Thank you Christine. I know it must be hard to come back to this site. You remain in my thoughts.
That's great so far Debra...keep it going...were all routen for ya!!
Glad the bronchoscopy was good to you! That still remains the worst thing I've had done over these years - and it didn't even work..... Bet the surgery goes ahead as scheduled too. You're in my thoughts---
Glad that the bronch went well, both in terms of comfort and not seeing anything concerning. Good luck with upcoming decisions.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Good news, and a great opportunity to eat a lot of ice cream regardless!
Christine, lovely to hear from you.
Great news Debra. I hope this good news is a precursor of what is to come. --mikem
Excellent results, Debra! Glad it wasn't too uncomfortable and nothing was found. I hope that you can proceed with your surgery, and I look forward to continued good news updates from you.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Well, I wouldn't say that nothing was found. The hilar node doesn't seem to be invading the bronchus, however I do have a problem with very viscous (thick) and sticky dark green mucus that comes up in BB or peppercorn sized balls surrounded by more liquid, white and sometimes frothy mucus, that is very difficult to cough up and that is pretty much a daily dilemma. I have difficulty breathing until I have cleared this substance, which can take hours of wheezing and hacking. I don't think it is necessarily associated with the cancer, but more likely a sensitivity to something environmental, or chronic infection, fungus, bacteria, virus... something.
The pulmonary physician who did my bronch did a "Bronchoalveolar lavage for: Immunocompromised host protocol" so from what I've read they will be checking for many nasty little organisms which might be responsible for these symptoms, which I just can't seem to shake. I've taken an antifungal and a z-pack for two different episodes of "bronchitis" in the recent past. Seems I am more susceptible these days. The z-pack really helped, but I still have these little daily attacks.
I was reading up on meds for Cystic Fibrosis, to see if they are ever prescribed for reasons other than CF. Mucinex does nothing, cough preparations do nothing, broncodialators do nothing, so I'm searching for something that can break these BB like balls apart or liquefy them or something so I can clear them and breathe. I hope the lavage yields some answers, but I see that some studies can take weeks. Just one more thing in the continuing saga...
Maybe Dr. Walco can comment of the CF drugs?
Yes, I'm sorry - not a good choice of words on my part. I'm so used to thinking in terms of it being a relief that a problem isn't directly caused by progressing cancer, it may seem insensitive to celebrate when it's clear there is still a problem, even if not directly cancer-related. Good luck with further treatment.
I'll forward your question to Dr. Walko as well.
Glad to hear the procedure went well Debra. I hope you get some answers soon on your continuing symptoms and you can proceed to surgery as planned. Always sending best wishes your way!
Glad the procedure is over and hopefully may yield some helpful results. I'm sorry to hear about the coughing/mucous though as I'm sure this is incredibly annoying.
Your question is an excellent one in terms of using cystic fibrosis drugs for other indications. Since patients with CF do not produce certain enzymes in their bodies, they are left with very thick mucous that clogs the airways and adds to the susceptibility to serious and recurrent infections. There are a few agents used to break up this mucous including Dornase Alpha, an inhaled DNAse enzyme that breaks up the mucous. Studies in cancer are currently limited to patients with head and neck cancer getting radiation and it does not appear that this data has been released yet, nor are there any other ongoing clinical trials that I was able to find with this drug in cancer patients. Adding to this, the drug is expensive and may not be covered by insurance so getting for an off labeled indication like yours, though very attractive, may have other barriers.
Excellent thought though.
Are you taking any other drugs that could be drying out the secretions, like allergy medications or scopolamine? Also, keeping well hydrated sometimes can help with clearing the secretions. Unfortunately, our options in terms of cough medications are pretty limited and even the expectorants like guaifenesin do not work well for people like you who have LOTS of thick secretions.
I wish I had more helpful information to provide (or funding for a clinical trial to look at this indication!),
Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL
Thanks Jim for forwarding the question to Dr. Walko, and I am celebrating the fact that the cancer is not invading any surrounding structures, so thank you also for the support.
