Hole-y Moley!

One of the drawbacks of multiple myeloma are bone lesions. What that means to non-medical folk (like us) is that the plasma cells are reproducing too quickly in the bone marrow causing lesions (or holes for non-medical people) to form. More correctly they are called lytic lesions.

When you find one lesion on the skeletal system, the cancer is called plasmacytoma. When you find multiple lesions in the bones - it is called multiple myeloma. When Buffy went to the doctor to discuss the bone scan, she asked how many lesions Dad had. The doctor said too many to count! WHAT???? Basically his bones are in bad shape and he is in risk of breaking them quite easily.

The holes in his bones are different from osteoporosis. Instead of a weakening of the whole bone, or losing density - his just has random holes throughout his body - femur, skull, back, arms, pelvic bone, etc. Okay so I understand why the doctor didn't bother to count. Buffy said that when the doctor showed her the scan it looked like someone had taken a hole punch to his skeleton.

Treatment options are going to work on a few things:
1) Use medication to build up his bone strength.
2) Use radiation to shrink the 2 largest tumors - chest and pelvic bone.
3) Use medication to keep new tumors from forming and manage the ones he already has.
4) Try to control the overgrowth of plasma cells in his bone marrow.

If he does not respond as well as hoped to the treatment options above, he will opt to have a bone marrow transplant.

All in all, we still feel grateful. The doctor said that if you were going to have a stage 4 cancer - this was a great cancer to have. It responds well to treatment and the treatment is usually not chemotherapy. Lucky Dad?

Doctor Update

Dad started taking steroids as the first step in his treatment for Multiple Myeloma. In the past 4 days it has reduced the tumor on his chest substantially. The area that is visible to the eye has been reduced by almost 80%!!!! Still visible but much smaller.

The most important thing about the reduction in size is that Dad's pain level has been reduced. He still has pain but not as intense.

The second thing that is the most important about Dad's tumor being reduced is that he can now attend the Whiting reunion. :) He is very excited.

Although we love the new medicine that has produced such fast results, there are some drawbacks. His blood sugar is now unpredictable and his diabetes cannot be managed with pills. He has started taking insulin last Friday.

Bone marrow biopsy was on Monday and tomorrow he will meet with the doctor. He will start taking steroids again in a week.

I am not sure what type of steroids Dad is currently taking. He couldn't recall and said he has had a hard time remembering things because of this medicine. He said that family and friends have called and he couldn't remember what type of cancer he had and what type of medicine he was on. While I was on the phone with him, he wrote it down to make sure he can tell them.

We are happy to see Dad's pain level reduced. We hope Dad will continue to respond well to treatment. We thank everyone for their prayers on Dad's behalf. We know they helped. Although we would prefer to not be in this situation, we are grateful that we have recently received positive news. By positive news - we mean as good as it can be with stage 4 cancer.

Here is a picture of Dad that I stole from Misha's blog. Not a great picture of Dad but he is wearing his new favorite accessory. Dad got a pin when he initially met his oncologist. You can't see it well but his small pin says "Cancer Sucks." Genius.

Knowing is half the battle

I just borrowed a line from GI Joe. Now we know. The news from the doctor is promising. We need to do a few more tests next week but treatment started TODAY! (Lots and lots of pills).

I am going to post my brother Joe's email to the family earlier today:

Hey All,

I just got a text from Buffy; she is with Dad at the Doctor's office today.
Here is the deal from her.

Plasmacytoma multiple myloma
more later
Very treatable.
Radiation on big growths on chest and pelvis mixture of meds for small growths

That is some good news for us all!
I am stuck in the Seattle airport for the next 4 hours, so I have ample time to research this disease.
I may have a cure ready by the time my plane leaves.
I will highlight the positive news, because I think everyone is already very aware of the negative possibilities.
It is still a question of when and how long, but maybe not as soon as we have been saying.

According to this website, that is some really good news.
(Reallly Good News follows)
Phil Brown has a better than 50 percent chance of living more than 3 more years with this treatment.

See below for more details about how, and what is involved.

The correct spelling is:

Multiple Myeloma/Plasmacytoma

Multiple myeloma is the most common primary bone cancer. It accounts for 1 percent of all cancers. It occurs in about 4 out of every 100,000 people (lucky Dad!) in the United States each year. Multiple myeloma is responsible for the deaths of 10,000 Americans each year.

This disease generally occurs in older adults. Fewer than 3 percent of cases occur in people younger than 40 years of age. Multiple myeloma tends to be more common in men than women. It is twice as common in African Americans as it is in Caucasians.

Cause

Multiple myeloma occurs spontaneously (he has long been a spontaneous guy). Patients exposed to ionizing radiation and the pesticide dioxin may develop the disease (Tacna, St. Johns...).
Infection with some viruses (HIV and human herpes 8) (Any comment, Dad?) has also been associated with multiple myeloma. No known risk factors are inherited.

Symptoms

Patients usually complain of bone pain. Other symptoms include:

• Fatigue
• Feeling ill
• Fever
• Night sweats

Weight loss is not common in the early stages.

Physically, patients are pale with diffuse bone tenderness, especially around the sternum (breastbone) and pelvis (hips).

