Barb73
-
Posts
1,549 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by Barb73
-
-
Barbb,
I am just getting around to reading your post. I think you are amazing. The very fact that you have come here to post, think of others, and to reach out is so comforting.
Recently, March 25, 2010, Bill died and the only thing that held me together - out of necessity - was the fact that Social Security had me dead, as well.
That promulgated a slew of mistakes reaching the heights of Medicare.
There was little time to think, cry, or vent. The problem had to be solved.
Spending 4 hours, physically waiting there, at Social Security fixed the problem, but it took weeks for the entire mess to be straightened. Part of it is still in flux.
In a sense, I thought to myself, "No matter what happens, life moves on and could care less where one is in the scheme of things."
Barbara
-
Greg,
I have been reading your postings about the use of an assay for patients to determine more effective treatments, and in the long run, to lower costs.
Simply put, why is that you think this is not being done on a routine basis? After all, as you pointed out, it would be advantageous in a monetary sense.
My take is that patients might feel that they would not be given enough options for their treatments.
The perception of lack of effective treatments on the part of those not receiving more "attempts" by their oncologists might put the stress on the research/medical community.
Barbara
-
Hello Keli,
I read your posting here and the one at GRACE. I send you a warm welcome.
Your concerns about your diagnosis may be very similar to my husband, Bill, who was treated for more than five years, and had a productive, upbeat, and very near-normal life.
Responding to you in a comparison is to let you know that whatever path your treatment might take, there is hope.
My husband was 74 when he was diagnosed, and the verdict was that he was inoperable. That might not be your case as some doctor might see otherwise for you.
Bill had concurrent radiation and chemo. That meant he had radiation every day (Mon.-Fri.) for 7 weeks, and chemotherapy once a week for 7 weeks.
The shrinkage in his tumor was over 50% and he was encouraged to go for many more regimens over the years in order to lengthen his survivorship. He told me that he had no regrets about anything, so I took that to mean he was OK with it all.
Today, there are so many more options for lung cancer diagnoses. For instance, they can test tumors for response or rejection to treatments - something to look into for a better outcome.
There are treatments, like Tarceva, which has now been approved for use in advanced cases. So, Keli, things are changing all the time.
We lived with hope and to this day, I still have that hope for others with lung cancer. Bill brainwashed me into "not giving up."
Barbara
-
Kasey,
What could I say that would be anything better than
YIPPEEEEEE WHAHOOOOOO
...nothing I am sure. You are so wished congratulations on your wonderful outcome.
God love you always,
Your devoted fan,
Barbara
-
Hi Wayne,
Welcome to a wonderful support group. I am sure that you will find this to be an "oasis" which can provide you with support, caring, and lots of insights.
Barbara
-
......and Nick, that is one beautiful baby.
Barbara
-
Judy,
Glad to know that you were proactive in setting up an appointment.
I am hoping and praying that you find results. Keep your focus on finding answers. No one should need to sit back and wait while in pain.
Keeping you in my thoughts, Judy.
Let us know how it all transpires?
Barbara
-
Hi Myrtle,
Yes, cancer is a complicated disease. Of that, I was apprised throughout five years of my husband's journey with lung cancer.
Keeping our heads and not going off half-crazed with the diagnosis helped us a great deal. Bill's journey lasted five years. That was with a very good quality of life.
Adding nutrition, keeping active, and coming HERE to vent, seek support and hopefully, to give to others filled the rest of the recipe.
Your humor is a signal of intent to keep perspective through this. That can only enhance your mental and emotional grip on this.
I read every single word of your blog. There won't be any preaching by me, but . . .
Wishing you much success in your treatments,
Barbara
-
The first throws of the cancer diagnosis are very scary and no one ever is prepared for that jolt.
Having a support system, as Judy has suggested, is crucial. It can offer you a less-alone feeling, and give you a vent for your desperation.
Through all of what you have been through, there are many here who have been either in that same place, or similar. I know that I have. Crying was part of my daily routine - many times. No one is superwoman but just getting as much emotional help that is necessary will help you a lot.
I am so glad that you came here. When my husband was first diagnosed, my heart was heavy and I didn't know what to do - where to turn.
