The RIGHT Question

If you have followed this messaging for 4 1/2 years, alot has happened in all of our lives. Relatives and friends have joined and departed. Covid happened. We all grew older (and wiser!!) Without a doubt, everyone of us has been impacted by cancer, within this time. Perhaps then, you read this page with more interest or even trepidation. One thing is certain, once cancer touches our life, it changes us forever. You will check in with others about their own experiences and journeys. You will have more awareness and empathy. You will search the web, get referrals and put “real life” on hold. You will await test results with fear and celebrate normalcy with cheer. Frankly, it’s all exhausting. Well, fear not!! Now I have one more thing for you to do in this new dynamic. “Dear God Joanne, enough is enough. Can’t you see we are all exhausted?” Yes, but it can make all the difference.

I’ve mentioned this before: Every week, the team meets for cancer conferences (Breast, Lymphoma, Lung, Neuro, GI, general etc). It adds hours to your doctors’ days but, behind the scenes, they are critical to your care. Your case is presented, everyone weighs in and a plan is suggested. Pathology is reviewed, scans are shown, senior Docs discuss experience, younger Docs bring new info to the plan. After each case, the room quiets and a protocol nurse asks THE question: “Does the patient qualify for a clinical trial?” Out of everything up to this point, this is the most important question.

If your case should be considered (not all can or are necessary) for a new trial, it is incumbent upon the treating physician to discuss that with you. Not all oncology centers offer all trials from NCI. University Hospitals have their own research. Pharmaceutical and device companies have their trials as well. It’s complex. There is alot of paperwork and decision making with your doctor. Even if you sign up, you may be chosen (double blind study) to receive standard treatment vs receiving the new protocol (old phrase guinea pig). So what? You are brave.

My recommendation is this: when diagnosed, ask your Doc if you qualify for a clinical trial. Even, or especially, if your disease becomes metastatic after you had received standard care, there are always new trials; be sure to ask. They may send you elsewhere. In our office, a clinical trial nurse would seek these out and apply for patients.

Why ask that question? Cancer treatment is rapidly changing . There are 3 phases (actually four with O). A phase 1 is toxicity testing, phase 2, modify, dosing etc, phase 3 compare a new combination, drug, timing, delivery etc. to standard therapy, to see if this new process has better outcomes.

Here is a great example from just last week: University Virginia tested something so complex, but highly effective for the most prolific disease in men: prostate cancer: It’s almost space age… (find more at engineering.virginia.edu). Not from the dept of Medicine, but the Engineering and Applied Science program, Oct 16th they published a ground breaking study involving just 44 men (small sample) with localized prostate cancer. Nanoparticle-directed focal thermal ablation (a mouthful). They use gold nanoshells with MRI and ultrasound fusion. The tinier- than -a- hair nanoshells accumulate in the tumor as targets for near-infrared laser treatment that heats and destroys cells. 73% of men had negative biopsies after 12 months.

Advancements are coming all the time. This one complicated example demonstrates that cancer therapy is evolving dramatically. We now know tumors that are the “same” in pathology, behave differently within each body. Tapping into that genetic information is key to further success.

Be hopeful. Help and brilliance is on the way! Ask THE question for yourself or a loved one. Then make a good decision and, as always, continue to be brave.

PS: If there is not ongoing trial for which you qualify, or you are turned down because of various factors, do not despair, the universe has conspired to present the perfect plan.

The Shoe Drop

As we age and more friends and family face the cancer drama, we may find ourselves anticipating the shoe will drop. There is usually alot of hair raising panic as you schedule appointments, wait for biopsies, consults and procedures. You quickly search the web, often allowing the alittle too much information in.

If you have a new cancer diagnosis, go to “NCCN guidelines for patients” and find good information. For many diseases, other good valid sites,even non cancer, you will see information from Mayo clinic and Cleveland clinic with general overviews.