Pathologic fractures (fractures caused by tumors) occur frequently. Thirty percent of patients will have their multiple myeloma first discovered when they develop this kind of fracture. The spine is the most common location for a pathological fracture. It can also happen in the ribs and pelvis. Compression of the spinal cord occurs in 10 percent to 15 percent of patients. This causes pain in the back and legs and numbness and weakness in the legs.

Patients who have high levels of calcium in the blood may experience nausea, fatigue, confusion, constipation, and frequent urination.

Patients with anemia may experience fatigue, weakness, and shortness of breath with exercise.

In advanced cases, patients typically have recurrent infections and can have kidney failure. Multiple myeloma is not confined to a specific bone or location within a bone. It tends to involve the entire skeleton. When only one lesion is found it is called a plasmacytoma. Most doctors believe that plasmacytoma is simply an early, isolated form of multiple myeloma.

Multiple myeloma is currently not curable. Chemotherapy may prolong life expectancy and decrease symptoms.

Chemotherapy

The standard treatment medications are melphalan and prednisone. The median survival rate is three years with this treatment alone. For patients in whom this therapy is ineffective, alternatives include:

• VBMCP (vincristine, carmustine, melphalan, cyclophosphamide and prednisone)
• VAD (vincristine, adriamycin and dexamethasone)

These treatments may cause severe muscle weakness. They may also increase the chance of infections. Thalidomide and interferon are also sometimes used.

Radiation Therapy

Radiation therapy is reserved for decreasing the size of symptomatic bone lesions.

Fortunately, a recent advancement in the treatment of multiple myeloma has increased response rates and survival. This treatment consists of high-dose chemotherapy, followed by autologous stem cell transplantation. With this treatment, patients have a 20 percent chance of living longer than 10 years.
Dad may not be or probably isn't young or healthy enough to try something so radical, so I guess this one is out.

FYI, Median means that exactly half of the people live 3 years, so another way to state that is that Phil Brown has a better than 50 percent chance of living more than 3 more years with this treatment.
I rely on my more numerically oriented brothers and brothers-in-law to explain if there is more to a median value, but I think that is correct..

I am trying to learn how painful/sick this chemo treatment makes the patient; I will let you know what I find out.

Joe

**** If you want to know more - there is a great synopsis on wikipedia.

Thank you to everyone for all of your prayers - we know they helped!

Biopsy

Misha took Dad in for his biopsy this morning. And was there for 7 hours. We love you Misha!

They drew his blood twice (the first time was not supposed to happen) and he went in for another PET scan before they actually biopsied his tumor.

Unfortunately, Dad couldn't take his pain medication this morning (doctor's orders). I don't quite understand WHY, but he could hardly take a deep breath. He had to lie on his back for the PET scan, so he was in some excruciating pain by the end of the day. The medical staff somewhat redeemed themselves when they gave Dad a Valium so he could sleep after the testing.

** We realize that these are good people who are just doing their jobs but 7 hours does seem a little excessive, especially when you have a patient in excruciating pain.

It will be a few days before we know the results of the biopsy. We would know by Thursday but it is a holiday in Utah. Those darn pioneers and their celebrations! Just kidding.

So Friday is our day to know more. Just a few more days. Just a few more days. Just a few more days. We are going to keep on telling ourselves that. Until then, let's hope Dad's pain medication will get the job done.

Good News, It's Only Stage 4 Cancer?

Dad met with his oncologist today. They do not know what kind of cancer Dad has but they do know that it is Stage 4, but not terminal. They also said that he has a good sized tumor in his sacrum (pelvis) and that may be what is causing his legs to ache so badly.

They need to biopsy the chest tumor. That will help determine what type of cancer it is. They can't perform the biopsy until next week because Dad has to go off his blood thinners. When they have determined what type of cancer it is, we will actually know what our treatment options are.

IF (key word is IF) it is his prostate cancer coming back, it is a cancer mostly driven by hormones so they can use radiation and starve the body of hormones to treat the big tumor on his collarbone. If it is prostate cancer, it is also good news that it has been almost 8 years since his prostate cancer was discovered; that would qualify as a slow growing cancer.

Stage 4 means that it is still treatable; they are grouped Stage 1, 2, 3, 4, and Terminal. So he isn't ready for a marathon, but they do have some treatment options. Once there are no other treatment options, the cancer is terminal and out-of-control. We aren't at that stage yet, thankfully.

We have no idea what type of time frame we are looking at but that will be determined on the type of cancer, the treatment options and how Phil responds to treatment.

Surgery still isn't an option, that would be too hard on Phil.

Anyway, that is the latest...whew...
Not great, but some good news.

Here is Dad in front of his favorite place - Whataburger

Yesterday - 07/09/2008

Misha and Dad met with the surgeon yesterday and the news was discouraging. They don't think that surgery is possible because the growth on his chest is large and they are worried about his ability to recovery. In addition, he said that they found 7 other growths in addition to the ones on his chest. The surgeon said that the growths are malignant but they don't know much else.

We have an appointment next week with the oncologist and then we will know more about treatment options and what type of cancer we are dealing with. So hopefully we will have some answers about what our options are.

Dad Update From the Cardiologist

Buffy took Dad to the cardiologist today. They are going to do a stress test tomorrow to see if it is safe for his heart if he needs to have an operation but at this time they don't think surgery will happen, but just in case.