A gentleman who had lung cancer invited me to join an online support group, and it has seen me through the roller coaster ride that cancer can often be.
Barbara
-
He is soooo cute.
Barbara
-
Dearest Judy,
It does not matter how old I am to qualify as your mother. I am 75 and 3 months, but motherhood does not matter as to age, dear Judy. It matters that we connect.
I do care, and that is whether I am sister, friend, or mother. In our lives, we will know many roles.
I hope that you will be comforted in that I know you through your posts, think about what you say, and care about you very much.
Love,
Barbars
-
(((Dear Judy))),
I am so sorry that you experienced these painful spasms. Hopefully, the muscle relaxer helped with that. Of course, your wonderful husband came to your side with the warming pads to help. What a loving and caring man he is.
Finding answers with this disease is not always easy nor apparent. Over the years, we (Bill and I) sought out answers, and the one thing that stands out is that it may take more than one opinion. We enlisted the help of the whole team who were working with us. Coming here may give you some clues, as well. There are times when frustration with the situation can motivate us to push harder for the source of relief.
Once, the radiologist helped greatly when Bill mentioned a very slight and intermittent muscle spasm in his back. The doctor asked for a CT scan of his brain. The cause was a lone, small met.
You have every right to feel down with this painful episode. It's difficult dealing, at times, and sometimes more so than at others.
Your positive attitude has been your mainstay. Not all things that hit us are as easily braved through. But, one of your doctors may know what the problem is, and clear the way to solving it.
I just wanted you to know that I am up at this wee hour in the morning, and feel your distress in my heart. You are wished and hoped a comfort.
As an aside, I get painful muscle spasms in my legs and more so, recently. You have given me the impetus to seek out just why that is occurring, and not just accept it.
Barbara
-
Judy,
I just saw this posting today, which is still before your next testing.
As I read your post, I can see that you are very much in touch/reflective. That is a blessing to have such insight into your own thoughts.
Bill and I used to talk a lot about things, including the next treatment, scan times, or even whether, or not there would be any side effects. In Bill's journey, Alimta was a favorite (if we could call any chemo "that"). It held him stable for a year or more.
However, is doubtful that I would have been able to get through all of what ran through my mind when going to the treatments with Bill without this great place to come and unhinge.
I like to think of it as an oasis filled with people of wisdom, experience, and just plain caring.
Thank you, Judy, for sharing your thoughts.
Love,
Barbara
-
Heidi, I have your Dad on my list for prayers.
May everything continue to be OK.
Barbara
-
Kimberly,
No advice here, but do want you to know that prayers are going your way.
Just you being there for your Mom and advocating for her will help her greatly. I know the frustration that comes with any misdiagnosis along the way. Importantly, your Mom has you there as a staunch ally, and a steadfast element in the journey to help keep on top of things.
Regarding Lyrica, it can take a while to set in for relief of discomfort. It has been known to work over time.
Good thoughts and prayers for you, Mom and family,
Barbara
-
"These are the most difficult days we have ever endured in our lives and just taking one step at a time is heart wrenching."
Yes, Michele, they are but we will survive. You and I are among the legions of those who have lost their beloveds.
Our lives will reflect that love with which we were so blessed - and make no mistake, all of us who have lost our spouse know the pain, but also know that we are better for having known that love.
Barbara
-
The one thing that is the hardest to bear, besides being without Bill, is the newness of doing everything on my own. I have not been alone since I left home (Mom and Dad) at the age of twenty.
It's a bit scary, Michele. Every day brings new events that, in the process of tying up loose ends, also brings challenges.
The counselor, whose choice of words were so matter-of-fact in their description of where you and I find ourselves, reminds me of something.
Rose Kennedy, whose life was full of loss, said that time does not heal. What happens, she explained, was that, with time, scar tissue covers the wounds and they don't hurt as much.
But, they are always there.
I will never be "over" Bill. How could I, Michele? I knew him practically all of my life. He was my mainstay, my best friend, and there is no replacing that with anything.