When Shelly and Jane were diagnosed, their ashen faces betrayed their investigative findings. Shelly has pancreatic cancer, one of the most difficult diseases with limited life expectancy. Her issue was common, with jaundice and back and abdominal pain rapidly advancing. Her outcome is uncommon. Following Whipple procedure – significant surgery and lymph node removal, she underwent chemo and radiation. Surprising to both of us, is that she comes to review scans 3 years from her diagnosis and her new scan is clean and clear. She looks fantastic, regrew her hair, is eating well and regained weight. She is active and headed to North Carolina to see her first grandchild turning one years old. She confesses his coming gave her something to live for, a widow at 72 years old. Her face is bright, her eyes excited and her demeanor powerful. We are both amazed and relieved.

Jane follows in exam room 2. Her fate is glioblastoma brain tumor. Life expectancy is months not years. Following surgery, she has completed chemo and radiation. Her 6 month scan is clear of disease but we will repeat MRI’s every 3 months. Jane does not want to talk about her cancer. She is showing me pictures of new baby twin girls her granddaughter delivered in England. With her good news today, she is flying out to visit them. Her immune system will be boosted with a powerful force and I have no doubt that if anyone can beat the odds it will be sweet Jane.

Never lose hope. These 2 most devastating disease stories remind us of the power both within and outside of us. New therapies are happening all the time. Research studies use of aspirin to avoid pancreatic and colon cancer. More immunotherapies are coming available and even cancer vaccines.
Here is my advice: If you want to fight,find a team on your side. No one wins wearing the opposing jersey. Every board certified oncologist is bound to provide the very best, most up to date options. Cancer is no longer a death sentence. It is often a pain in the ass problem, but come into the process with hope and expectations.

PS a word about Breast Cancer to honor the month, new guidelines are expected to add screening for those with family history at age 40 not 50, immunotherapies are being added for metastatic disease. Women are living much longer even with disease spread and docs are now used to managing you for years. Take heart. Remain proactive. For others when there is a vaccine ( being tested in UK) get it.


God Bless,and for those impacted by the recent storms, may you have strength to recover.

Preparedness

The images from Helene are shocking and people wonder if they were prepared. Sadly not for this. As with the terrible storm, there may be many times in life your world spins out of control.

Everyone of us would rather avoid than suffer. Avoidance is built into our DNA. We all would agree that less is more when it comes to drama. Even with cancer we hope to find an easier path. Take lovely Natalie this week, “Doc, with my breast cancer they wanted to give me chemo but I refused. Actually I told the medical oncologist to ‘get the hell out of here, are you crazy?’ I’ve buried 4 husbands and at 87 I say enough is enough!” While we may be offered the “best care,” we must be honest regarding what is best for us or a loved one. When a disaster, a life altering event or cancer occurs, we have to appreciate the change in the trajectory. It is naive to believe that life will ever be back to normal. Just as those impacted by all the devastation recently, the desire to rebuild or remain whole is there but a new path must be forged . After the shock, recognizing this fact will bring them out from tragedy to find a new life.
It is heartbreaking, but every town and home cannot be rebuilt. Renewal is only possible with renewed perspective. Yes there is survival mode in every case. I am not suggesting whatever the drama that you give up. I am saying that you must take control. Always, what ever the threat, be in it to win it. Do not be a victim, ever.

Borrow from the strength we are witnessing. Human nature is resilient, strong, fierce, and sometimes just pissed off.

Nancy flat out says, “Screw breast cancer month! I am so mad about this”. I know better than to placate her. Nancy’s idea of control is cranky Diva. That’s OK too. On and on the visits this week are about shock, fear, sadness and then fighting, accepting and self determination.

No one is ever prepared. It’s not how life works. Think of all the fabulous, exciting, thrilling moments you have had when life wasn’t planned. Believe that the same dynamic can occur when you are challenged. Optimism will return, resilience will master the events. Acceptance will bring peace. Again and again people will take the initiative and have the perseverance to come through. No, sadly everyone won’t be saved or cured. Many will not be able to manage. We have compassion and empathy for them. But we can value strength of those who say, “Look at this mess, I lost everything, but I am alive and safe”. It’s about perspective.
There is faith that is stronger than preparedness and that light can be found in the depth of despair. Then optimism will grow from even just a little bit of hope.

