Seeking answers

[mary colleen]

I really don't know what to think. My husband began a big downhill slide about 4 weeks ago, about 7 weeks after the end of brain radiation. He had recovered from the treatment to a reasonable degree, and was even planning to possibly go back to work after Labor Day. Around mid-August, he suddenly stopped having an appetite and lost 14 pounds. He became more confused and just generally much less functional, began to have balance problems, and over the last week has begun to have a combination of "regular" headaches and stabbing, intermittent head pains.

During this period, he has had a clean CT, a clean brain MRI, and decent bloodwork. We saw the radiologist this morning, and he was concerned, but just very vague about what this could be. To be honest, some of the things that he said didn't really make much sense to me - that maybe he has MS or some other new neurological disorder. It just doesn't seem at all probable to me that a guy with lung cancer with a (resected) brain met suddenly has something else too. It just doesn't seem likely to me.

Tomorrow we see a neurologist for evaluation and probably a referral for a lumbar puncture. We'll see where that takes us - I guess I'm just venting here, I feel like we are looking down the wrong road medically and it concerns me.

[Welthy]

MC,

Vent away!! You certainly have earned the right. I have seen a patient with lc come into the onc's office and she was referred to a neurologist too. Wacky symptoms (can't remember what they were) with clear scans too.

I hate it when you feel in your gut that a move is the wrong one to make. I hope your instincts are wrong this time and hubby can get some help from the neurologist. I hope more that it will be something easily fixed.

Many hugs to you during this frustrating time.

Welthy

[recce101]

"mary colleen" It just doesn't seem at all probable to me that a guy with lung cancer with a (resected) brain met suddenly has something else too.

Mary Colleen, I know what you mean. I have the same tendency (some people don't, it seems) to look for a common factor when a couple of unusual things are going on simultaneously, even if one started considerably before the other.

I think I've always been that way, though it probably jelled during my years as a military and commercial pilot, which included a mid-career assignment as an Air Force flight safety officer / accident investigator. I thought of myself as the "big picture" guy and felt that specialists, whether trying to fix minor problems on an airplane I'd just flown or whether assigned to help with a major investigation, sometimes focused too exclusively on their individual areas of expertise. On occasion I was wrong and had to accept that two seemingly unrelated but simultaneous conditions were, in fact, unrelated.

That's happened once so far in my cancer ride. During the 4 months that my treatment included taxol and carboplatin, I kept a detailed log and was able to detect a fairly clear 3-week pattern of side effects, including a rather troublesome foot rash (probably hand-foot syndrome) that lasted for several days starting the second week of each cycle. Then during cycle 5, a rash developed on the ankle and calf of each leg, and this new rash didn't go away on schedule like the foot rash and other side effects continued to do. It became very itchy with large scaly areas that broke loose occasionally, it seriously interfered with sleep, and none of the medications/lotions I tried helped. My onc didn't recognize it as a chemo-related condition, and he suggested I check with the dermatologist I see periodically for pre-cancerous skin lesions.

The skin doc took one look and said "that's just a bad flareup of your stasis dermatitis." He reminded me of the little brown splotches on my calves and ankles that I'd asked about years ago, when he advised me to continue with the diuretic I was already on for Meniere's syndrome and to elevate my legs whenever possible. He attributed the flareup, which resembled the worst of the textbook photos he showed me, to my lowered resistance and reduced circulation brought about by the chemo. He prescribed a potent steroid ointment, I slept through the night for the first time in many days, and my legs were back to pre-flareup normal (for whatever that's worth) in 2 weeks.

That's a much-too-long way to express my opinion that (1) you may be right that your husband's recent problem is a byproduct of the cancer, or (2) you may be wrong and it's a completely unrelated thing (as unlikely as that may seem), or (3) you may be half-right and it's an unrelated pre-existing problem that's been off the radar up to now but has finally come into the open because of his lowered resistance, decreased circulation, or the like.

Whatever it is, I hope it gets sorted out very soon. It must be doubly discouraging for both of you, since he was starting to do so well. Much Aloha,

Ned

[mary colleen]

Thanks, Welthy and Ned.

I can see from my previous post that I was starting to get a little testy after the appointment today.

I think I am just weary of recounting the entire litany to medical people in front of my husband, who is right now not really able to answer things easily and becomes a little confused at questions. I feel badly for him. This is not him, and I hate for his sake to have to speak for him. He has always been very strong and independent, and right now isn't sure if he is understanding questions correctly or not.

I do understand your point Ned, and would readily agree that I am a "big picture" person.

Anything that appears to be poor logic based on that big picture just grates on me, and sometimes prevents me from even considering possibilities that may leave me with a puzzle piece that doesn't exactly fit in.

It's definitely a trait that has tripped me up a few time in the past.

Thanks to both of you. On to the neurology doc tomorrow!

[teriw]

MC,

I wish I had even the remotest idea of what might be happening. It's all very mysterious. Prayers that the doctor will shed some new light tomorrow. I'm so sorry.

[alexan]

Mary Collen, hope you have more answrs today. Like I told you before I lst my apetite too. Sometimes I wake up with nausea, but that's it.

A lot of prayers & the best of luck

hugs ucky