New article on the benefits of weight lifting for Lymphedema

Not that I’ve been great about working out, I canceled my gym membership last month because I wasn’t using it. My doctor and the bathroom scale have been good at pointing out the lack, but exercise really does help anyone that has had lymph nodes removed. Most of the research on this comes from helping Breast Cancer survivors, but it’s the exact same for other cancers that spread lymphatically. I have been playing b-ball though and it’s really helped my swelling a lot over the past year. Not that you’d be able to tell from my 3-pointer though.

http://www.cnn.com/2009/HEALTH/08/13/weight.lifting.breast.cancer/index.html

Valentine by Alden

Our Nephew Alden made this for us. We had so much fun babysitting for him and his brother Gavin last night.  It is GORGEOUS! (this is his new word)

Happy Valentines Day!

Melanoma Links and Images

Here’s some good Melanoma Links and photos of what it can look like:

General Info at Wikipedia

Patients Information

American Cancer Society Melanoma’s Staging System

Here are some Melanoma images and a link to what to look for using the ABCDE method.

Dec CT Scan Results – All Clear

In mid-Dec I went in for a new CT scan (the PET was declined) as part of stopping the Interferon which they compared against the first one I had in June and everything looks good.  No signs of any tumors or anything which concerned the doctors.  Granted Melanoma can spread quickly even at the microscopic level and the recurrence rate is high for stage III patients, but things are off to a good start.  For now it’s a wait and see pattern of regular self checks and appointments with the dermatologists and oncologists.  The first several months to 2 years are the most crucial as the chance is much greater initially, then after several years it declines to something not too far off from an average person. 

I was also able to get in for Grid Photography finally which is a great tool for a dermatologist to use in comparing changes in moles over time.  Also since I get to keep a set of photos it’s also really good for my self checks.  If anything does come back the biggest help will be finding it and identifying it quickly.  The photo process involves taking 30 pictures of all the different quadrants of the body and is something like a clinical playgirl shoot.  <Insert comment here /> 

The Interferon effects are finally almost all wearing off, I still have some minor lingering issues and sometimes these can last for a few months but it looks like nothing will be permanent.  I had almost a month long series of colds as my natural immune system and white blood cells got back to full strength, at least they were real colds though and not the pseudo-flu I’ve had for months.  You can’t easily get sick while your on Interferon and it was a much different feeling (luckily one that didn’t involve needles).  I’ve never been so happy to get a cold as it marked the end of the treatment and was finally something my body could get rid of.

Thanksgiving Update

We’re back online, it only took a month and a half to get internet service at the new house. Not too bad actually, our old ISP told us we’d have to pay to dig a new phone trench to the house. Luckily before you could say ‘HelloClearwire’ Qwest felt differently about whose responsibilty it was and started right away.

For Thanksgiving we went back to Colorado for an important first family holiday without Ed and to see Meggan & Jon’s beautiful baby girl Macy. That was one bun that wanted to get out of the oven ASAP. There are some pictures of her on our Flickr account and lots more on Bug’s blog.   Here Lucy and Nessa are preparing with Melissa’s help to take an inappropriately adorned Conor on a creekside snipe hunt by the old teepee.   We always love spending time with these two trouble makers but need to make sure that he doesn’t get too caught up in their princess parties.  Poor boy, too many girl cousins.

We all enjoyed a big Thanksgiving meal and a great turkey day, the first I’ve seen that didn’t involve clay pigeon shooting off the back porch and possibly the last one at the old house. Although Luie’s new place does back to a golf course so I guess we can shoot golf balls out of the air? Have to check with the local police on that one, that is if they aren’t over there shooting too.  At least Hygeine Fire Dept won’t complain..

Hopefully you all had a great Thanksgiving too with lots of friends and family.  Now for Xmas with Melissa’s side of the family and our first guests in the new second bedroom.

Off of Interferon!! Chemical free since 11/3/08!

It’s true, 11/3 was my last shot (and yes we are Eastsiders now, contact us for our new address).  Due to Qwest’s phone issues we don’t have internet at home so the updates have been few these days.  We met with the SCCA’s  Dr. Thompson and RN Jon Smith last week and told them about the continuing roller-coaster ride of handling the symptoms and after a good discussion we all agreed to stop the program.  It’s been 5 months into it and I had been hoping to reevaluate at 6 months and to at least stay on until the 8th month.  But the majority of the benefit of interferon happens during the first month or two and the effectiveness declines over time.  Plus your body can just reach a physical point of exhaustion with the drug. 

