Clinical Trials

CureForward

Cancer is a complicated disease and no two patients with the same cancer are treated alike. Many patients have a pre-existing disease, like diabetes or high blood pressure which can make it harder to treat the cancer. In some cases chemotherapy raises a patient’s blood sugar and if that patient has diabetes it can be a problem. There are also hundreds of different types of cancer cells which mutate. The good news is, there is constant research being done. As soon as a new drug shows promise of working it goes on to become a clinical trial and for some patients, they might have the opportunity to try it.

Not all hospitals have access to these trials so the patient has to go to the hospital (a teaching hospital) for treatment. Since there are many hospitals around the country doing research who offer clinical trials, its hard for a doctor to know which ones their patient might be a good candidate for. And patients and their caregivers have no idea where to start looking. So where can they find help, the quickest most efficient way possible?

An organization called Cure Forward, launched earlier this year who matches up patients with clinical trials. The matching services is free for patients to participate in, however the cost associated with participating in a trial are still dependent on a variety of factors. So patients can use Cure Forward’s platform for free and accept a trial invitation from a researcher for free, but the cost associated with participating in that trial are not covered by Cure Forward’s platform. If the patient is accepted to participate, the hospital pays the fee. If you are interested, you can read more about Cure Forward here.

Be well and stay informed,

Inge

*** Full disclosure: A representative from this organization sent me an email and asked if I would share their website with you. I am not being paid to endorse them and I checked them out to make sure they are legit. They are.

We Get By With a Little Help From Our Friends

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The main reason I volunteer at a cancer  center is because I want to share my story and give patients a message of hope and faith (not in the religious sense… unless they are religious). I am working on being a better listener because several patients recently confided in me that they do not feel like their doctors are “hearing” them, which makes them feel like, “their thoughts and feelings don’t matter.”

I am lucky that my doctors at least “act” like they are listening to me when I see them (I can’t say for sure though, since I can’t read their thoughts. They could be thinking “oh boy, here comes that nutcase” while they nod and smile at me). But that’s beside the point I want to make here.

After hearing their concerns, I decided to make sure I “hear” them and either give my opinion or just be there to listen. The other day two men (who do not know each other); one who has cancer for two years and another whose family member has cancer, cried in my presence. This happened within thirty minutes of each other, in different places. Both men told me they felt overwhelmed by their situation; their eyes welling up with tears as they spoke. I asked each one, “You have every right to feel overwhelmed. Have you had a good cry lately? Crying is a good way to release stress and toxins.”

Within seconds each of the men’s tears flowed down their cheeks. It wasn’t what Oprah calls the “ugly cry” but it seemed to help. I didn’t say this to them, but it was like they thought they needed permission to cry and express grief. So many men still believe they have to be strong no matter what is happening in their life, but holding in emotions is not good for anyone, especially crying.

When a loved one is diagnosed with a life threatening disease it affects the entire family. The hospital I go to is great but it doesn’t offer any emotional support services for the family/caregivers. The majority of patients I see all live at home where at least one  family member cares for them. Hiring caregivers to come to the home is very expensive and not usually covered by insurance.

When I was at my “sickest,” meaning I couldn’t sit on the toilet or shower by myself; my son called a county social worker to see if there was help available. Her response was … and I quote, “The State of California is not going to babysit your mother.”

He was so angry he spoke with her supervisor who did apologize but told him there is nothing like that unless we hire a private agency. In Southern California they charge $20.00 an hour, with a three hour minimum.

We bought a handicapped toilet (which I still use because of my balance problems), and I can shower by myself now, although I wait until hubby is home (so I don’t have problems, like falling),  so it worked out for us, but what if I didn’t have family to help me?

I know I drove my son and husband crazy at times (ok, a lot of the time) because of the three different opiate drugs I was taking for pain. It would have been nice for them to go to a support group for caregivers and share experiences. Two people we knew did come in a few times a week for an hour,  to give my son a break so he could leave the house. My husband had to juggle caring for me, driving me to doctor appointments,  and continue working full time because of the mounting medical bills and ordinary living expenses. I of course, was too sick to work, so money was always a concern.

If you know someone whose caring for a loved one who is seriously ill, how about sending over a cooked meal? You can even buy a ready made one these days at the grocery stores. How about mowing their lawn when you mow yours? Or offer to watch the patient while they go to the movies? I’m sure if you think about it, you can come up with something that would mean so much to a caregiver or the patient. Who knows,  you might be “in their shoes” some day.

Be well and be kind,

Ingebird

An Open Letter to Healthcare Providers (Specifically MDs)

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Cure sometimes, treat often, comfort always – Hippocrates

 

Dear Doctor,

We patients come to you looking for answers as to why we feel sick.  Waiting to see you in a small exam room, wearing only a paper gown, with our legs dangling off the exam table is intimidating in itself.  Most of us see you as an authority figure; you are the one wearing a lab coat with several medical degrees hanging on the wall in your office. You must know what’s best for us.  Be aware that your attitude, sets the tone of how well your patient will respond to treatment or even recover. Your words are powerful, so be careful what you say.

Telling a patient “they are a complicated case” doesn’t help him or her. The patient is already “freaked out” knowing they have a disease (like cancer) that could kill them. The last thing your patient wants to hear is that their disease is complicated. It gives them the idea, you have no idea what you are doing and maybe you don’t. If their disease is too much for you to treat, how about referring them to someone else; telling your patient you want a second opinion, so you can come up with a plan. I have met a few of you over the course of my adult life, who bristled when I questioned your diagnosis or asked for a less toxic way to treat me. I left feeling as though my thoughts didn’t count so I never went back.

Patients have told me too many times that their doctor or nurse practitioner gave them “bad news” with a cold indifferent attitude. Some were angry over it but most were distraught. I remember the day I was told I had cancer; it was right after I was rolled out of the colonoscopy room. I was groggy from the test and some woman, who I never met or have seen since, told me matter-of-factly, “Mrs. Scott, you have rectal cancer,” and immediately walked away. No emotion. No empathy and definitely no tact. Luckily for me, I’m a tough broad. My response was, “rectal cancer my ass.”

Since I already knew I was very sick, I didn’t need to be reminded by my medical team when I came to see them how sick I actually was. I knew my chances of survival was slim but my team never acted that way toward me and they never made promises they couldn’t keep. They told me they would do their very best to get me well, and isn’t that all we can ask for? For them to do their best?

Studies have shown that a patient’s attitude is as important as taking medications. A positive (hopeful) outlook helps fight the disease. Stress lowers the immune system and having a doctor with a bad attitude will stress anyone out. So stop with the bad attitude already.

If you, dear doctor tell someone they are a hopeless case, you have already sealed their fate. In their mind they are a “dead man walking” which might not be true. These days there are too many allopathic and holistic treatments that can either cure a sick person or help them manage their disease and maintain a good quality of life. The hospital I volunteer at has many examples of “cured” patients that came from other hospitals and doctors who told them they were hopeless cases. Not all hospitals are privy to the same medicines and neither are all doctors. Just because you can’t help someone doesn’t mean another doctor can’t either. Many times they can.

When we get sick our whole body/mind/spirit need treatment. Our entire being is sick not just one part. It’s important for you dear doctor to understand that.  Patients have access to much more information these days and many like me, go online to research different treatments. We see ourselves as a member of our wellness team; actually no, we are the captain of our wellness team. We don’t just want to be told what to do, we want to be part of the decision-making process.

But before any of that happens it starts with the first time we meet you. Your attitude sets the tone as to how our relationship will be, so even if its bad news, please say your words “sweetly.”  It will be easier for us to swallow.

Sincerely,

Inge