Ruth and chronic cough

[TSund]

I have hesitated to write, because putting it down on paper makes all of the fears lurking at the back of my mind so much more real. Ruth has been coughing, esp. at night (non-productive though she sure sounds congested to me) for 3 weeks, and it's rather a mystery as to why. She's feeling OK outside of the cough. She had "nodules" show on original scan and last scan that radiologist pretty certain not cancer, they thought signs of an old infection. Onc had her keep her port in just as a caution. Ruth's next CT scan is this Friday. (holding breath)


The onc wants her to see a pulmonologist. I'm assuming she would not do that if things were pointing firmly to lung mets? On the other hand, it's scary to be sent to a lung doctor...makes it feel that much more serious. One of the things onc wants to rule out with the is MAI bacterial infection. (Ruth tests positive for exposure to TB from a young age but never had the disease - common for Filipinos I am told) MAI not a pretty scenario either.

I'm guessing another possibility is a side affect from the radiation she received? Does anyone know how far out from radiation this usually occurs? (reading Lani's recent post re: vit E + pentoxfylline with interest) Is there anything else that helps lungs heal? If this is a form of lung fibrosis, do I assume correctly that this shouldn't affect her other lung on the non-radiated side? (doesn't "spread" ?).


I am hoping and praying it's just a nasty virus that isn't being rid of easily. (tho w/o head cold symptoms?) Ruth had a very bad cold/flu a couple months ago (and another cold a couple months before that) so her immune system is definitely down. Weird that she's been coming down with bugs now that chemo etc. is done!

I am trying so hard stay calm for her, but terrified none-the-less and feeling alone. Any advice appreciated.

Please say a prayer for her.

Thanks

Sending healing thoughts to all...

Terri

[Yorkiegirl]

Terri I have been having really bad coughing for teh last 4 weeks. I have been to the Doctor and have had X-rays and all is fine.

I will tell you since we both live in about the same area alot of people are having this problem, it seems to the Mold in the air that is causing most of it.

But crap after 4 weeks I'm tired of it. It is really bad at night. I do have to take an RX cough syrup just to be able to get any sleep. I did also take 10 days of antibiotic and 6 days of steriods.

[TSund]

Vicki,

Thanks so much for writing. I hope that is all it is! Have you had reactions to mold in years past?

Ruth is also on night Rx cough meds. It has been a blessing for sleep for the both of us.

Hoping for the best,

TRS

[Yorkiegirl]

Terri, yes I do have allergies. Before Chemo I was taking allergy shots. I refused to take the shots during chemo. After Chemo they didn't seem to bother me at all.
But all of a sudden this year they have bothered me horribly, I reduse to take the shots again. Mold is one of the things I do have do have allergy to, but this year it has been really bad for it in the air.

[TSund]

I wish I could say Ruth had raging allergies; it would make me feel better. But I have heard of people develop them as they go through life.

TRS

[Yorkiegirl]

I myself never had allergies before, until about 2 years before I got Breast cancer.

I do pray that all will be well with Ruth. When does she have her Doctor appt?

[Becky]

Dear Terri

Don't think the worst. Ruth hasn't been off of Herceptin too long and hasn't been on her antihormonal. Did she switch drugs and how long has it been? Any changes in soap, detergent, makeup? New pillows, sheets etc. Anything can cause this especially since she had been ill just a few weeks ago. I am convinced those who have chronic sinusitis or brochonchitis have allergies (unless they are smokers). The wetness causes infection and it goes round and round.

I too can test for TB at times but its been a long time since I tested. I played on a badmitton team in high school and my partner had it as a child and tested positive periodically. I have tested negative for years but doctors always loved this part of my history as they never see that much. I don't think that its this. At least you're checking it out but I think there won't be much going on. Keep Ruth well so she doesn't get another cold which will worsen things. Keep the air moist if possible.

[TSund]

Dear Becky and Vicki,

Thanks so much for the reply. Much appreciated! Ruth did not change her hormonal yet, but I suspect that will happen at the two year mark if not before. Yes, I am uncomfortable with the data on this too, but they keep insisting this is the right path for Ruth, and Ruth gets very uncomfortable challenging the onc. any further. This onc IS excellent by all reports, so I still don't get the disconnect here whether it's something she knows that I don't or what.

There's definitely something going on with her lungs; what I've no idea; whether it's long lasting virus/bacteria, GERD or sleep disturbance, or allergies, or what. Nights are pretty miserable without a good dose of the Rx tussinex. Hasn't changed anything that I know of, but we'll keep thinking.

Friday is the Cat Scan. Hopefully will give some clue as to what's going on, (and hopefully what is NOT going on regarding the other possibilities!)

Thanks again my friends.

