Living with Cancer:

Support groups

One of the biggest challenges for most people is improving their mental state or recovering from the shock when they have been delivered this news. As I said earlier, this news is devastating for everyone. Some people can bring themselves up on their own and have a positive attitude and then begin to fight for themselves. Others cannot do that so easily.

As a patient, it is 100% OK to get help. It could be from a family member, friend or a professional. Do not isolate yourself. Talk with someone. You must think as positively as you can … and then get your fighting spirit on and proceed forward to beat this disease. Not only for you, but for your family, your friends, and strangers you may be able help in the future. It is easy for someone to tell you to have a positive attitude. But believe me, I have been there and I know firsthand that it is not so easy … but it can be done, and with help if needed.

There are a great number of support groups today dealing with your illness. It can be a local support group in person in your area, or online support groups in the U.S. and around the world. Both are very good. You can find support groups for cancer in general … and support groups for your specific cancer, i.e., breast, lung, kidney… It’s great to get support and talk with people who may be going through the same issues you are. I’ve participated in both local and online groups. They’re great places to give and receive support. For ideas, look at these websites:

Cancer in General Support – Cancer.net

Specific Cancers Support – Cancer.net

Nourish your body, not your cancer!  

You are what you eat and you need to do the best you can to help your body gain the strength to fight during this time. What you put into your body is critically important. It’s the body’s best defense against cancer. Now is the time to change any bad habits that some of us have had over the years. I have come to the realization we can all do better, not just cancer patients, but everyone … based on scientific data and not marketing campaigns.

In my years of research, my best suggestion in this area is a plant based diet, i.e., fruits, veggies, grains and legumes. This is not easy for most people to do, but I say try to get there. Very few of us are perfect on a diet. The more you can do to eat more nutritiously, the better. It is hard to get to 100%, but try to get as close as possible.

I am not there yet myself after 14 years, but I have improved my eating habits by roughly 90% better than before my cancer diagnosis. However, most everything in your grocery store is processed food, which is not very good for us.  There are times when you cannot get away from it, especially around holidays, family gatherings, and other special occasions. So something that is not very nutritional every now and then is OK in my mind. Just try to keep it to a minimum.

NEW! (5-07-2019) Another viewpoint similar but somewhat different, is a diet educational clip from MSK:   CancerSmart: In the Kitchen with MSK

NEW! (11-05-2019)  From MD Anderson Cancer Center – 17 Healthy Cooking Tips

Blending and/or juicing is a great way to feed your body the nutrients it needs. There are many informative books and videos on this subject. I was introduced to this by another cancer patient who came over to my house with a juicing machine. He said this helped him get the nutrients he needed.

After 14 years I still blend/juice a couple times a week using usually 3 veggies and 3 fruits in each one of my juices. Juicing/blending tastes great and is healthy at the same time. You can mix and match an unlimited amount of fruits and veggies. Even the healthy fruits or vegetables that you don’t like to eat — simply put them in the blender and you won’t even taste them in the juice with the right mix.

There are a variety of documentaries that helped convinced me of this approach. I’ve shared them below and invite you to check them out. It is always your decision on what diet approach is best for you. These documentaries are available through a variety of methods, i.e. Netflix, Amazon Streaming, to name a few, as well as other sites. These sites are sometimes free or usually at a relatively low cost. I also believe you can purchase DVDs on Amazon.com for a low cost.

Please take the time to watch at least some of these. They are very educational and I believe they will definitely help you in your fight against cancer.

  • Forks over Knives … Fat, Sick & Nearly Dead … Food Choices … What the Health … Food Inc.

Do what you can to maintain a healthier diet and lifestyle to the best of your ability. It’s part of how to Give It Your All!

 

Exercise, one step at a time

Exercise as much as you can. There is scientific evidence that supports exercising to help prevent cancer as well as fighting cancer if you have it already. This does not mean you need to go to the gym or become an exercise fanatic. This means starting out with very simple exercises you can do at home for free. It merely could be going for a short walk if you can, stretching, using no weights, or very light weights if you have them. Try to work out different parts of your body chest, legs, back, cardio etc. with very light exercises you can do by yourself, and avoid the risk of injury. Once you do that, you can possibly move up to more aggressive exercises matched to your ability. Start off slow and build slowly based on your ability.

