This blog is dedicated to Jim’s recovery from Melanoma. Come here to:
1. Find out where Jim is at on his journey towards healing. Present and upcoming doctor appointments, diagnoses, and treatments will be available to view. Also,
2. Check in here to find out how you might pitch in. Once we have a prognosis and a treatment plan, your support will be invaluable.
With love, Sylvie
→ 5 CommentsCategories: Personal
Dear Friends and Family of Jim Everson,
Thank you again for all your support, encouragement and outreach as Jim continues making progress on his journey toward healing.
He has completed his Interferon treatments in San Francisco and, at this point, I will no longer be providing updates on this site regarding his treatment, recovery and appointments. You are now encouraged to reach out directly to Jim in order to hear how he’s doing, offer well-wishes or just generally touch base, at 415/342-0255 or jimeverson@mac.com.
With love, Sylvie
→ Leave a CommentCategories: Personal
Happy Holidays, Everyone
→ Leave a CommentCategories: Personal
It’s been a long, long few weeks for Jim. Interferon’s a bitch, there are no two ways about it.
→ Leave a CommentCategories: Medical · Personal
→ 1 CommentCategories: Medical
As you might remember, Jim first had a PET scan in September. Among other things, the results showed a small nodule in his right lung and possibly in the left side of his neck. Jim had another PET Scan on 11/10 to see if there has been any shift in these two areas since surgery. On Monday 11/17 Jim met with oncologist Adil I. Daud at UCSF to go over the results of Jim’s second PET scan. We learned that the nodule in Jim’s lung has increased in size. Dr. Daud does not seem overly concerned since the nodule is not behaving like a Melanoma and the size increase (from .8 to 1 cm) is such a small increment. Nevertheless, Jim will get a biopsy of the nodule before beginning Interferon to rule out Melanoma and Lung Cancer. (It could be a fungi or an infection of some sort)
I’ll keep you posted when we have more information. Thank you for everything.
~ Sylvie
→ Leave a CommentCategories: Medical
A reminder that the Dinner Angels calendar is in the right-hand column under Community. Click on Calendar ☞ Dinner Angels to see the available dinner drop off days for Jim.
To help beat the side effects of the radiation that began yesterday and Interferon treatments which start in a few weeks, Jim could use all of the nourishment he can stomach. Send me an email if you’re able to deliver to 705 Scott Court #A in Novato, CA 94945.
I am grateful for the generosity of our community who give their time and good tastes. Thank you all!
x Sylvie
→ 2 CommentsCategories: Medical
The following notes were taken by Isae Wada, who accompanied Jim during his first appointment with Adil I. Daud at UCSF.
REVIEW/PROGNOSIS
Dr. Daud started the meeting by reviewing Jim’s history — the discovery of a swollen lymph node, followed by tests and surgery – and then proceeded to outline his treatment options.
He staged the cancer at IIIB, rather than IIIC (a little bit of good news!) and said at this point Jim has a 50-50 chance of the disease recurring. The Interferon is designed to reduce the systemic (overall) risk while the radiation is designed to reduce the rate of local recurrence (in his neck/head area), where the cancer is most likely to come back, if it were to return.
TREATMENT
Dr. Daud recommended starting interferon immediately following 2-3 weeks of radiation, which is to start this week. He said in major clinical trials, Interferon has been known to reduce the rate of recurrence by 20-30%, which is significant with a IIIB diagnosis. The first month of Interferon is the most intense part of the treatment. It starts with one month of Interferon administered in-office — 5 days per week (M-F) about 2-1/2 to 3 hours per day, and side effects that are the most acute. This will be followed by a longer period (11 months) of sub-cutaneous injections that are self-administered at home; these are about 1/3 the dose of interferon as the first month and accordingly the side effects are considerably reduced.
For the first month, Dr. Daud offered the following advice. Because Jim is likely to feel worse after receiving Interferon, the optimal schedule would be getting treatment late in the day, so he can return home afterwards, eat something and then rest. He proposed getting to the Dr’s office around 4, allocating 1-1/2 hours for fluid intake and an additional hour for the Interferon, as well as the administration of drugs designed to reduce side effects such as Benadryl (to reduce itching), Compazine (for nausea) and Tylenol (for aches and pains).
