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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: 20
Latest Activity: Nov 16

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

what is cancer?

Started by Luara Oct 8. 0 Replies

Here's a good blog on the hallmarks of cancerContinue

Men at risk of Prostate Cancer could in future be identified by Gene Tests

Started by Dr. Terence Meaden. Last reply by Patricia Sep 16. 3 Replies

Ex Nature Genetics... Genetic tests could identify men having up to 100 genes that together can raise their risk of prostate cancer sixfold. One per cent of men carry a combination of the genes that…Continue

Tags: Prostate Cancer, Genes

A Personal Cancer Blog

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Comment by James M. Martin on June 28, 2014 at 4:30pm
No, Sentient, I have not had Gleevec. As for the Canadian, I would think there's little problem getting the drug shipped back to you in the U.S. once you have a prescription on file with one of the more reputable Canadian mail order drug distributors. My doc told me about another drug that counters the effects of the anemia, but he said I couldn't afford it. In any case, he says new drugs for CLL are coming along all the time. Apparently there is even a pill that can be taken. Or so he says. And BTW, the only cure I could have now would be stem cell transplant and he says I am too old to survive the process.
Comment by Daniel W on June 28, 2014 at 4:03pm

James, I remembered you talking about your CLL, and I'm glad you joined.  

My dad was on Ritoxin for his lymphoma.  He did pretty well for a couple of years, but he was in his mid 80s.  Then his prostate cancer and bladder cancer added to the mix.  Still, he was 91 when he died.

I wondered if you were on Gleevec for CLL.  That is what I'm on for GIST.  It also treats CLL but the insurance companies don't like the cost - for CLL,  I think it's about $120,000 a year.  In Canada it costs about 10% that  - very roughly.  I thought about offering to my health plan, fly me to Toronto, put me up in a nice hotel, give me a week off for sick leave, and arrange for a Canadian oncologist to write me an Rx for a Canadian pharmacy.  For my dose of Gleevec, the USA cost is about $88,000 a year, while the Canadian generic is in the range of $10,000 a year.  I could save the health plan beaucoup moola.  But it might not be legal for a US plan to make use of a Canadian Rx.

Comment by James M. Martin on June 28, 2014 at 3:24pm
Chronic lymphocytic leukemia for the past 13 years. Two chemos, the first with Fludarabine and Cytoxin; the second, Ritoxin and some other drug. (I try to not keep track of detail too much when it comes to my dis-ease.) The only side effect is anemia, but then at 71 I probably am supposed to tire easily anyway. When diagnosed, I was told that the bad news was I had CLL. The good news was, I probably would die of natural causes. I'd drink to that if I hadn't quit almost 20 years ago.
Comment by Plinius on June 24, 2014 at 7:35am

I think of you Trixie! Tell us your story as often as you want, perhaps we can come up with something that eases your load.

Comment by Joan Denoo on June 24, 2014 at 12:39am

Oh! dear Trixie, your is bad news, indeed! I am very sorry to learn that your husband and friends don't seem to "get it"! Having a 10 year old son with severe autism makes the need for health vitality important. Yes, he does need you and with your fatigue and radical medical surgery, there is just not the energy one needs to meet all your challenges. Being 35 does not bring comfort, knowing the unpredictable nature of this dread disease.

I am 78 years old and I have two cousins who had breast cancer. Thankfully, we all survived the treatment and have clear follow-up exams.

Before getting diagnosed, one feels so invulnerable, but the mere mention of the word puts everything into a new frame.  

One day at a time, wake up grateful to have another sunrise, and go to sleep thankful for one more day. I don't know how else to face this. Each moment is precious, especially in your situation. There are so many feeling that emerge: fear, anger, worry, helplessness, loneliness and these seem to creep in at unexpected moment. Joy, pleasure, gratitude, solace, and equanimity take deliberate effort. 

Early on, I made up my mind that cancer does not define me and I intended to be happy as much as possible. When sadness did invade, I welcomed it as a sign that I was not being Pollyannish about this. I faced a life threatening disease. 

Our age difference makes a big in contrast in how we experience cancer. In another month my sixth great-grandchild is due. I feel sad that I may not be around too much longer to see them grow and develop. Your encounter with cancer comes at a stage of your son's development that means there is more at stake. I have no answer to offer, and not even an idea that might reassure you. I can tell you that I hear your loneliness, and so do the others who read your comment. You are not alone. Even though we are virtual friends, we are steadfast and able to listen to whatever you want to express. We are here for you.