Code Brown

You might think this is clean up on the baby aisle. Nope! We could barely get thru the cancer conference, a procedure or a consult without all of our phones blaring the emergency signal this week. Truth- I had to look it up! It’s severe weather impacting the hospital and at level 3 the highest risk. Or… we could have looked out the windows as “Helene” barreled by Florida. Tragic devastation, lives lost and many changed forever. Generations to rebuild and the dramatic rescue at the Tennessee hospital with 50 people on the roof will see that hospital lost completely in a rural town that depends- jobs, medical care, life saving.

The alerts continued to screech even when we were home. Doctors and nurses are used to living on high alert. Patients can “crash” at any moment- right in front of you, hence the need for advance life support training. But while Father Time takes his toll (as Jeremy said this week… Doc don’t get old, its awful! Hmm he is 10 years younger than me), it’s Mother Nature with the upper hand. She doles out chaos and challenge to the unsuspecting. As the sun now mocks, the scenes are chilling along Helene’s path.

Here is what happened in the center on the East coast: While there was significant debris, computers down for a few hours, but no damage and the center was open. The impact however for patients far from the hurricane was the challenge. John begs off therapy next week to help his sister in Tampa. She is also getting cancer treatments and now has a flooded house and car. Terry didn’t even come in- she just phoned while driving to her daughter, a single mother with a baby in devastated Atlanta. A nurse called off work to travel to her parents who retired to Tennessee, if not in the “eye” , sadly in sight. Shock is reverberating throughout the southeast US. The hundreds miles wide storm upended lives far away from landfall, with family and friends dropping everything, even their own cancer treatments to help. I am always impressed with the altruism patients show. You would think they would be self centered when diagnosed. But staring a life threatening disease in the eye, seems to make many more aware of everyone’s vulnerabilities. Compassion and concern are selfless.

God Bless all those suffering and the many family, friends, neighbors and workers who are digging in to help others. Cancer care in these situations becomes a small part of patients’ lives and reminds us all, that as a hand of hope is extended to others in harms way, Mother Nature also abides within.

Umpa

Today at 8:44 AM Eastern time is the first day of Fall! And so, may I suggest that it’s time to break out your lederhosen and steins while you enjoy colorful Oktoberfest activities?

This refreshing Autumn weekend is a great opportunity to offer a shout out to my dear, lifelong friends, Mary and Skip. They organize, host and feed! over 20,000 people at a German club in Delaware for fantastic Oktoberfest festivities. Many of us would have a challenge prepping dinner for 20…. can you imagine? The complex German cuisine is prepared lovingly by the many, now seniors, who have participated for decades, introducing the custom and tradition to children and grandchildren.

What does this have to do with cancer, Joanne? Quite simply, a phenomenon mentioned so often in this space: cellular immunity. It is not even a stretch. Everyone participating from the worker bees to hundreds of volunteers to joyful celebrating participants and even the Umpa band that flew in from Germany, boosted their cancer fighting creds. More than supplements, exercising in nature (highly recommended), getting screenings, eating a healthy diet, avoiding smoking and alcohol, this opportunity outweighed it all while providing pure magic.

The hormone oxytocin, camaraderie, joy filled joking and good vibrations combined for more therapy as well as body and brain healing. So, cheers and congratulations to Mary and Skip, and the usual suspects, for doing more for cancer care in your community in one weekend than chemo, radiation and months of treatment could.

If you have an opportunity to engage in activities, step out of your comfort (and slippers) and go get some. You will be blessed with massive impact at a nano-cellular level that science has yet to explore.

If you are asked this Fall to volunteer: a book sale, a children’s game event, a church festival or even an undertaking like this, just say yes and you will surely be blessed in return. Take care, Gott signe Sie (God Bless you).

Note: September is Prostate awareness month. 80% of men over 80 will have this disease. We are achieving more and more success with new developments even for metastatic disease. Find more details at the American Cancer Society website: cancer.org for everything from screening to treatments available now.

