Met with Surgical Oncologist Dr. Anthony Lucci. He recommended another surgery to remove remaining lymph nodes under left arm. He stated this is standard practice at MD Anderson to remove them all and I only had the lower removed. His concern is any remaining nodes could also contain tumor, although he felt there to be less than a 10% chance any of them would be positive. Sort of a better safe than sorry perspective. I contacted Dr. Crawford (the vascular surgeon that previously removed nodes) and asked him to call Dr. Lucci to discuss the matter. Dr. Crawford doesn't feel the additional surgery is necessary. We're hoping the two doctors can agree one way or another so that it will make it easy to know what to do. Surgery is tentatively scheduled for Thursday April 7th awaiting additional feedback.
We also met with Medical Oncologist Dr. Patrick Hwu. There is a clinical trial available that has shown very good results. You must have a certain DNA type to be enrolled (which approx 40% of people have) in the trial for which blood was drawn to test for. The trial would use pegylated interferon alpha 2-b along with a peptide Melanoma vaccine. In the previous study the same vaccine was used with a stronger drug similar to interferon called interleuken-2. The new clinical trial using the vaccine with interferon may achieve similar results which hopefully would reduce chance of recurrence much better than interferon alone. If DNA is not a match for the trial standard interferon is the only other option. We mentioned the shorter 30 day regiment of interferon verse the full 12 months and Dr. Hwu felt there's not enough evidence supporting the theory and would fully recommend as much of the 12 month treatment cycle as can be tolerated. Dr. Hwu also recommended a CT Scan and MRI of the brain. The MRI is required to be enrolled in the trial.
Both Dr. Lucci and Dr. Hwu are experts in the field of Melanoma research and treatment. By many they are regarded as the best in the Western Hemisphere. MD Anderson definitely offers a comprehensive approach. Going forward they will be consulted for all treatment considerations. If it's decided to go forward with the additional surgery it will be done by Dr. Lucci at MD Anderson. If approved, the clinical trial will be administered at MD Anderson every three weeks and would start as soon as possible.
Dr. Crawford (Vascular Surgeon who performed lymph node disection) offered feedback from the tumor conference he attended where he presented my case. He reaffirmed the opinion that interferon is the only obvious adjuvant treatment to help stop or slow recurrence.
Several specialist at the conference shared that recent studies show the 30 day high dose intervenous interferon treatment alone offers substantially the same results in detering recurrence as patients that undergo the current standard of 12 months of treatement, where the last 11 months are lower dose self injection. Dr. Crawford noted that approximately 75% of those attending the conference informally voted to be in agreement with the theory.
Dr. Crawford contacted the local Oncologist Dr. Xiong with this feedback. Dr. Xiong will also receive follow up information from the MD Anderson assesment. All information will then be considered during a 4/9 appointment with Dr. Xiong in making a final decision about treatment to deter recurrence.
The drain tube came out today and incision is healing well! Dr. Crawford is attending a tumor summit this Wednesday where he is going to present my case for feedback from peers. He will call me if there is any meaningful feedback and I have another follow up with him in 3 weeks.
I have everything gathered for MD Anderson Trip on 3/31. Time to play catch up on school and work. Harvey surprised me with making our trip to Houston a mini vacation. We are going to Galveston after we leave MD Anderson to stay at The San Luis Hotel for 2 nights...which will include the night of our 10th anniversary (4/1)! The hotel is on the seawall overlooking the Gulf. We stayed there with our boys last spring break and it was fabulous.
Metastatic Malignant Melanoma was found in one of eight lymph nodes removed during 3/15 surgery. Metastasis (tumor) measured 0.8 mm. Sentinel Lymph Node Biopsy performed during previous surgery returned one lymph node with metastasis (tumor) measuring 0.43 mm. The quantity and size of tumors may give the Oncologists an indication of how extensive the spreading of melanoma cells in her blood is. Removing the axillary lymph nodes was the last available surgical step in trying to deter distant spreading.
MD Anderson called today to pre-register. Pathology reports and PET Scan results are being forwarded to them. They will use that information to determine which group of doctors to shedule her with. (UPDATE: MD Anderson consultation is set for Wednesday 3/31. Next local oncologist (Dr. Xiong) appointment is Friday 4/9)
Follow up with vascular surgeon has been rescheduled for Monday 3/22 awaiting drainage to reduce to less than 30cc per 24 hours.
Erica's second night of rest after surgery was much better. She described her pain this afternoon as a 5 on a scale of 1 to 10 (she described as 9 in recovery area after surgery), which I must say she tollerates very well. She had some nausea this morning and was sick one time, probably from the pain pill doses overnight without food. Drainage remains consistent at 100cc per 24 hours. Follow up appointment with surgeon will probably be postponed until Monday 3/22 as the drainage needs to be below 30cc per 24 hours to have drain tube removed. She is eating well and drinking a lot of fluids.
Axillary lymph node disection was performed this morning by Vascular Surgeon Dr. John Crawford. The surgery took about an hour and a half. We arrived at the hospital at 7am and left about 1:45pm. The doctor reported the surgery went well. Other than two lymph nodes appearing inflamed everything else was normal. There's a drain tube installed to drain the fluid from the area. Pathology report from biopsy is expected by 3/17 and the doctor requested a follow up appointment for 3/18 if drainage is below 30cc in last 24 hour period, otherwise the follow up will be delayed until 3/22.