On the other hand, would I have chosen not to have loved him, and never known this loss? I would do it all over again, including the months of watching him slowly decrease in presence. We will survive this, Michele. We are fortunate in the sorrow because we loved somebody that much. It is the price for having been so blessed with love, but that love can see us through and strengthen us.
Tears every day are in my life now, but as time moves forward, Bill will be always here in memory, spirit, and in my heart. I think of him as "being with me."
I keep you in my thoughts, Michele, as you move toward a new job. It will help give you purpose. You are wished much success with that.
If you need a shoulder, I am here for you.
Barbara
-
a little bit of "blame game" towards the end.
Oh, you are so right. But, as you have indicated, we grab onto any help we can.
I hope I can help as we go along this road. Today, I had my ultrasound (carotids and aneurysm scanned). Both are not bad, and the abdominal is the same size it was.
However, there is a problem with the BP. One arm, the one always tested, was fine, but the right arm was not good.
Back to the drawing board. It seems that the left arm may not be receiving the blood supply due to a blockage - thus, the low and good readings. The arm that has never been tested for BP is showing what the blood pressure is in actuality and that is NOT good - 180 over 100.
I have been informed as of today's visit to vascular doctor - that after seeing my GP about the BP, I need to get an MRI angioplasty.
Sheesh, and here I thought I could delve into repairing some problems around the house. Have already accomplished curtains, floors, and regular laundry catch-up. It has kept me from falling apart too often.
Oh well......
Barbara
-
Katie,
You and Rick have my prayers. Pretty much what I do now is pray.
My thoughts are with you guys for a good outcome to all the testing.
I am there with you - spiritually.
Love,
Barbara
-
http://www.thestarphoenix.com/business/ ... story.html
ARTICLE:
. . . . . . . . .
Charles Florsheim is careful about his health. When an elevated routine blood test and a conservative physician diagnosed him with prostate cancer in 2008, he had surgery to have it removed. It had been caught early and treated successfully, and Flosheim moved on with his life.
In May 2009, though, a routine pre-surgery X-ray of his chest showed some suspicious lesions in his lungs. It was lung cancer.
Despite never smoking, Cantey Hanger partner Florsheim had developed a cancer that is often caught when it already has spread through a person’s body. His cancer was caught early, but the treatment was grueling.
Florsheim knows that he was lucky, and he’s taking advantage of his status as a survivor — lung cancer is the No. 1 cause of cancer death in men and women each year — to help efforts to research the disease. He became a consumer reviewer for the Lung Cancer Research Program, a federal initiative administered by the Department of Defense that just debuted for the 2009 fiscal year.
“If I could prevent one person from going through what I went through, whatever I’m doing is worth it,” Florsheim said.
Florsheim’s lung cancer was removed in surgery, which required a long and painful recovery, he said. His family — including his wife Ann, his daughter Claire, and son Charlie — were a huge help, he said, as were his colleagues at Cantey Hanger LLP, where Florsheim is partner and vice chair for the business law section. His son also is an attorney at the firm.
It was Claire who started raising money in Florsheim’s honor and coordinating a team to participate in the local LUNGevity Foundation fund-raising walk. Florsheim went to the walk and met people with the organization, which was started in Chicago by survivors who wanted to raise money for research.
“I said, ‘Keep me in mind if there’s something I can do, really do. Not just walk, but really do something,’” he said.
Around that time, the LUNGevity Foundation was approached by the Defense Department to put out the word that the new lung cancer program, part of the Congressionally Directed Medical Research Programs, was looking for lay persons to take part in a panel that would allocate funds for research, said Beth Ida Stern, executive director of LUNGevity.
The foundation put out contact materials on its community forums, Stern said, and people could get letters of support from the organization to send in with their application packets.
“I’m not sure how many people we had apply,” she said. “We had a lot of people apply.”
Florsheim was chosen to be a part of the panel, and he said he believes his military background (he completed four years of service in the Army Judge Advocate General’s Corp, including a year in Korea) and background as an attorney were helpful attributes.
In February, he spent two days in Washington, D.C., with physicians and researchers who also were a part of the panel. The goal was to award a $20 million grant to build a tissue repository where tissue samples from patients could be stored and studied to learn more about lung cancer, including why people like Florsheim, who are not smokers, develop the disease.
