Question.....problems thinking/speaking, anyone?

[mary colleen]

Around 3 months prior to my husband's diagnosis (around 10/1/06), I began to notice that he seemed to be developing an odd level of difficulty coming up with common words - usually ordinary nouns - in conversation.

I was not yet aware at that time that he had cancer, and he had not begun any treatment yet. The issue was prominent enough that I wondered privately if he might be having some kind of early onset dementia symptoms. I guess I tended to think along those lines simply because my Mom had recently passed after a several year journey through her own dementia, and I had been immersed in that world with her for many years. It was just what I knew, so it's what I thought of.

My husband did have a brain scan after diagnosis and prior to his surgery; it was "clear." He had been experiencing declining energy, weight loss, and repeated respiratory infections for 2 years when I began to notice the word problem, and I had a sense (correctly or incorrectly)that it was all associated.

I myself am 47, and understand the typcial middle aged phenomenon of not knowing where my keys are, but this seems to me to be different from that.

Now that he is diagnosed and in chemo, it seems to be getting worse. I know that there is a "chemo fog" syndrome that many experience, so I assume that is exacerbating the problem. Others don't seem to notice the problem, but I think that is because I am alone with him for many hours a week, and no one else is. I no longer fill in the words for him automatically, because it is so frequent that I don't want to embarass him. As I said earlier, it is usually nouns that he flounders for - the name of our cat, an object word, the name of the city 40 miles away where our daughter lives at college, etc.

Question: has anyone else experienced this type of issue? Is there anything about just having LC that impacts mental or verbal processes? In spite of the negative brain scan, I do have worries that this could be a symptom of brain mets.

Sorry for the length here!

All info appreciated - Thanks

[eppie]

You have not mentioned if he has has a MRI/PET scan of his brain.

I would get one right away!

[mary colleen]

Eppie,

He did indeed have a brain scan around 10/1, prior to his 10/10 bilobectomy. I was not there that day, and did not go with him, so don't know if it was a PET/CAT or what. I'm sure I can find that out. (He unfortunately went through the early diagnostic stuff pretty much on his own without telling anyone.) How is a brain scan tyically done?

That is kind of what is puzzling me - he had this symptom prior to diagnosis, and I was told by the nurse case manager that his brain scan was clean. Now that it is maybe more noticeable, I'm confused.

[mary colleen]

Eppie,

He did indeed have a brain scan around 10/1, prior to his 10/10 bilobectomy. I was not there that day, and did not go with him, so don't know if it was a PET/CAT/MRI... or what. I'm sure I can find that out. (He unfortunately went through the early diagnostic stuff pretty much on his own without telling anyone. That's how he is.)

How is a brain scan tyically done?

That is kind of what is puzzling me - he had this symptom prior to diagnosis, and I was told by the nurse case manager that his brain scan was clean. Now that the problem is maybe growing more noticeable, I'm confused...and also now have the fact that he is in chemo now to further confuse the picture.

Maybe I just wait until chemo ends, and see if it clears up then?

[mary colleen]

Could not find the first one, so re-posted!

[Maryanne]

I don't know what to tell you, Maybe someone here has experience the same thing.

You may want to ask Dr. West that question. There will be an open chat with him on Wednesday the 6th of Dec. Not sure of the time in Nebraska, you can go to Ask the expect forum on here and Katie has the times posted there. Or you can go to his website and ask him the question there.

I am sorry, I know how scary that is especially if you don't know what is going on or what the cause may be. Have you asked his Onchologist that question?

Maryanne

[mary colleen]

Maryanne, I have not asked. My husband becomes very apprehensive and anxious when I begin to ask questions at the onc appointments - he wants to sort of grit his teeth, get through this fast, and know nothing that will scare him. I therefore limit my questions at the appointments when he is present (which is always, of course.) I think what I will do is give the onc nurse practioner a call, mention my concerns, and see what she thinks. Thanks!

[spicysashimi]

pre-diagnosis, he could have just been feeling like crap. I thought I was "asymptomatic" but the more I thought about it, the more I realized that my body (and maybe mind) was comprimised in some way. For the 6-12 months prior to diagnosis, I had amassed an extensive collection of zinc lozenges and cold medicines. Point is, the cancer may have made him felt bad.

post-diagnosis, well, shoot. You got the too-much-to-bear anxiety, the chemo, all the other drugs, etc. Take your pick. At restaurants these days, I have the grace of a six year old ("I want food. Please bring it to me.")

I ain't no doctor, but a brain MRI, I think, is pretty definitive. Of the diagnostic scans we're all used to by now, MRI's are probably the most precise. If the radiologist says "clear," I would accept that unquestionably.

Incidentally, since I am paranoid of brain metastases, and because I've had a weird twitch in my temple that pushes my jaw back and forth, I've asked about the symptoms for brain metastases. He would experience problems with vision (blurred, double, etc.) and headaches. Again, I'm just guessing here but I don't think he'd necessarily have problems with cognition.

Let him know he's got friends here.

aaron

[mary colleen]

Thanks Aaron (or...perhaps you prefer "Spicy??") I do think that your analysis is feasible - he DID feel like crap for months and months prior to diagnosis, and of course now there are so many physical, psychological, and practical issues at hand. Maybe such a large portion of his thoughts are dominated with this illness that he simply runs out of memory for ordinary things. All of that has crossed my mind, but I ruminate about these things so much I sometimes think I am probably driving MYSELF into cognitive problems!! I have "hey, it's all good moments", alternating with "how the heck could this be happening" moments.

Your description of your approach in restaurants made me laugh out loud. It's like.....YOU HAVE NO IDEA HOW MUCH I AM DEALING WITH/DO NOT FRUSTRATE ME!!/AAARRGGGH

Thanks

[karenl]

Hi

Mum experienced a great deal of cognitive impairment (similar to what you describe), but probably more pronounced, in the last couple of months of her battle. It started quite inoccuously, but proceeded very quickly to quite significant impairment. She did have brain mets and treatment for them about six months prior. Whether the symptoms were due to the lesions, edema, the treatment, something else altogether, or just the disease process, we don't know. Most of her blood work was OK.

Some of the things (other than brain lesions) that can cause cognitive changes include blood sugar, serum calcium levels, dehydration, steroid use, side-effects of treatments....the list goes on.

If his brain scan came back clear, I would take heart from that, but I would probably also consider asking for another one. Mum's lesions were apparent on CAT, but an MRI is the better diagnostic tool.

If your husband is talking about going back to work, then his level of impairment is nothing like as significant as Mum's, and I would think it possible that there might be some other (hopefully less serious!) cause for his condition. I think that cognitive symptoms due to brain lesions tend to progress quickly and significantly, amd would be obvious to others besides yourself. But an MRI would certainly clear up that issue.

All the best,

Karen

[mary colleen]

Karen, thanks so much for your input. He actually did go back to work on the 27th, and I was pretty nervous about it; about his co-workers noticing his issue, and more so about the fact that he drives very extensively in his job, and I have seen him have recent, brief confusion in interpreting traffic situations. He actually seemed to do ok, and seemed also to feel that the increased activity level and stimulation was helpful.

You know, you actually hit on something I had not thought of. In all of his weekly bloodwork, his blood glucose is quite high (130-140.)That was still the case last week. It was mentioned once in the hospital post surgically, but I think that we essentially forgot about it in light of all of the other things we had to think about. I think that he needs to get into his primary physician and discuss this.

Thanks for the idea, I think it's possible that this may be part of the issue!