The side effects are considerable. Of patients that receive treatment, 1/3 tolerate it fairly well, another 1/3 show moderate symptoms and the other 1/3 exhibit severe symptoms. Moderate to severe symptoms include: flu-like chills, aches and pains, nausea, fatigue. Patients can also experience depression, anxiety, panic attacks and can even be delusional. It is VERY important that Jim and his support network keep an eye on the possibility of depression. I did ask the question of how does one discern the difference between feeling crappy and “blue” because you are experiencing the usual side effects of interferon versus slipping into depression; there’s no good answer except that we need to keep watch on this possibility and talk about when Jim is feeling despairing. Dr. Daud said he would contact Jim’s psychiatrist to talk to him about this as well.
Support/Reducing Side Effects
Regarding the Interferon appts, Jim will be able to drive himself to the Interferon appointments if necessary but he should NOT drive himself home. So he will need help with this on a daily basis for the month of intensive treatment.
To help reduce side effects, Dr. Daud said Jim would be helped by doing 20-30 minutes of light exercise per day (walking, cycling, etc) and center his diet around staying hydrated with fluids of every sort: soup, Gatorade, smoothies, pudding, nutritional supplements such as Ensure – pretty much anything that contains fluids and ideally has lots of both nutrition and calories. Essentially, if Jim isn’t going to the bathroom at least every 2-3 hours, he’s not consuming enough fluids. It also would be helpful to reduce or eliminate caffeine.
When he’s getting Interferon, Jim is particularly susceptible to infections, diseases, contagious illnesses, which means it’s very important to limit his exposure to anybody who has a cough, cold or flu – adults and children alike. It is not unusual to experience a mild fever with Interferon, but Dr. Daud and his nurse Michael want to know if Jim’s fever gets above 100.5 degrees or if he gets a “productive” cough, as well as a host of other symptoms. To help minimize the risk of getting sick, it was suggested that Jim wash his hands regularly, use antiseptic wipes/gels and make sure that those around him, especially children, wash their hands.
ONGOING
Ongoing scans throughout treatment and afterwards are aimed at monitoring for the possibility of recurrence. After 5 years, we can be “quite confident” that Jim is cancer-free, according to Dr. Daud.
MISCELLANEOUS
Clinical trials
The only trial Dr. Daud offered was one that involves the drug GMCSF, aimed at helping patients with advanced melanoma who were not doing interferon because of pre-existing conditions that are contra-indicated (e.g., depression)
Chinese medicine
No opinion on Chinese medicine and herbal supplements except to advise refraining from initiating any supplemental therapies until AFTER the month of intensive interferon is complete.
Pain management
Dr. Daud said Jim’s sensations would not return to normal for six months. He gave Jim a new prescription for Oxycodone which doesn’t present the risk of liver damage if you take too much.
Lung
The spot on Jim’s lung is not suspicious in and of itself; we are just keeping an eye on it because can’t rule it out since Jim has cancer.
→ 1 CommentCategories: Medical
11/11/08 • 11:30 a.m. >Adil I. Daud at UCSF Follow up appointment to r PET SCAN images
11/10/08 • 11:30 a.m. - 3 p.m.) >UCSF Imaging Center for PET SCAN review spot on lung and activity in left side of neck (discovered in first scans taken 09/05/08)
11/06/08 • 1:30 – 3:30 p.m. > First radiation treatment at UCSF Department of Radiation oncology. Will be joined by Phil Bossant
11/03/08 • 8:30 a.m. >Oncologist Adil I. Daud at UCSF to go over diagnosis, prognosis and future treatment, therapies. Will be joined by Isae Wada
11/03/08 • 1: 45 p.m. >Radiation Oncologist Sue S. Yom at UCSF to teach other staff how to administer Jim’s treatment.
10/30/08 • Radiation Oncologist Sue S. Yom at UCSF to map out exactly where radiation will occur on Jim’s head.
→ 2 CommentsCategories: Medical
Up until a week ago, Jim was doing pretty well recovering from the October 10 surgery. But the last week has been difficult for him. A burning sensation began in all areas where surgery was performed. This morning he experienced the worst pain he’s felt yet. The burning is apparently caused by fluid build up – typical after node surgery – and will eventually subside; to be absorbed by the body. Through it all, Jim’s spirits have been remarkably positive.
Jim went to see Steven J. Wang yesterday, hoping for some relief from the pain. He was told that he’ll need to tough it out. He also met with radiation oncologist Sue S. Yom and between the two doctors he learned the following:
- The size of the larger node removed was 5 cm.
