointments this spring that I missed this winter because the driving conditions were so bad. My calendar now includes my neurologist, cardiologist, and physical therapist. 

My only presenting complaint to each of them was fatigue, foggy thinking, and forgetfulness. I am still getting lost when I drive so I decided to give up driving, even if it is just to the grocery store in my neighborhood in Spokane. I don't drive at all in the country; there are too many country roads on which to get lost. My GPS on my car and my phone passed inspection by Larry. I don't know if it is being 80 or being a cancer survivor, but the 80s are not at all like turning 70.

The good news, I am triumphal and content with my new living arrangements. I move this Saturday! I selected a few (haha) books to take there. We will be moving bookcases into my bedroom and just about squeeze out the bed, chest of drawers, and dresser! As long as I have my books, recliner, and space for a fluffy rug for Dominic, I am joyous!

Comment by Daniel W on December 24, 2015 at 7:51am
Thank you Ruth and Terry for your encouraging words.
One correction. Ruth, my health plan IS currently paying for the gleevec. I dont know what will happen in March when the 3 years mark arrives. If they dont, pay for it, my plan is to buy it in Canada, where the cost is 90% less than in the USA. I did have to pay cash for the visit to OHSU. My health plan will not cover that.
Comment by Ruth Anthony-Gardner on December 23, 2015 at 8:34pm

Thanks for your update, Daniel. Health plans ... don't get me started. You were right to get outside advice, and it's super good you can afford to continue gleevec on your own. Keep those little buggers asleep.

Comment by Dr. Terence Meaden on December 23, 2015 at 12:14pm

Daniel, I don't know how, but I missed your 12 December message or I would have replied at once. Thank you for updating us. We are all with you. Keep us in touch with events. A Happy New Year to you and all. 

Comment by Daniel W on December 23, 2015 at 8:38am
Thanks for your support, all. It really does make a huge difference.

Going outside my health plan was logistically challenging, even though I am very fortunate I can pay out of pocket. The hoops to jump through are challenging. But glad I did.

My health plan oncologist told me I would take the cancer treatment, gleevec, 3 years, that's it. I really didnt feel right with that. The OHSU oncologist stated the gleevec keeps the cancer cells asleep, like weed seeds in a lawn. I actually knew that. Stop gleevec. and chance of recurrence is 95% in the next 2 years. Continue gleevec, and it's 5%.

He also had me check iron level. Turned out to be extremely low. Will be arranging for an infusion of iron soon. I hope that helps with the all pervasive fatigue, fog, and aches. If not, it's OK. But at least Im trying.

I wasnt going to take all of my accumulated vacation. They are terribly short staffed. But I cant handle it any more, so I put in vacation requsts amounting to almost half of my remaining time.

Oh well. Again, thanks for the supportive comments.

You all have challenges too. And you handle them very well, an example for me!

Joan, there may be a contingent of one or 2 or 3 at the reason rally. We'll see. Might all be able to meet at a single table in a restaurant, assuming it is more than just me! I equally want to go to the Smithsonian and botanical garden.
Comment by Michael Penn on December 23, 2015 at 6:27am

That's good news, Daniel. Most of you in this forum are so much more brave than me. My only cancer was basil cell and that's a pretty easy one.

Comment by Joan Denoo on December 23, 2015 at 5:25am

Daniel, I just now read your Dec. 12 post. I am so sorry I missed it and found it only by accident. Thankfully, your self-advocacy worked and you know there are "no awakening gremlins". I am sorry I didn't find your message on the day you sent it.

Your plans to go to OHSU makes good sense. With well trained doctors and staff, modern equipment and treatments, and you being a good advocate for yourself, creates a good team working with you.   

So! You are going to the Reason Rally. and Washington D.C.! That will be a treat. Hopefully, A/ will have a get-together.

I am lazy. I spend many hours just doing what pleases me, and that includes naps. It isn't too much longer until your retirement and you can do what you want.

OHSU

Comment by Plinius on December 23, 2015 at 5:20am

Good news Daniel! Congrats! 

Comment by Daniel W on December 23, 2015 at 2:56am
Well, here is follow upmon the endoscopy - no awakening gremlins. So that's good. The referral also resulted in some helpful advice, so that was worth doing. Peace and good feelings everyone!
Comment by Daniel W on December 12, 2015 at 11:37am

After long absence on here, here is my cancer update.  Just putting it here because I don't have anywhere else to put it.

My recent scan showed a vague mass in the inside of the stomach - in my case, what remains of the stomach since most was removed 3 years ago.  The radiologist reported that this was same location of a mass that they failed to report at the scan 6 months ago, but different appearence.  It's possible this is just retained food, or even a pill since I have some large, hard pills in my regimen.  They recommended wait 6 months and repeat the scan.  I responded by stating I wanted an endoscopy- put a fiberoptic probe into the stomach to see  if there is something there or not.  The patient has to be their own advocate.  They scheduled it, in 2 weeks.  I can ask if this is humane - tell someone they might have metastatic cancer, then they need to wait two weeks to maybe know or not - but that's better than waiting 6 months.

I also decided to go on my own to OHSU, which happens to be a sarcoma center of excellence, and where my treatment was discovered and developed.  They seen hundreds of patients with this rare disease.   My health plan left me hanging 2 months to print out my records to send to OHSU - which just takes printing them off from the computer - and the OHSU said they can do that electronically after all, with my verbal approval.  So, I have an appointment there in a week.  I have to self-pay, but it's only about $500, which in the scheme of things I can manage and very fortunate that I can. 

So that's the update.  Unknowns, frusttration with the health plan, their maddening and inhumane slowness, and the lession that we have to be our own advocates even when we feel tired, stressed, and worn down.

I hope everyone is well and stays that way for the long term.

Even if my cancer is now metastatic - which it may not be - or might be - there are more treatments - which also have more toxicities.  I'm very fortunate to have the where-with-all to have treatment, but kind of down at the same time.

 

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