Brains of the operation

Have you noticed what a bully your big beautiful brain is? It literally pushes us around. It tells us what to think and how to act….all the time. It never takes a break. It even tells us how to work, play and who to love. So much power! But this mysterious, magical organ is never autonomous. It actually relies on our strong and healthy body. Not just for blood flow, but for deeply impactful brain-gut connection.*

Essentially, scientists are recognizing that our “second brain” is our intestine (butterflies? gut feeling? gut wrenching? etc). This ENS (enteric nervous system) communicates constantly with our CNS (central nervous system.) Emotional shifts can cause IBS, Diarrhea, bloating, upset stomach and irritation in the GI system which can in turn impact our brain (thanks alot) triggering mood changes, depression and anxiety.

Real question… what’s an ENS-CNS body to do? Since new research finds that chronic disease like cancer and diabetes are affected by the gut microbiota, it behooves us to give the ENS some TLC.

Another great site to explore is http://www.myclevelandclinic.org and look for the gut-brain connection. It details body functions affected (even hormones, mood, stress and immunity!), describes all the medical symptoms and conditions involved, such as chest pain, chronic fatigue and pain, Parkinson’s disease and more.

Treating this organ with love includes pre, pro and post biotics , cognitive behavioral therapy, eating a plant based varied diet, reducing sugar, additives and cholesterol and of course exercise ( 150 min per week… 25 per day). Calming the racing brain can be accomplished by deep breathing which stimulates the vagus verve- the nervous system part of the brain -gut connection.

Scientists are looking for ways to improve immunity and now recognize how the brain impacts wellness and vice versa. It is an exciting time (I get butterflies!) because we are enhancing our own physical and mental capacity to improve wellness. So, while you work out, do pilates and planks, jog, bike and swim to control that belly, be grateful that this “second brain” is worth every effort you make to keep it healthy.

Take Two Aspirin

The phrase “Call me in the morning” actually works. The human body has such great ability to heal itself, running to the Doc’s isn’t usually necessary. But we are living in a changed time for healthcare hence today’s post of advice.

  1. When you sign up for a plan this Fall, try to get one that is a PPO since you can call and get specialty care without going thru your primary. That is important because even primary care docs are so backed up that it could take months to see one, then another few to get into the specialist.
  2. When you do make an appointment (if you can get thru the long phone trees these offices have) ask for first available…. even if you see a nurse practitioner or PA. That gets you in the door. You may be surprised that it is already next year to get appointments. Ask to be called if they have a cancellation. Then call another office and get on their list. Don’t just sit and wait for your first choice. If the “2 aspirin trick” doesn’t work then you need to be seen and even when you are, it will takes weeks to get scans, biopsies and other specialty appointments.
  3. Now is not the time for a “less is more” strategy. Always ask for the CT instead of an x-ray (tumors hide behind the heart.) Inquire about a pet scan. MRI’s of brain and joints are best. Because it is taking so long to get anything done, I go big. If I order an x-ray I have probably lost another week before a CT or MRI is scheduled.
  4. Iatrogenically induced “disease” is real. That’s “unintentionally doctor caused”. Check side effects of all meds ordered. Pharmacies dispense a general (every day,or every 4-8 hours). Meds can be nuanced based on the patient. If you are thin and frail, every 8 not 4 hrs may be for you, so they need “tweaking”.
  5. In that regard always set up a followup appointment with your doc in no further than a few months if this is a new or developing issue. You can always say, “I’d like to be seen sooner”.

Have you noticed that time trying to access healthcare system is increasing? Its real. All these “urgent centers” cropping up for acute care are trying to keep all but the most sick out of hospital ER’s, which is fine, but they do not offer care for specialty issues. Remember, especially if you have cancer or a major illness (acute or chronic) that you are special and must have care.

Everyone is battling for limited resources. It’s not as bad as countries with national health service, but it is still becoming a challenge. We want to believe that healthcare is here to serve us, be available and helpful, but a lot has changed, especially with corporate takeover of hospitals and physicians. So again, get the best insurance supplement you can, advocate for yourself or your loved ones and demand the attention you deserve.

Shout out today to Cancer nurse Valerie on the 45th anniversary of nursing! She is doing a HALO jump (High Altitude,Low Oxygen) from 18,000 feet!. She must have borrowed the nerves of steel and bravery from her cancer patients.