This is a corny gesture, but I just want to send you a little beauty to brighten your day. Please forgive the unoriginal thought. 

Comment by Trixie on June 24, 2014 at 12:00am

Thanks for the welcome!  It has been emotional.  And even though I love my husband and friends, it just doesn't feel like the get it.  That feeling...  the loneliness in the disease.  I fight for my baby.  He is 10 years old and severely autistic (non-verbal with no communication).  And, he needs ME.  So, I fight and fight.  But, I'm so tired (and I just started).  I was still barely 34 when I found the lump.  On my 35th birthday, I had all my girlfriend's feel it (about a dozen girls) and only 1 said the would have it checked out.  Well, I had made my appointment anyways, and I kept being told that it most likely is nothing. Then we got the call from the surgeon.  Comedocarcinoma with necrosis 6cm (grew in 3 months).  By the time my bilateral mastectomy was done, a new tumor formed.  A completely different cancer.  HER2 1.4 cm and already invaded my lymph nodes (grew in 3 weeks).  I'm just so overwhelmed.  No family history of any cancer at any time.  I did everything right.  Never smoked, done drugs, or even drink alcohol (and I was in the Navy).  I had my son at 25 (before 35) and breastfed.  In the end it didn't matter.  I got Breast Cancer.  And, I'm falling apart.  Everything is so rushed.  They got me in a clinical trial, but I will most not get the new trial chemo.  I should start in about 2-3 weeks, and the entire trial lasts about 1.5 years....  then radiation and Tomaxifen for 5 years...  then a bilateral salpingo-oophorectomy....  it seems like a decade of treatment.  I'm not sure how someone is suppose to stay sane.

Comment by Joan Denoo on June 23, 2014 at 11:10pm

I forgot to mention my surgical team who worked miracles. 

Be sure to read Sentient's cancer blog. He gives in so many ways, always a gentle and insightful one to maintain perspective. His "14 months and counting" tell the truth about his journey, no holds barred. No pretenses. No phony platitudes. 

My thoughts are with you and welcome to the Atheist Nexus Cancer group. 

Comment by Joan Denoo on June 23, 2014 at 11:00pm

Trixie, I know what you mean, several of us had diagnoses of cancer about a year and a half ago, and Sentient Biped started this group for support. The support of people who had been through the processes joined in to walk us through the difficult experiences, always reminding us that they survived the treatments and are alive to tell their stories. 

Having good professionals helping you make decisions provides incredible comfort, and those who have had the diagnosis and treatment provide emotional support.

I started thinking in terms of teams. My medical team gave me information and research to help make decisions, and provided the treatments that had the highest probability of killing the cancer cells. My family team gathered around me with great devotion and love, my great-grandchildren team kept me company when I wanted it and made me laugh, my neighbors team dropped off notes or little bites of things they thought might taste good (nothing did), my professional chefs team helped concoct things that had nourishment and would stay inside me instead of flushing through, my hair care team help make me feel acceptable as all the hair on my body fell off, my pharmacy team helped me find things that helped me not feel so icky, any of course, my Atheist Nexus team was available night and day to encourage me and inspire me. As the year wore on, as my chemo team reassured me, my radiation team supplied me with salves and ointments, as each protocol was completed, and as I began to feel human again, I felt I had faced the challenge the very best ways possible and now am almost fully recovered. I could only do a few things each day, and slowly my strength came back.

Each one of us had different ways of coping and we can offer ideas that you can try. If they help, great; if not, well we are here to hear your joys and fears, your hopes and disappointments, your determination and your hopelessness. One day at a time, one minute at a time, just to keep a small, wee spark of hope alive, you, too, will make your journey doing the best you can. We make this passage with you. You are not alone.   

Comment by booklover on June 23, 2014 at 10:43pm
Hi Trixie! I'm sorry about your cancer! I haven't had cancer, but I have good friends here that I care about! I'm Mindy, and everyone here is wonderful! I'm glad you found this group that Daniel started! Keep posting! We won't pray for you, but we sure wii listen and give moral support!
Comment by Daniel W on June 23, 2014 at 10:42pm

Hi Trixie,

This group was created for people like you and me and the others here.

You are right, cancer hits hard and fast.  Lots of time getting poked and prodded and scanned and injected and other stuff.

There is some experience here.  We want to help.

 

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