TRS

[Mary Anne in TX]

Hi Terri!
I'll be anxious to hear from you after the scans. Try hard to take that deep breath and keep believin'... ma

[ElaineM]

Ruth should get tested for all possibilities. Scans, xrays etc. are important. She should also consider allergies.
An allergist or immunologist can perform skin or blood tests to see if allergies are a possibility. Yes. We can get allergies as we age or encounter new things in our environment. Another possibility might be side effects from drugs. I found out I was allergic to some pre meds they were giving me during chemo after I had a chronic cough for 2 months.

[TSund]

Ruth's results have come in. Good news is that they do not think there is cancer in the lung. Hurrah! Bad news is that "findings are worrisome for active infection" - particularly MAI infection". As I understand it, this is an infection similar to TB (but not contagious) very tough to get rid of, can be dangerous but not necessarily so.

She will have the bronchoscopy this week and hopefully we'll find out what's what. I'm hoping it will show fungal infection rather than the MAI. Pulmonologist ALSO thinks she may have allergies, so I'm not sure which he thinks is driving the cough. I'll go with her for the procedure on Wed and hopefully can ask more questions.

Will keep you posted.

TRS

[schoolteacher]

Terrie,

Thanks for the update on Ruth. I was thinking about her this morning.

Amelia

[flynny]

This is great news!! I wish you well with the upcoming test.

[tricia keegan]

Ruth has managed to beat cancer so I'm sure she'll handle anything that comes her way but hopefully it'll be good news. Keep us posted and thankfully it is'nt cancer!

[Believe51]

Wondering how Ruth is doing today?? Been thinking about you both as you search for the answers.>>Believe51

[TSund]

THANK-YOU for the concern. It means so very much.

Ruth had her procedure today, the dr. said it went very well and Ruth came through it pretty unscathed. More scary to think about then to experience as they dope you up so well.

They took a biopsy, we will know the results this Friday. He said there was excess mucous in the lung, which is indicative that something is going on. He thinks it points to MAI type infection. It's just incredible to have beat back the cancer and then to have something like this come up, which might be unrelated. I can't help feeling it is a result of the lowered immune system, but he says even healthy people can get this. If this is a MAI the treatment is hell on wheels - very strong drugs for a VERY long time, and it doesn't even work all the time, but they don't necessarily treat unless symptoms get significant. We'll see. I hate having yet something else hanging over our heads, but I know we are blessed that he does not believe the report will show lung mets. (I think he said something about the "clustering" if that makes any sense to anyone...the words "probably not cancer" kept reverberating in my head so I wasn't digesting it all!)

[Yorkiegirl]

Prayers and good thoughts still going out for Ruth.

[TSund]

Well, Friday, the doc said we will not know results for at least a couple weeks. (not sure why he said to call Friday then!!)

He still thinks it a MAI. Ruth still coughing but feeling fine otherwise.

We are to go to Peru end of this week! I'm a little nervous about the altitude issues with her lung, but doc says should be OK.

Cross your fingers...

TRS

[StephN]

Hey gals -
Just wondered if Ruth has been prescribed an "inhaler" of some kind?

Since you will be at high altitude, let Ruth take it her pace as much as possible. She very likely will experience shortness of breath/lightheadedness. But she should be able to adjust.

Living at sea level all my life I do get affected when I go to places such as Snowmass in Colorado, the high Swiss Alps. etc. I even recall getting light-headed while driving over the high pass from Durango to Silverton (New Mexico/Colorado border). I almost passed out at the check in desk at Snowmass - had to sit down and let hubby take care of it!

And I was an avid skier and competition swimmer while growing up and even later.

Have a wonderful trip back in time!

[suzan w]

Hope you are having a wonderful time on your trip! Bette, my partner has a chronic cough...caused by an inflamation of the 'vegas nerve' ( and we thought it was a gambling problem). Her doc says it is the most common cause of chronic coughs...she has a cat scan every 6 months to make sure that nothing else is going on in her lungs.

[TSund]

Hi Susan and Steph,

Well, I pressed her to get both the "high altitude " rx as well as an antibiotic rx in case she gets sick again. (She's gotten a bug every time she's taken a plane for the last many months and the last one was a doozy - preempted this apparant MAI/MAC infection.)

No inhaler was suggested but hopefully we'll be OK. For future reference what drug is usually given Steph?

I have spent several July's in Crested Butte with an orchestra, and I'm always dying after one flight of stairs especially in the first several days. So ,am guessing we'll both be feeling it!

This trip is part of our "Bucket List" ; but hopefully we will be fulfilling our list for many years to come. I tease Ruth about when we are old and crotchety. I pray we'll both be so lucky!

Thanks for the words. Ruth actually does have something in her lung, so it's probably not the vegas nerve. bacterial, fungal, etc. Tho I love the term!!



TRS