Oncologist appointment and more lymphedema

I saw my oncologist yesterday and she is very, very pleased with the improvements she saw in the areas affected by the lymphedema. She's so pleased, in fact, that I don't need to go back for eight weeks.

She was especially pleased with the changes in colour and texture on my affected breast: it's no longer an angry red colour, the tissue can be moved from side to side and is no longer "stuck" to the chest all, and the skin is less bumpy in texture. I guess the changes that I thought were just the morphea were actually from lymphedema caused by the morphea. The morphea made the skin much less elastic which meant that the lymph fluid couldn't move as easily. Eventually the lymph fluid just built up in the breast and backed up into the arm.

I wish I'd known more about lymphedema because then I'd have asked to see the physiotherapist early on. She could have worked on the skin and possibly prevented this whole lymphedema mess. Unfortunately, it occurred to no one that the morphea could cause lymphedema problems because morphea is rare and lymphedema is not well-understood. The lesson here is that if you've had radiation to a body part and you develop any kind of skin condition on that part, look out for lymphedema.

My oncologist is also sending me to Princess Margaret Hospital in Toronto where they're doing this COMPACT (Community Oncology Molecular Profiling in Advanced Cancer Trial) clinical trial which is based on this IMPACT trial. From what I understand, they're looking for genetic mutations in specific cancer types so that they can eventually develop therapies targeted at the effects those mutations cause. The advantage to targeted therapies or treatments is that they're much less toxic to healthy cells and they're very effective.

This clinical trial doesn't require much of anything from me (just a visit to Toronto - everything else happens behind the scenes) and my participation will help in the future. I know that targeted therapies based on this trial are many years or decades away but if the information isn't collected now, those therapies will be even longer in coming. So I'll be participating.

I also asked for a referral to the dietitian on staff - my psychologist had suggested this in my last appointment - and they're setting that up.

I think that's it for yesterday's appointment. In other news, someone had asked about what my arm and hand wrapping looked like so I took a few pictures with my phone with Gozer in the background. Enjoy!

As much of my arm as I could get. The wrapping goes up to my armpit. The wrapping at the very top is a different colour because it's actually a different product with higher compression. We used leftovers to wrap my arm and since it's important to get the wrap good and snug at the top (or else it starts to slide down and that's very uncomfortable), using the higher compression wrap is ok there.

My outer forearm and hand on Gozer. The thing you see at the very top of the picture is a purple hippo squeaky that Gozer is holding in her mouth while she sleeps.

My inner forearm and hand. The creases you see are from the edges of the inner comfort layer wrapping (and sometimes from the outer layer). Both wrappings spiral up my arm from my hand and when I rotate my arm or hand the edges of the wrappings deform a bit. 

My hand. There's a bit of bulk over the fleshy part of the thumb which makes it difficult to use the hand. There's extra bulk over the wrist, too, but I needed that to have even compression around the wrist. Because my wrist is narrow it was hard to get the comfort layer tight enough (but not too tight!) around the hand, wrist, and forearm to provide much-needed compression on the wrist. There's extra comfort layer around the wrist which makes wrapping the area sooooo much easier.

My palm and hand. My fingers are coming to get you!

Oncologist appointment

I saw my oncologist this past Friday. The best news is that my tumour markers are still holding steady at a nice, low 34. Yay!

However, my oncologist was quite concerned about the lymphedema I've got. It's still in my left hand and arm and it hurts when I try to do certain things like put my hand flat on a hard surface and straighten my arm, or bring my hand to be perpendicular to my arm, or if something puts pressure on a part of my forearm.

Then on Wednesday I freaked out a bit because my underarm felt strange. If I raise my bent arm to shoulder level, the skin just at the front of the skin is all dimply. If I raise my hand above my head and straighten my arm as much as I can, there are three ropey things in my underarm.

My oncologist looked at all this and told me that my breast (this is the one with morphea) is full of lymph fluid, as is my side, and those ropey things are lymph vessels that are showing up because there's so much fluid in the whole area (this phenomenon is known as "cording"). Of great concern to her is the fact that my morphea breast is pinker than usual; apparently when fluid builds up and sits there like this, a cellulitis infection can show up and it starts with pink skin. I'm to watch for pain in the area and/or a fever and they show up, I'm to head to the emergency department immediately.

Apparently the cancer center has a physiotherapist who specializes in lymphedema and my oncologist is referring me to this person. She's hoping to get me in urgently because of the cording and swelling everywhere. She also wants to see me in four weeks instead of our usual three months because if we can't get the fluid moving we need to scan to figure out what's causing the blockage.

Hopefully I can get in to see the physiotherapist and we can get the fluid moving so that I can use my arm and hand again.

My skin thing has a name

The changes to the skin on my left breast are definitely morphea, a type of scleroderma. The biopsy sample was good: it was 0.5cm by 0.4cm and went down into the fatty tissue below the derma, or skin layer. There were areas of sclerosis in the derma that went all the way down into the fat so the changes are quite extensive.

No one really knows what causes morphea. It's thought to be an autoimmune disease and it shows up as a long-term side effect of radiation. The cases I've seen have shown up much sooner than 11 years after radiation like mine did. I can imagine a scenario where my immune system was wonky because of the cancer and sarcoidosis and the denosumab just added enough strain to my already-weird system for the morphea to take hold.

There aren't really any treatments for morphea; pretty much everything is done off-label on an experimental basis because nothing really works. The best treatment is a systemic one - I think it's cyclophosphamide, a type of chemotherapy, and it works by suppressing the immune system - but my system is fragile enough that we don't want to introduce a new systemic treatment until or unless we have to do it.

There's another topical treatment I could do but I'd need to see him every two weeks and there's no guarantee it will work. I don't think he thinks it's worth trying, partly because I'd have to travel so far. If I lived in Oakville, things would be different. Before I make a decision one way or another on whether to try this treatment, he wants me to talk to my oncologist and family doctor to get their thoughts. So we'll see. I'm not convinced that it's worth trying to get rid of it, especially since it's not life-threatening or anything. Besides, if chemotherapy clears this thing up, it'll get cleared up when I'm the "lucky" recipient of chemotherapy for the cancer - whenever that happens (which hopefully won't be for quite some time yet).

Oh, and the dermatologist thinks that the incision is healing up quite well. He told me that sometimes infection will take hold and be tough to get rid of so if there are any signs that the infection is returning, I need to get to the ER right away. I'll definitely do that: I don't want to wind up in the hospital with IV antibiotics.