Labor Intensive

“Doc, this is the hardest work I’ve done”. Melvin is being treated for a lung cancer with chemo and radiation. It will involve 33 treatments M-F for radiation, along with 6 cycles (one every 3 weeks) of chemo-immuno-therapy. “How so?” I ask, since at 81 I am sure a long life wasn’t all that easy. Also I wonder about the side effects he is having. I am not prepared for his answer. “All my life I traveled working in sales. I was never home. It was like a honeymoon each time I returned. Now I am stuck and can’t go anywhere. This cancer is killing me.” (True… if he doesn’t stay put for treatment). I love and admire the care spouses and families give to our patients. In this case, Melvin wants breathing room. His wife is over involved and he is feeling helpless and powerless. I wonder if I can help. I invite his wife back to exam room and she immediately thinks its bad news. Rather than having Melvin mix it up with her, I decide to be the fall ‘guy’. I tell her,” Your husband is doing fantastically well. We keep a very close eye on him daily and so I had a thought for you. At the beginning of the diagnosis, you mentioned the need to postpone your visit to Maine to see your ailing sister. I would like to suggest that you reconsider before the weather turns. I promise you that Melvin is managing and on a fairly boring path now.” She looks confused but says, “Well Doc, if you think it would be okay to go, he does have friends who could come over if needed”. Cancer always happens uninvited and disrupts plans and life. I advise them both that this would be a refreshing change in the midst of all their efforts. By the end of the visit, his wife looked energized and he was relieved. A plan was hatched.

Labor Day isn’t just to celebrate American workers. It also signals “get back to work and school”, but for many it is also a day of rest. We all need that extra time away from involvement. Many patients will even feel better Tuesday because they had a 3 day break from radiation and symptoms start to improve.

Melvin teaches us a lesson this week. Living is hard, staying alive is harder. The efforts logarithmically increase with age. This is also a reminder that our caregivers need care and support. I have no doubt after a week or 2 away, Melvin and his wife will reconvene with increased spirit. Too often we get so caught up in the work, even the work of cancer treatments, that we forget we are meant to enjoy a full life- otherwise why do it all? So today, find a way to enhance your relief efforts, may be a solitary walk, take yourself to lunch, shut off the TV and phone and catch up on a good book in peace. Your immune system will thank you. Monday should be “Labor-free” Day” and you earned it.

Inflammaging

The knee bone’s connected to the thigh bone! Don’t laugh that little ditty got me thru med school. The body is so intimately interconnected and now we know that inflammation in one area impacts several organs and systems.

Recent data finds that Alzheimer’s disease is NOT a brain issue! What? Sure it affects the brain and cognition, but the data was wrong in the studies suggesting it originated with amyloid in the brain. Deeper dive discovers body -mind connection once again. As with everything else related to disease… even cancer we are learning that it is the immune system impacting….well everything! Diabetes is no longer a lack of insulin alone, heart disease is inflammation, arthritis and myalgias are not etiologies born in bone and muscle. Cancer is significantly impacted by immune milieu in the body, hence the use of immune modulators to increase T cells.

What then is an actionable item for all of the above? Improving your immune system. For years we assumed by “fixing” the error in our bodies (give insulin for diabetes, lower cholesterol for heart, dialysis for kidneys, inhalers for emphysema….. meds meds meds until we need bigger pill boxes). Now science is advising these are all just temporizing measures. The real culprit is the immuno-senescence of the body (aging cells), which increases chronic inflammation. The best news is that there is research now for therapeutic remedies. Oh how naive we’ve been to assume that taking a pill or supplement could make our telemeres longer for aging health or erase inflammatory damage.

What is an aging body to do if we can’t medicate it all away? Here’s a simple list:

1.Exercise daily- 30 min. Any movement good, aerobic best – just go for a walk. 2.Lift some light weights to build muscle 3 times per week. 3. Eat nutritiously (American Institute of Cancer Research (AICR on line for diet advice for cancer. Generally a Mediterranean diet, less meat and dairy.

Well being as we know is also impacted by other factors: Engage with friends. Meditate to increase oxygenation and reduce stress. Practice good sleep habits. Maintain a normal weight….fat cells are inflammatory. It’s all easier than poisoning your self with more and more meds.

