Chemo Side Effects or Mold Allergy?

[Mtngrl]

I live in a third floor apartment in an old four story building in Boston. Two weeks ago, a large pipe in the unit above me burst and water started pouring into my bedroom. It was a holiday weekend, but fortunately both I and my two roommates were home, and we sprang into action quickly.

The maintenance man came and got the water shut off, but not before my ceiling, walls, and much of the floor got soaked. There was one gushing waterfall directly under the break, and numerous other leaks. Water also got into the hall and the bathroom. My roommates' bedroom appears to have been spared. Other units were also affected. Water went all the way down to the basement.

It's Boston in the summer. It's hot and humid. And the landlord did nothing to dry out the walls or dehumidify the rooms.

I got a dose of Abraxane Monday, July 13, 9 days after the flood. Tuesday I didn't feel too bad, but Wednesday night I developed severe joint and muscle pain and intense neuropathy. I hardly got any sleep. Last night was even worse.

I called my oncologist this morning, and the NP prescribed me a painkiller. I had to go by bus to retrieve the paper scrip and take it to the pharmacy to get the prescription filled. I felt frail, exhausted, and weak. My calf muscles were giving way as I descended stairs. Then when I got home over 2 hours later I hung around in the kitchen for about another hour. When I got around to thinking I should take a pill and go lie down it dawned on me that, though I was not ALL better, my pain level was greatly diminished, as was the neuropathy.

I am extremely allergic to mold. In the past couple of years I've slept in two other buildings that I suspected had mold contamination, and, come to think of it, I had that same muscle and joint pain.

My idiot landlord is downplaying the situation, so much so that I called the City's Department of Environmental Health and had them open a case file on it. We're moving out next month, and he wants to find new tenants, so he just wants to repaint and call it done. I've gotten mold remediation done before, and that's not how it's done. First you test the mold levels. Then you have to take out all the affected plaster, insulation, etc. down to the bare studs, dry it, treat it, test again, and put up new drywall. That's not a two-day project, and it's not cheap. And it can't be done in a room full of furniture, clothes, bedding, etc.

I'm allergic to anti-fungal agents, including chlorine, and also dust. And, of course, there's lead paint. I can't be in the apartment while that's going on. And he can't just patch the holes, slap on some paint, and pretend nothing happened, though he's already done that in some of the other units.

The front part of the apartment didn't get wet, and there's good ventilation, so I'll start sleeping in the living room.

I'm happy I figured this out. I really want this Abraxane experiment to work out. And it was puzzling to have such severe side effects so fast. The last time I was on Abraxane I found it pretty easy to tolerate.

Sorry for the novella, but my point is I tend to blame everything on my cancer or my cancer treatment. If I hadn't had the Abraxane dose at the beginning of the week, I'd have realized earlier that I was reacting to the mold. I bet there's quite a colony above my ceiling and behind my walls.

[Carol Ann]

I'll bet there is too, Amy ... especially with all the heat and humidity, that mold is multiplying fast and furiously, trapped behind those walls.

Glad you figured this out, and you have a dry and ventilated place to sleep.

WHY do things like this happen during chemo?! I had rain water coming through the wall above my headboard during my second round of chemo; the rain gutters were too small and the water was sloshing in under the soffits. We had to move everything out of the bedroom and sleep on an air mattress while they repaired it, dried out the wall, repainted, etc. Yes, it was ALOT more than a 2 day project. It took weeks.

Hang in there, my friend! This too shall pass.

Carol Ann

[DianaMK]

Mold is a terrible thing!! Your landlord should put you up in a hotel. Maybe you should contact an attorney.

[Mtngrl]

Tomorrow I'm going to get a respirator rated for mold, and wear it when I'm in the bedroom. I need to do some stuff in there, and I want to limit my exposure as much as possible.

The Department of Environmental Health might kick us out. If they do I'll insist that the landlord pay to house me. My roommates have a place they can stay, fortunately. But we need to be packing to move, too. I'm moving back to Colorado. Hopefully we'll still have access even if we can't sleep here. And we can probably pile all my bedroom stuff into our living room, especially if I box it up first.

What a mess!

[Mtngrl]

I have an update.

After 8 nights of sleeping in the living room, I noticed I was still waking up sick and getting better after going outside. I started sleeping on an air mattress on the balcony (which has a roof but no walls.) And I immediately started feeling much better. I had developed severe shortness of breath, especially while climbing stairs. I had to stop and rest halfway up the long stairway that leads from the street where I catch public transportation and my apartment building, which is on a hill. The shortness of breath resolved almost immediately.

Movers came August 5 and carted away most of my stuff. On the night of August 6 I took an overnight bus to Boston, and later on August 7 I went to Harrisburg to stay with relatives.

I should have taken my respirator with me. I woke up feeling ill on August 8, and had increased neuropathy in my fingers and toes. I began sleeping in a newer part of the house that's over a crawl space and not my cousin's admittedly moldy basement. I got another respirator and started wearing it most of the time I was inside. The room I was sleeping in had windows on three sides. I opened all of them and ran the ceiling fan.

The bathroom next to that room had three "air fresheners" in the tightly closed window. Smelling that odor made me feel ill. When the basement door was open I'd smell a strong smell of pesticides.

My cousin and her husband were very cooperative in trying to make their house livable for me. My best days were days we stayed away from the house the longest.

I went back to Philadelphia on August 15 and spent two nights there. I was having some symptoms, so I went looking for mold, and found a contaminated rubber bathmat in the bathroom next to the room I was sleeping in. It looked OK on top, but it had a luxuriant growth of black mold underneath it. I put on my respirator, disposed of the mat, and scrubbed the tub and tub surround.

Then I went to the Jersey shore. No noticeable mold, but workers were out on the beach constructing a handicap ramp and doing other work. I kept catching whiffs of diesel fumes. I still had some mild symptoms.

Then I found out about "Multiple Chemical Sensitivity." I've gotten contact dermatitis from various things (mostly cosmetics and sunscreen) since I was a teenager. When I was 23 I learned I was allergic to mold. I figured out in my early 50s that I can't be around chlorine or even come into prolonged contact with fabric that's been washed with chlorine bleach. I get hives, rashes, and weird-looking blotches on my skin. During a cleanup operation after a basement flood, I found out I also react to the spray-on antifungal they used to prevent mold growth.

Cologne, perfume, and other scented things can make me feel ill. Plug-in "air fresheners" and scented laundry products can give me headaches or migraines. I always use unscented laundry detergent, hand cleaner, hand lotion, and body wash. Recently I noticed burning and tingling in my hands and feet when I'm exposed to diesel fumes.

If you have an hour, watch this video about MCS. I'm not nearly as disabled as most of the people in the movie, but I'm getting more and more sensitive. It's possible that many of the symptoms I've been attributing to Herceptin (runny nose) or chemo (respiratory problems, shortness of breath, light headedness, skin problems, GERD) are caused or exacerbated by MCS. https://www.youtube.com/watch?v=aJuBuXXMaiA&feature=youtu.be

Now that I've figured this out, I can take steps to limit or avoid exposure.

You might want to go fragrance-free now.

Amy