When I was going through my first round of bad chemo I could only go on short walks with very little exercising. I also tried some deep breathing exercises. As I got stronger, and was able to tolerate more, I raised the level of my exercising to include light/medium weights as well as increased cardio. I know this has helped me in my success.

Do what you can on exercise to the best of your ability. It’s part of how to Give It Your All!

Faith and Cancer

If you are a person who feels strongly about your faith, it can help you emotionally. But what I say to all cancer patients … please give yourself the best chance for success by using modern medicine, as well as the other information about nutrition, exercise, etc. in this document. Just putting it in God’s hands (which I have heard before) is not what your God would want you to do. God gave you the ability to fight the best you can for you and your family. That is what you need to do. This is not an easy journey, but definitely worth the effort! If your faith makes you stronger … then use it to help yourself!

Insurance Issues

I am sad to say, but the issue of health insurance covering the cost of your treatments is almost as hard as fighting your cancer in some cases. I could write a book on this topic alone, but I will try to keep it short and to the point.

It is well known that the expenses with any serious illness are extremely high. My average costs for treatments at one point averaged about $250,000 per year. I was covered well until my company filed for bankruptcy and canceled my health insurance.

Fortunately, my wife was working and I was able to get on her plan. At that point, I said to myself, what would have happened if she didn’t have health insurance? like some other people I know. The choices are bleak here. The number one reason for bankruptcy in this country is medical costs. Some people are faced with a very difficult decision … should they go forward with their treatments, or refuse the treatments due to cost? This can be a life and death decision. These are horrible choices for anyone to have to deal with.

Remember, there are times when you can negotiate costs and pay a portion, or get financial assistance based on need/income, as well as in the case of high cost prescription drugs, write to or call the company and ask about their individual assistance programs.

I have experienced, and know people who had either had minimal coverage, or good coverage, who could not get the heath care they needed. In my case, I have been denied PET scans and MRIs because I didn’t fit within the insurance policies. At one point, my doctor at Memorial Sloan Kettering (top cancer hospital) said I need a PET scan every 3 months due to my stage 4 illness. Then some random insurance claims person denies my request because it does not agree with their policy.  My doctor and I fought for this and won.

In another case my wife and I helped a young female patient with two small children get a very expensive drug called Tarceva (at that time about $150/pill/day) by filling out an application for assistance. The sad part of this story was she was in treatment for lung cancer at a nationally known institution getting the “standard treatment.” When I asked her to ask her doctor about Tarceva (targeted oral med) and Alimta (targeted chemo) the doctors actually said her insurance would not pay for those. Horrible answer! She got in touch with me and my wife and we got her the Tarceva pill for free from the manufacturer.  The very sad news is that it was too late. She should have had this option six months earlier and she may have survived for many more years. Another reason I am compelled to get this information out to others who just don’t know what options are available to them.

Another example was an insurance company that would not pay for “targeted” chemo but would only pay for “standard” chemo since it was less expensive. This happened to a guy I was having chemo with and he said “I guess I will just die now.” The oncology nurses and I got involved and were able to fight for him — he got the target chemo! I could go on and on with different examples, but I will try to sum it up below.

Dealing with insurance companies

Be your best advocate — that includes health insurance. Every case is different, and it’s almost impossible to know in advance what will and will not be covered by your insurance company. What I can say is fight for what you and your doctor believe you need to do for your specific health situation … and check out all options for financial assistance.  If you have great insurance and everything is covered, you are doing great.

Insurance companies love to tell you what is covered and what is not … and stick to it. That is easy.  What they are missing is that every patient is different and may require things outside the norm. This would be putting doctors and patients first, and profits second. That normally doesn’t happen without a fight. I have spent hours and hours on the phone basically fighting for my cases. The insurance companies now will only talk to the doctors in disputes. The catch here is insurance companies know the doctors are way too busy to fight for each patient. Here is where you need to make the call with your doctor, to fight or not, on each specific denial case.