- The staging of Jim’s cancer is IIIC.
- Melanoma doesn’t respond to radiation like other cancers. Jim’s radiation treatments are expected to be intense and will grow the bald area on the right side of his head and darken the pigment of his skin permanently.
Because of the serious implications of Jim’s staging, we’ll need to expedite all treatment and potential support therapies. More on this soon. Your support makes all the difference.
Send Jim your love. I think he could use it today and every day for awhile…
Hugs, Sylvie
→ 1 CommentCategories: Medical
Jim saw surgeon Steven J. Wang this afternoon to have what we’ve come to call his pork bun removed. A special bandage was actually sewn onto the skin above his right ear where Jim required a skin graft. Dr. Wang says that in healing, the higher the percentage number, the better. Jim’s skin is taking 100%.
The pathology report became available today:
26 nodes were removed and of these, 2 contained cancer. Jim is already expected to begin Interferon treatment in early November. Due to the size of the larger lymph node (the surgeon had never see one as large) and the fact that more than one node was affected, Jim is now an ideal candidate for radiation as well. More later…
→ Leave a CommentCategories: Medical
Jim’s surgery was a great success! The doctors removed the cancerous area above his ear which was replaced with skin from his right thigh. Surgeons then went into Jim’s cheek, neck and collarbone area to meticulously remove all suspicious matter. We will receive a pathology report with more information in 10 days. (Melanoma pathologies take longer than other cancers because of a special staining process involved.)
All doctors on Jim’s case report that they are very impressed already with his recovery. He’s expected to leave UCSF on Monday. Jim came into the surgery strong and with an excellent attitude and I’m certain this will pull him through the next year.
Will keep you posted…
x Sylvie
→ 6 CommentsCategories: Medical
After Friday’s surgery, Jim is going to require at least a couple of weeks to recover. Anyone who’s got the skills and time can help Jim by supplying a dinner. To be a Dinner Angel, look in the right-hand column. Under COMMUNITY click on the Meals Calendar link. See which day is open for a drop off and shoot me an email to let me know when you’re able to deliver to 705 Scott Court #A in Novato, CA 94945.
Thank you for everything.
Sylvie
Jim writes: Here is a list of my food preferences. I never met a meat I didn’t like. My favorites? Roast lamb, followed by pepper steak, and then a good ol’ cheeseburger and then a juicy polish sausage. (Not in one meal of course, unless Ariel is visiting.) I prefer brothy (soy or chicken based) soups to creamy soups. Usually. My favorite? Jocelyne’s Bean & Chard Soup with a bit of hard cheese on top. Heaven! Dark leafy vegetables like chard, kale, and broccoli. Nuts nuts nuts. Love em. But not many tree nuts which give me canker sores. Peanuts, almonds, cashews, yes. Walnuts, pecans, no. My rule? If it is a bumpy nut, I stay away from it. Smooth nuts are good. All salads are great. I’m not big on dressing (maybe an occasional blue cheese) but mostly I like only lemon juice on salads. There is no meal that an onion can’t improve somehow. I love desserts, but am substituting sweet fruits for pastries and cakes right now. A bowl of crisp grapes or sweet berries will suffice for dessert. I will not give up an occasional ice cream, however. But I’m cutting WAY back. Bread. Yum. I like the form and texture of baguettes best. Sliced healthy breads are fine too, but I don’t eat them as often. Beans? Mostly only eaten in a burrito or similar dish. Rarely as a side dish on their own. Cheeses? There is no cheese I will not eat. Food of the gods. One of my clients has recently sold me on the benefits of uncooked (raw) foods. I’m convinced. I’ve been eating much more raw foods lately. They taste great. Juices. Smoothies, etc. All good as long as the sugar content is low. Snacking? I love popcorn (a whole grain!) and for convenience plus no harmful ingredients, I have actually found a great microwave brand: Orville Redenbacher’s Tender White. No Trans fat and no added ingredients. And it tastes awesome! Roasted potatoes (preferably cooked with the meat, like a roast chicken or pork tenderloin. Yum yum) And nothing beats garlic mashed potatoes. All sea food. I love all of it. and Sushi? Yes. Okay okay, but what do I avoid? overcooked vegetables creamy sauces complicated dishes with more than 5 ingredients Anything that looks like it might be a favorite at a midwest family reunion. (Pre-frozen breaded shrimp, iceberg lettuce with thousand island dressing, and ambrosia salad for dessert. What are you trying to do, kill me?) My guilty pleasure? Salt. If I have to cut this out, I will be sad. It makes all good foods gooder. If no one was looking, I might be tempted to put it on a chocolate cake.
