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.

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.

One more month down…1/4 of the way through!

We’ll we’re still slogging through the treatment and haven’t missed an injection yet.  We still take things pretty much day to day as far as planning and our expectations of what we can do.  I think we’ve been lucky to have such an active set of weekends.  Most nights still end up with me in bed by 8 though, it almost feels like having Mono with a Flu, naps and soups are usually the only consistently sounding good things.

A couple of good days in a row and it feels like the treaments not so bad and we can finish out, but then you get a couple bad days where you wonder how you can stay on it.  Luckily Melissa has been a great support and our works have been great with all the scheduling.  I go in about once or twice a week still, the Physical Therapists are still working on my leg and have signed me up at a gym.  I guess you need to lift weights to really make headway with Lymphedema.  But the day they gave me the gym slip I rolled my right ankle playing basketball.  Talk about the worst place to have that happen, I thought the swelling in that area was finally settling down and now it looks like it’s back to square one and wrapping my ankle.   If anything it’ll be a good test to see if my ankle can manage to get back to normal without some serious work.  I’m hopefull but the PT’s just shake their heads..

Due to the insomnia and other side effects of the drug the Doctors decided to cut the dose a bit and we’ll see over the next few weeks how much of a change that is.   Since it hits everyone is so differently it’s tough to know what to expect and if it’ll actually change anything, also since the drug’s effects stay with you for 2 weeks it’s not an immediate effect.  Oddly just the opposite happens, at first your body misses the full dose and the ramping up of the immune system and so it suffers a form of withdrawl.  The Doctors say I’m doing well overall though and are glad to see my liver counts come back to normal.  The Red and White Blood cell counts are down though and I guess that is to be expected with Intron.

Other then that I’ve just been trying to get in for some high tech mole mapping.  First they photograph you all over to get every inch of skin, (good thing I’ve lost more weight) and then analyze it with a computer.  Should be interesting except that few Dermatologists do it and those that do are booked clear through January.  At least I’ve been a pain enough that they agreed to get me on the emergency list for mapping.  With any luck I’ll be posting some naked pictures soon.  Hey we have to get this site’s hit count up somehow!

First Month Self Injection Checkup

Today was my check up with the Oncologist at SCCA to evaluate the first month of self-injections.  That’s 2 months of Interferon down and 9 months and 3 wks more to go.  Thank God for insurance because this stuff is not cheap. I went in with my laundry list of side effects I’ve been experiencing and talked for some time with Dr. Thompson and Jon Smith, the head Melanoma nurse who is quite an expert on the side effects.

Due to some of my complications they left it up to me if we were going to continue with the same dose, continue with a lower dose or to quit for a week or two.  I decided to keep on the standard treatment but was referred to another doctor for my insomnia and nervous energy.  The blood tests came back normal, which is good since Interferon can really damage the liver and kidneys. They almost had to stop the Infusion phase at one point because my liver was doing poorly.  So still no alcohol for the whole treatment!

They also weighed me and I’m only down 20 pounds, which is about what they expect.  They warned me though that most people gain the weight back pretty quickly after the treatment and you start to eat normally.  I actually think that I’m at a healthier weight now so I’ll have to be careful. So far the only foods that really taste good are fruits, veggies and Melissa’s smoothies. I still can’t believe that coffee tastes so bad to me. Now I know what it is to be a Seattleite that doesn’t drink java and it’s not pretty.

I’m almost through with my physical therapy visits for the Lymphedema in my leg and was recommended to a massage therapist to continue working on the lymphatic swelling. Basically, the Lymphatic Drainage Massage assists the body in creating new Lymphatic pathways to replace the ones that were severed during surgery. Once a day I do brushing massage along the lymphatic system to assist these new pathways. I’ve also been good about wearing my “compression garment” (i.e. my $90 thigh high stocking) and the swelling has been kept in control. Luckily I’ve been able to avoid any serious complications with this because it can really be a life long problem for a lot of cancer patients who have to have any type of Lymph Node removal surgery. Having full use of my leg after the second surgery was a really big concern for me and so far my biggest problems have been a little nerve damage and some minor pain and stiffness that builds after long periods of sitting.

Immunotherapy Treatment

Back in June we settled on the Melanoma Oncologists at the Seattle Cancer Care Alliance at The Fred Hutchinson Cancer Research Center. It is a great place that also treated my cousin Casey for Leukemia and they were able to work wonders with him. (Good Luck Casey keep amazing us all!) Dr. Thompson there is a leading doctor in the Melanoma research field. They started with a CAT/PET scan to look for any tumors and didn’t see anything so the good news is continuing. We’re so glad we caught my mole at an earlier stage! Those things grow so quickly it’s important to stay on top of it, which is why I have dermatologist appointments every 3 months now.

Melanoma is one of the rare forms of cancer that your body will fight off, it just needs to be primed for it. The standard treatment for my level of Melanoma, IIIa (of IV), is Interferon Immunotherapy. This is the chemical your body produces when you have a flu and it causes the “flu-like” symptoms. Actually the list of potential side effects while your on the drug is quite long but are not permanent and they shift so that over time your are affected by different things. Carolyn I don’t know how you do it, Interferon is a real challenge and few Melanoma patients can complete the full treatment.

I had one month of going in daily and getting hour long infusions, now I’m doing self injections 3 times a week at half the dose. The injections are similar to a diabetic shot. They recommend 11 months of self injections, thankfully the insurance has been very helpful as the drug is very expensive. We also went to see a Naturopathic Oncologist to see if there was anything he knew of to help the symptoms and have looked at Gilda’s Club Seattle and other cancer support groups.

The doctors and nurses have been amazed that I have been able to continue working as much as I have and have even been exercising by playing basketball at lunch with my co-workers. It’s great to be able to do that to help fight the fatigue, which has decreased since the Infusions ended. Other symptoms have been creeping in though and it has really created a day by day or even hour to hour focus for Melissa and I. The lack of appetite and nausea are some of the most difficult regular complications.

Other then that things have been going well and we’re anxious to see my family at the Ludlow family reunion and thank them for all their prayers and support.

First Week of Interferon Infuson…urgh the Flu!

First Week of Infusion - June 16th, 2008

The fun starts quickly with Intron-a and the list of potential side effects is long. (Poster size long) Here’s a small sample of the most common ones. I think I have had them all in groups and rotating order.

From the Warning Label “The most frequently reported adverse reaction was fatigue which was observed in 96% of patients. Other adverse reactions that were recorded in >20% of INTRON Atreated patients included neutropenia (92%), fever (81%), myalgia (75%), anorexia (69%), vomiting/nausea (66%), increased SGOT (63%), headache (62%), chills (54%), depression (40%), diarrhea (35%), alopecia (29%), altered taste sensation (24%), dizziness/vertigo (23%), and anemia (22%).”

Dec Update: Yep, had them all. They said I’ve had some of the most symptoms in one patient, plus a couple more that weren’t listed above.  I guess thats good since they say the worse you feel the better it’s working.