Some lessons I learned the hard way over the last 13 years

  1. Neulasta – One of my favorite stories. This one example depicts an approach I try to use in all of my medical issues.

Neulasta is a shot I would get the day following every chemo treatment, which was every three weeks in my case. It helps boost the white blood count that the chemo kills during your treatment. We do know that the lower your white count, the more you are prone to infections and illness. I was told that this shot is the “standard treatment.”

Every time I got this shot it made me extremely sore in my neck and shoulders for about 3 days after the chemo treatment. So after a year or so following this standard treatment, I asked the doctor if I could reduce this shot from 6 mg to 5 mg. This was an attempt to reduce the pain I was experiencing. He agreed to the lower dose and the pain was slightly less, and my white count remained the same, no loss. As you can guess, I went down to 3 mg and eventually down to zero. There was absolutely no change in my white count, and a lot less pain and discomfort for me. I no longer needed, or got any more Neulasta shots after that … and that was more than 10 years ago.

As I reduced the amount of the shot, I still got charged the roughly $6,000 per shot whether I got the 6 mg, 5 mg, 4 mg or even 3 mg. That extra 3 mg would go directly into the garbage can. Imagine the profit on this drug for all these cancer patients doing what I am doing and maybe not needing it, but getting it because it is simply the “standard treatment.”

Neulasta now has a patch you can wear on your arm instead of the shot. Just ask questions if your doctor suggests this drug and remember my story. Neulasta may work for you because each person is unique. But try to insure everything you put into your body is helping you, with data to back it up.

I am not advocating you do anything drastic with your care, but question everything and maybe try things with the consent of the doctor to make your journey the least painful and most successful it can be for you.

  1. Maintenance chemo (typically not the strong chemo people first get) – Here is an area where I made a mistake that cannot be fixed.

Most people are not on chemo for long periods of time. However, if your treatment is going well and you are asked to stay on maintenance chemo, be aware of my example here.

I was on “maintenance” chemo for 9 years straight. For the first 5 years I was doing really well with the targeted oral medication and the maintenance chemo. I did most everything that I could do before my illness. At this 5 year point I started questioning all 3 of my oncologists about how long I should be staying on chemo. I was concerned about long term negative side effects.

All three basically said you are doing so well with this combo, why change a good thing? I understood and was hesitant to alter something that was working so well for me. No one was willing to change anything that might cause the cancer to return. One oncologist said he has never seen stage 4 lung cancer patients live that long, so he was very honest in saying that he “truly doesn’t know.”

Years 7 and 8, I started to notice I was losing my balance and year 9 my balance was and is still very bad. The first two neurologists I consulted misdiagnosed what my problem was. They said it was the misalignment of the crystals in my inner ear causing vertigo and sent me to physical therapy. The third neurologist did some careful research and found a “not so well known” cause of my problem. It was the extended use of a chemo drug that caused me to lose 100% of my vestibular system (which controls balance). He told me most oncologists do not know about this. He used my case to publish a medical paper to warn oncology doctors about this scenario.

In this case, I waited too long to get off the chemo. I know I followed the advice of several doctors, but I should have realized that there was not much data about these long term, adverse side effects for Stage 4 Lung cancer. Looking back, I should have made the call to stop chemo at year 5, but I also played it safe. I have adjusted my lifestyle with the balance issue … and I am still glad to be here trying to helping others who are in the same boat I was at one point.

  1. Dental concerns.

Be knowledgeable and cautious about a chemo drug called Zometa. Zometa is in the family of bisphosphonate medications, which are typically given when the cancer has spread to the bones.. Any bisphosphonate medication can cause future oral/dentistry problems. If you have taken any bisphosphonate medications be sure to tell your dental provider before any work is done. There is the potential for serious side effects with certain dental procedures.

I was on Zometa for a couple of years due to metastasis in my spine.  When I went to an oral surgeon and gave him by medical background, he refused to pull one of my wisdom teeth due to the risk involved. I thanked him for that since no one had even told me about the risk with bisphosphonates and dental procedures. Here is a link with more info from the American Dental Association.