His experience as a lung cancer patient meant he had a perspective on the disease that physicians and researchers don’t often have themselves, Florsheim said.
“They listened to me,” Florsheim said. “I was an active participant and had the same sort of vote as everyone else on the panel, like physicians.”
Sterns said the approach, which is used for all CDMRP research initiatives, lets patients have a voice in funding decisions that are “usually done behind closed doors.”
“This is probably really the way that money should be given out, is with consumer involvement,” she said. “This was really very forward thinking.”
Gail Whitehead, public affairs manager for CDMRP, said these integration panels can identify gaps in research and can address needs that might not otherwise be tackled.
“We use consumers on all of our panels, and we have found that those nominated by organizations that know them well tend to nominate very talented people,” she said. “Because they have experience in their part disease, they bring a real voice of urgency and concern to the reviews of these particular proposals.”
It’s up to Congress to decide whether to continue funding the lung cancer program, and how much to put into it, but Dr. Clint Park, a radiation oncologist at Texas Oncology-Fort Worth Eighth Avenue, said much of the recent research done about lung cancer focuses on treatments, like new radiation techniques for patients who can’t undergo surgery or new chemotherapy or biologic agents.
The great majority of lung cancers are caused by smoking or other environmental factors, Park said, and the disease often isn’t diagnosed until it’s advanced because the symptoms often don’t appear until it’s advanced.
“The lung does not have pain fiber, so lung cancer does not hurt,” he said.
Early lung cancer is frequently found incidentally — like Florsheim’s — but the best thing to cut down on lung cancers is to cut out smoking, he said.
“If you don’t have the lung cancer, then we don’t have to treat it,” he said.
. . . . . . . . .
(Fort Worth Business Press, By Elizabeth Bassett, April 12, 2010)
Disclaimer:
The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.
-
Janette,
I found this article to be very interesting. My thoughts are that it can do no harm to concentrate on smokers.
Having this test available is one avenue, and in that way, they may be caught earlier. Even learning of this testing of the cells may give more smokers in the population the thought that they should be more aware.
As for those medical professionals who keep the hope of a cure, or even early detection (leading to more cures), my hat is off to them. They carry the banner of not giving into same-old, same-old thinking.
We need those researchers who have a vision, and keep at it
Barbara
-
http://www.asbestos.com/news/2010/04/12 ... py-method/
ARTICLE:
. . . . . . . . .
In a clinical trial being conducted at Brigham and Women’s Hospital, the effectiveness and correct dosage of a two-drug chemotherapy method is being tested on mesothelioma patients who have undergone surgery.
Mesothelioma is a rare form of cancer that most commonly develops in the lining of the lungs. The primary cause of mesothelioma is exposure to asbestos and symptoms can take as long as 20 to 50 years to arise after initial exposure. For this reason, people often unknowingly develop the cancer and are diagnosed when it has already reached the advanced stages of development.
A total of 36 malignant mesothelioma patients are being enrolled for the study. One of the chemotherapy drugs being used is cisplatin, which has become a recognized treatment option for mesothelioma. The clinical trial will also be testing the chemotherapy drug gemcitabine to see if the addition of the drug can be accomplished safely and can improve treatment.
Dr. David Sugarbaker, chief of the Division of Thoracic Surgery at Brigham and Women’s Hospital, is the lead investigator for the trial. Much of his research has been centered on malignant pleural mesothelioma and he is most noted for his multi-modal approach to combating the cancer.
Current treatment options for this cancer are limited and researchers are still looking for a cure. Most methods of treatment offered to patients are palliative and do not attempt to cure the cancer. Nonetheless, clinical trials like the one being carried out at Brigham and Women’s Hospital are providing answers for researchers looking for a cure.
. . . . . . . . .
(Asbestos.com, Asbestos & Mesothelioma News, April 12, 2010)
Disclaimer:
The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.
-
Dear Judy,
Both Bill and I smoked when we were younger, and on into our older years.
Bill was in the Marines at age 17. While there, and having reached age 19, the Korean Conflict occurred.