→ 2 CommentsCategories: Medical · Personal
Hi Everybody,
I wanted to take a moment to say thank you for all of the wonderful calls, emails and letters I’ve gotten. Your kind words make a HUGE difference as I get set up for my treatment. I also wanted to let everyone know that as of today, I feel great, and I have felt this way for a long while. I’m continuing to eat well and get plenty of exercise.
I don’t quite know what to expect in the days and weeks ahead. I’ve simply been filling my time as I normally do, going to work, playing with Oliver and Amélie, drawing comics and trying to be a better cook. I just don’t know how to think about what is around the corner for me. The few people I’ve talked to who have been on this path have all had wildly divergent experiences. So I’ll just take it one day at a time.
Just know this, my spirits are high, my health is excellent, and I’m finding everything around me to be very funny. I’ll talk to you soon.
Jim (as told to Sylvie)
→ 2 CommentsCategories: Personal
Jim has an appointment with head + neck surgeon Steven J. Wang set for October 10. We’ll arrive at 6:00 a.m. to prepare for a 7:30 operation due to last at least 5 hours.
More as it comes in…
Thank you for your words of encouragement. - Sylvie
→ 4 CommentsCategories: Medical
Jim met with Mohammed Kashani-Sabet, M.D. this morning. After an exam to see if there are any more suspicious-looking moles on Jim’s body (there aren’t), he gave his analysis of Jim’ test results:
→ Stage III Melanoma
→ Lesion .85 mm deep (a thin reading for Melanoma)
→ Spot on lung found (whether cancer-related or not unknown at this time)
→ Activity on left node(s) in neck. (No uptake apparent on MRI scan)
…
Next Steps:
1) Surgically remove cancerous area above right ear. Skin graph probably not necessary.
2) Surgically remove cancer from node(s) on right side of neck. This will reveal how many nodes are affected and will determine whether cancer is stage IIIA, IIIB or IIIC. This information will also inform whether radiation, along with Interferon, will be part of the treatment.
2) Another PET scan will be done (to assess lungs and left neck as well as rest of body). Recovery from surgery can take up to two months.
3) Interferon treatment will begin and lasts about one year.
…
1:45 p.m.
Met with head + neck surgeon Steven J. Wang in the afternoon to go over surgery details. Will hear from his office by end of day tomorrow to find out when in the next 4 weeks Jim’s surgery will take place.
…
More when I hear from Wang’s office.
-Sylvie
→ 3 CommentsCategories: Medical
Use the comment button below right to send a quick word to Jim.
→ 11 CommentsCategories: Personal
I’ve been phoning Mohammed Kashani-Sabet, M.D. to try to get Jim in sooner than his appointment scheduled for Monday. However, I’ve just learned that the Melanoma Board at UCSF meets every Monday. What this means, according to ENT Michael Shapiro, M.D. is that Jim will be at UCSF for the whole of Monday:
– Meeting in the morning with Dr. Kashani
– In the afternoon the board will review his case
– Jim may meet again with Dr. Kashani after the board meets to review their consensus
It wouldn’t make sense for Jim to go in any sooner than when the board meets. After all, the latest information on approved medicines and experimental treatments for Melanoma are being developed and are available through the board at UCSF. And we want the best minds working with Jim.
We’ll have a lot more information for you by the end of the day Monday. Stay tuned…
with love, Sylvie
→ 2 CommentsCategories: Medical
08/26/08
Biopsy on lymph nodes in neck
09/03/08
Michael Shapiro, MD (ENT) gives diagnosis: Melanoma
09/04/08
Dr. Shapiro removes part of skin lesion above right ear for pathologist at Marin General Hospital.
Bring specimen to MGH.
Blood test at MGH.
09/05/08
MRI Brain Scan
MRI Neck Scan
PET full body scan
09/06/08
Blood Test Results:
- Excellent. No Melanoma in liver
- Specific Diagnosis: Superficial Spreading Melanoma
09/08/08
MRI Brain Results: Negative. No Melanoma in brain.
09/15/08
9:30 appointment with premier Melanoma Specialist Mohammed Kashani-Sabet, M.D.
→ 7 CommentsCategories: Medical