Your body can be healthy and rejuvenated even after disease or injury, but you can’t just pop a pill or new fancy supplement. In practice I am witnessing the toxification of the body by more and more medications. Patients arrive for cancer therapy, complicated as it is, with 20 pills (blood thinners, anti hypertensive, anti cholesterol, arthritis, and often multiple ones for each problem. If a patient has diabetes they may be on 3 meds plus insulin. What is this telling us? The medications can’t do the job of mitigating factors leading to disease. Before you throw your pill box out, discuss with your doc, find what is necessary. Develop a better activity and nutrition plan.

Bottom line…. To live longer and recover faster from injury, illness, even cancer treatments combat inflammaging to live and love your best life.

Trust Yourself

The sly nurse was testing my mettle. She could have given me a heads up. As I open the door, Greg unloads on me and, as the covering Doc, I race to catch up. He is furious about the side effects to hormone therapy to reduce testosterone (miracle grow) for prostate cancer. The guidelines are practically set in stone and his management designed not just to treat, but avoid developing metastatic disease or even dying sooner from the cancer. But standards should never replace listening to the patient. The treating physicians offered the best practice and Greg wanted “everything done”. When anti- androgen therapy is delivered, however, it is frequently in a shot that lasts months. Greg is midway through the 6 month injection effects and is furious. He now has “buyers remorse” and we can’t take it back. (That is true for surgery, radiation and chemo effects). There is new medication for hot flashes, anti depressants and some mitigating actions, but mostly Greg is done with all of this “healthcare” that is making him sick.

Later, Alexander comes with a long list of his own side effects to treatments. He wants to quit chemo. At 82, I am not going to coax or cajole him into continuing. That would be insulting. He knows what he is willing to sacrifice at this point in life and he needs to determine his own path. For Jenna, even though the testing showed improved survival with chemo, she chose only radiation and hormones for breast cancer and is satisfied she made the right decision.

With newer treatments, monoclonal antibodies, immuno-therapies, various new combinations, in cancer treatment we physicians often apply the “more is more” principle. With 1 in 2 seniors expected to be diagnosed with cancer, we all need to adjust our thinking.

So here is my message to these patients and you. Choose what is right for yourself….always. Don’t let us bully you into treatments that are more aggressive than you want. As I told Leon, who is weighing therapy vs observation for a new cancer, your physicians have an obligation to provide recommendations for the most up to date, state of the art treatments to enhance and expand your life. When you come into the center we assume you are seeking care. Always ask about side effects and even write them down since it is hard to recall after a visit. If you have therapy and are completely miserable don’t tough it out. Tell your Doc. They frequently reduce doses of chemo, change hormones and even modify radiation.

Your mission is only if you choose to accept. I am aging right along with the patients for whom I care. I understand their perspectives. Patty said, OMG Doc, do everything that will help! I am alone with 3 small children… help me survive for them, I can take it. But as seniors are aging, what is right for a young mother is not for an 80 year old. How do you want to live your remaining time? (may be months or years). You need to decide and then accept your choice. Having advised thousands of patients over the years, I provide my best recommendation while respecting their own value system. I tell them the national guidelines (you can find NCCN guidelines for cancer by type on line), the most common side effects, and occasional awful side effects! If you choose to do something “less”, I will still be here to help you manage if the disease advances, spreads or becomes burdensome or painful. You can abandon therapy but I will not abandon you. You will not be punished for your decisions. Those of us in cancer care respect that all decisions are your choice and you have many reasons for making them. Doctors and cancer centers will still welcome you, even if it’s to hear options and make another choice.

With aging, we must be realistic. I told 92 year old Harvey, that we can treat if you like (and he does want this) but it will not extend your life at this point. Whether its medication, surgery, chemo, radiation, be part of the decision. Your choice will be the right course at that moment, and it can always be modified as you continue your path. Today I give you permission, as I have in the past, be your own advocate. Modify expectations. Listen to your own voice. We are here to help you to live your best life. Be assured you are smart enough to know what is right for you. God Bless.