The blood tests combined with the severity of all the different side effects were enough to concern the doctor, luckily we make detailed lists.  It seems like I’ve been continuing to have a wider range of side effects then most patients, although none were extremely strong like some patients have.  This should be good though since people that have an easy time with interferon likely are not getting the full benefits of its effects.  Around 5-6 months (and 2 months after lowering the dose by 30%) is when things are supposed to level off and begin to be more stable and long lasting issues can start to add to the possibility of them becoming permanent.  For me with a moderate diagnosis even starting the treatment was a big step and the doctor helped me see that continuing could outweigh the benefits.  Supposedly most patients that even start usually don’t make it past six months.

It generally takes up to a month to drain the drug from your system and big changes can happen in the first few weeks as withdrawal occurs.  The first couple days were fine I could feel my body adjusting to the loss of interferon, but the daily side effects were decreasing.  A week out and I’m experiencing a reoccurrence of side effects as strong or stronger than those I had while I was doing the injections.  Hopefully these will continue to lessen in frequency and strength, at least I feel better on most days both physically and mentally.  It really feels like a grey cloud is clearing up now that the drug is clearing out.

Dealing with interferon has been rough and it would be nice to see better results from the studies concerning its use, but we’re glad we went through with it.  We’re ready to try and move on once the side effects pass, we’ll get another PET/CT scan soon at the end of the treatment to look for anything new and will be active still with our dermatologist in looking for new or changing moles and also active with dealing with the Lymphedema.  But for the meantime we are still getting settled in the new place and adjusting to life as Eastsiders.

Eastside move and Interferon

Oh no, it’s true we’re almost Eastsiders.  After both working on the Eastside for some time we decided to save on the commute across the bridges and look for a new place.  The new house has hardwoods a nice deck and is walking distance from my office and closer to Melissa’s work too.  Moving has been a challenge since we’re both still not back up to full strength after the surgeries, but luckily we’ve been taking our time. 

Things with the Interferon have finally started to stabilize after lowering the dose in early Sept.  We might move the Oncology checkups to every other month since I’ve been doing better.  Though it’s still difficult on some days overall it’s been tolerable.  Two things that have helped my energy are switching the shots to be in the morning and taking more Melatonin.  Because I was having so many problems staying asleep I started taking the shots earlier and have actually been able to sleep at night.  For a while I was up at 2 or 3 a couple times a week.   Feeling like I have a mild flu during the day is fine trade for sleeping at night.  Also Dr Gignac recommended taking 20 mg of Melatonin before bed, mostly to help with the side effects but as a sleeping aide it’s helped a lot.

Biopsied Mole Benign!

Good News!  Brandon got his test results from Dr. Argenyi and the most recent mole biopsy taken from his back is benign. Now we are trying to get in for Grid Photography. All current appts are completely booked so we are on the waiting list. We’ll keep calling and calling them till we get in!  Through this treatment we’ve learned how important it is to be persistent despite our obstacles.

Day 100!

Today is Brandon’s 100th day of treatment! We celebrated with a Naturopathic Oncology Appointment at the Seattle Cancer Treatment and Wellness Center where we received some helpful guidance on symptom management from Dr. Gignac. Then over to Massage therapy where Brandon got his first official Manual Lymphatic Massage and lastly we attended a lecture provided by Fred Hutch Research Center on “Cancer Survivor Symptom Management” given by Dr. Mark Jensen. He covered how change in diet, increase in exercise, Cognitive-Behavior Therapy, and Self Hypnosis can improve your symptoms. It was a good day and we have more tools under our belt to help deal with the fatigue, insomnia, pain and stress this cancer has brought us. We are blessed to have so many great resources living here in the Northwest!

Dermatopathologist Appointment

Today we saw Dr. Argenyi at the UWMC Dermatology who specializes in pigmented lesions and dermatopathology.  Because of Brandon’s history with Melanoma he is at risk for new melanoma moles. The last Dermatologist we saw referred him to a Pigment Specialist since he has many dysplastic nevis, which are moles whose appearance are different from that of common moles. First a Resident Doctor gave Brandon a thorough exam, then Dr. Argenyi did another thorough check of his entire body with a Dermoscope. This is a diagnostic tool which is like a very high magnification lens with a built-in illuminating system to view of skin lesions not normally visible to the unaided eye. They marked 4 moles to watch and one to later biopsy.

Then they took digital photography of all 5 moles and one photo of his entire back and mapped the location of all the moles.  We will get the results back from the biopsy in about a week. The next step for monitoring Brandon’s moles is Grid Photography. Grid Photography will allow them to watch pigmented lesions and moles for change to catch any possible melanoma early and avoid biopies of moles which are benign.  After Grid Photography we will continue to see Brandon’s Dermatologist Dr. Newman in the next 3-6 months and in 1 year we will go back to Dr. Argenyi for more monitoring with the mapping and photography. We will continue to do Home Skin Check Exams to watch for any changes or new moles. We felt good after our appointment today knowing we are using all available tools to help prevent new melanoma.