It was while he was there in Korea that the government threw cigarettes out of planes to the soldiers.
At first, he "traded" them for chocolate. When no one traded anymore, he began smoking them.
As for me, I thought I was sophisticated
, and why not? After all, the doctors were on TV attesting to the fact that they preferred such and such a brand.Guilt didn't play a part in my thinking because there has been enough "shared" guilt by professionals to go around. Besides, we cannot change past scenarios. We can only do better for ourselves where we stand presently.
Glad you fired that doctor. He wouldn't have done you any good with that attitude of his. We need positive, encouraging people in our journey.
For the record, they have come to realize that there are many diseases which may have been caused by smoking and/or other lifestyle choices. Diabetes has been connected with weight.
Heart disease is a big one. I have heart disease and no doctor ever asked me if I smoked in the present or the past.
Go figure.BTW, it's good to vent. It keeps things from festering.
Thanks for being a member here, Judy.
-
Lynnie,
I am just catching up on reading the postings, and saw yours about your beloved Dad.
Your telling about what a wonderful, loving man he was touched me. I felt I was reading about someone I knew and probably because Bill was very like that.
It's a Celebration of Life because you have reminded us that it is not about the cancer. Bill and your Dad bore with a disease with which they tried to live, and did so with dignity.
May all of your beautiful memories of your Dad eventually fill your future days with comfort.
May you have peace. We will always miss these special gentlemen (husbands, fathers, and/or grandfathers) but it was an honor to have had them in our lives.
Barbara
, and why not? After all, the doctors were on TV attesting to the fact that they preferred such and such a brand.
Go figure.
Making Personalized Treatment for LC a Reality in Europe
in LUNG CANCER IN THE NEWS
Posted
http://www.physorg.com/news191834509.html
ARTICLE:
. . . . . . . . .
The recent approval of Europe's first personalized treatment for lung cancer heralds the arrival of a new era for lung cancer treatment that will demand significant changes to the way cancer specialists and other hospital doctors work, a leading expert said today at the 2nd European Lung Cancer Conference in Geneva, Switzerland.
Prof Robert Pirker of the Medical University of Vienna said that personalized therapy, in which treatment is based on the characteristics of an individual patient's tumor, promised to improve outcomes for patients, as well as being more cost-effective and less toxic than existing treatments.
"Recently, oral treatment with the targeted drug gefitinib was shown to be superior with regard to progression-free survival compared to treatment with up to six cycles of first-line chemotherapy in patients with advanced non-small-cell lung cancer (NSCLC) who have mutations in their tumors that activate a cell-surface molecule called epidermal growth factor receptor (EGFR)," Prof Pirker said.
This finding led to the approval of this drug in Europe in 2009 --but only for treating patients whose tumors carry these mutations.
"Before we can offer patients gefitinib, the presence of these mutations in tumor cells has to be clearly demonstrated," he explained.
In order to achieve this, doctors must perform a molecular analysis of tumor material from biopsies. "This will benefit patients, but it changes the whole diagnostic workup and requires some change in the thinking of oncologists, including closer co-operation between the various disciplines: interventional pulmonologists, pathologists, biologists, oncologists," he said.
Scientists around the globe are currently probing the genetics of cancers with the aim of identifying new targets for personalized treatment. These projects, such as the International Cancer Genome Consortium, mean that testing for mutations in tumors will become routine.
Eventually, tissue sampling to allow this kind of mutation testing will become standard in Europe, Prof Pirker said. But currently, there are obstacles preventing it from becoming more widespread.
"The obstacles include the fact that too few doctors trained in invasive tumor sampling, that mutation analysis not yet readily available, and that there are reimbursement issues which might vary from country to country," he said.
If these obstacles can be overcome, and more doctors are trained in taking lung cancer biopsies, more patients will be able to be treated with oral gefitinib, and the discovery of other new therapeutic targets will be accelerated," he said.
Provided by European Society for Medical Oncology
. . . . . . . . .
(PYSORG.COM, news, Medicine/Health/Cancer, April 30, 2010)
Disclaimer:
The information contained in these articles may or may not be in agreement with my own opinions. They are not being posted with the intention of being medical advice of any kind.