Initial Oncologist appointment confirmed interferon alpha 2-b as only option for treatment. Our body naturally creates interferons. The treatment is designed to dramatically increase the level of interferons in the blood by using synthetic ones. The interferons work in conjunction with blood cells to supercharge them in the fight against cancer cells circulating in the blood. Because of the lymph nodes testing positive for cancer cells the likeliness the cells have entered the blood stream is very high. Interferon alpha 2-b treatment is the only one that has shown any consistent results with melanoma. The treatment statistically offers a 10% better chance that an internal tumor recurrence will not occur. The side effects are many and the treatment lasts for a year.
Extensive research led to the following items becoming a focus in my overall nutrition:
- Vitamin D3 2800iu per day
- Vitamin C 1000mg per day
- Womens Multi Vitamin per day
- Omega-3, EPA, & DHA through Fish Oil 1200mg per day
- Acai Berry Extract 1000mg per day
- Green Tea Extract 315mg per day
- Garlic 1000mg per day
- Vitalica 30 mg (sulforaphane glucoraphanin) same cancer fighting substance found in broccoli sprouts
- Foods: green leafy vegetables, broccoli (&sprouts), red and green peppers, carrots, asparagus, avocados, bananas, red grapes, blueberries, and red raspberries
My plastic surgeon (Dr. Robert G. Anderson) recommended a drug that has been shown to have immune boosting characteristics. Low dose Naltrexone is a drug that has been in use for many years in treatment of drug and alcohol addiction (50mg). It has been found that a much lower dose (4.5mg) taken once daily before bed can produce significant positive results with many diseases including cancer. The drug blocks endorphins from being secreted for several hours and as it wears off a surge of the endorphins are released. The endorphins are directly tied to immunity activity and in theory creates a surge or boost in immunity activity during sleep. This is an 'off label' use of the drug as it has not been FDA certified for this particular use. The drug will probably never be certified as such because the clinical trials are so expensive to complete and the drug has been off patent as a generic for so long that no drug company will spend the research dollars when in the end the new use would still be a generic that could not be patented. The main group of doctors supporting the use and many benefits of low dose Naltrexone maintain a website at www.lowdosenaltrexone.org. Began taking low dose Naltrexone on 3/13/10
A second opinion from another oncologist was arranged. Dr. Henry Xiong (oncologist) has 5 years of experience with MD Anderson heading clinical trials and is one of the medical directors for The Center for Cancer an Blood Disorders www.thecentertx.com. His feedback was candid and he reaffirmed many of the things we already knew. He gave a referral to MD Anderson to be seen by their melanoma specialist. The visit to MD Anderson is to explore any potential clinical trials that may take the place of interferon treatment or be used in conjuction with it. The current risk is having a tumor grow in an internal organ such as the brain or lungs. There is no treatment for such a tumor other than removing it if an operation is possible. Dr. Xiong stated, with interferon treatment, the 5 year outlook to be recurrence free is approx 70%.
Axillary lymph node dissection surgery is scheduled for the morning of 3/15/10 with vascular surgeon Dr. John Crawford at Harris Hospital, Downtown Fort Worth. Recovery is expected to be similar to previous surgery which was about 2 weeks. They are trying to arrange the appointment with MD Anderson after recovery but before the next appointment with Dr. Xiong on April 9th. That follow up will be to discuss MD Anderson feedback and make a decision on additional treatment going forward. The biopsy that will be performed on the dissected lymph nodes will reveal how many of the removed nodes had cancer cells in them. In theory the less nodes affected the better chance the cells have not spread to the blood. Although, we were advised the likeliness cancer cells have entered the blood stream is almost certain because of the single positive node in the prior biopsy.
In late 2009 my husband noticed a mole on the back of my left arm that he said looked a little funny. I intended to have the mole checked but several months passed before I realized (time fly's) the mole had become itchy and was bleeding a little when I scratched it. I showed it to my Dad (Dr. Dennis Lehman) at the end of January 2010 and he said I definitely needed to have it looked at.
I visited a dermatologist where he removed the mole and sent it to the lab for biopsy. Three days later I received a call informing me the mole was malignant melanoma. I was devastated with the news. My Dad was diagnosed with metastatic melanoma about 5 years prior, so I was already somewhat familiar with what I was facing.
It was recommended that I see a surgeon as soon as possible and I was referred to Dr. Robert G. Anderson. He's a plastic surgeon in Fort Worth, TX that specializes in removing melanoma from the skin. Two days after receiving the initial biopsy info I was in Dr. Anderson's office. He set the appointment for surgery to remove the tumor site and surrounding tissue down to the muscle about the diameter of the bottom of a coke can. The original tumor was 1.18 MM in thickness/depth and approximately 7 x 6 x 1 MM overall.
Melanoma is one of the most aggressive cancers with no proven or consistent treatment for cure. We all have cancer cells in our body throughout our lifetime but most peoples immune system can manage them. For some reason my immune system isn't capable. Lifetime risk for Americans having skin cancer is currently 1 in 70 people. Upon my diagnosis in February 2010 the clinical stage of my cancer was stage IIIa.
Harvey & Erica Braden
Journal of our journey with a Metastatic Melanoma Diagnosis. Erica was diagnosed Stage 3 in January 2010 and then Stage 4 in April 2018.