Dr. Walko, those are exactly the drugs I read about. It seems that immunocompromised patients who are prone to excess mucus secretions from any cause and are therefore also susceptible to infections might be able to benefit from those CF drugs. I read that not only do they help to loosen the secretions, but that they also help prevent infection by some (antibiotic?) mechanism? It sounds like the perfect combination for me.
Thank you for the tip about staying hydrated. I keep hash-marks on my calendar on the refrigerator to keep count of how many glasses of water I've had during the day.I'm pretty good about getting in about a gallon a day. I like water, so it's not a chore for me.
As far as the scopolomine patch, I will ask my PCP for samples and see if there is any improvement. I haven't really explored allergy medicines either, so I'll pursue that route too. Thanks for at least seeing how my thought processes brought me to the point of wondering about the CF drugs. I volunteer to be a study of one.
I'm still looking forward to Grill It Shakes for post op mental health support. Thanks for that tip too!
I should have clarified in my response, I would actually try to avoid scopolamine and allergy medications since they can further dry out the secretions. I was just trying to think of other reasons why they may be so thick.
I wish patients had more of a say in some of the trials that get funded, especially for symptom management since the data is often more lacking in this area especially.
Enjoy your milkshakes!
After my wisdom tooth surgery, I lived on these for a few days and fortunately Cook Out has about 30 flavors!
Oh yes!!! COOK OUT (not Grill It)!
I was close!!!! I think the secretions are thick (and always dark yellow to green) because I have several things going on chronically. I have HCV, CMV, toxoplasmosis, etc. So I think I have a chronic bronchitis going on or something. Viral infections that wax and wane, I think. I get low grade fevers often too, with no accompanying symptoms to explain them. And I'm very sensitive to fragrances in cleaning products, etc.
I don't tend to like allergy remedies much anyway because they hype me up too much. Maybe I can ask a pulmonary doc about some sort of vapor treatment. If the BB's would just let go and come up I would be fine.
If you decide to get a study together of CF meds for lung cancer I'll be the first in line.
Thanks for wonderful info and prompt response.
One more thought...do you have a pulmonologist who works with your medical oncologist? Pulmonologists frequently take care of patients with CF and it may be worthwhile seeing if you can see one or even if your oncologist could consult one to ask about the Dornase Alpha.
I saw a pulmonologist when I was first diagnosed, but not since. I know they attend tumor board. I see my onc tomorrow, and will ask. Since I'm scheduled for pneumonectomy shortly, I'm pretty sure it will be one of those back burner things until post op and after we see how I'm doing with one (partial) lung. It will be even more important to clear the obstructive substance then, and I will have perhaps a better argument for trying it. I will keep you posted.
Great news on the bronch, Debra. . .and GOOD LUCK tomorrow. . .
Debra, just thinking that your surgery must be coming up soon, and hoping you are feeling OK about it.
Re the mucus, please forgive me if I am teaching my grandmother to suck eggs here, but I have found mucodyne (carbocisteine) fantastically useful. I take 3 x 375mg a day and have no side-effects - but if I forget to take it I really notice.
I can't say for sure but it appears carbocisteine isn't used/sold in the US. :?: I could be way off but I've been googling and can't find it in any stores or referenced with the US.
There are studies on it's use in pubmed for COPD but not much else except its use in UK and Australia.
I'm glad you are using it with such good results certain spring.
I had to look this one up, but you are correct that carbocisteine is not available in the US, though sounds similar to some of the CF medications that break up the mucous. I spent some time looking but cannot even find another similar product available in the US. Labello lip gloss and now carbocisteine, you've gotten us Americans again, Certain Spring! (Good to know that it works for you though and can be recommended to those outside of the US).
Oh dear, sorry - not very helpful of me.
It is great stuff though ...
Don't apologize, this IS helpful since people from all over the world can access this site! Also it's something else I'll have to check out when I'm across the pond :)
I have to double up on my agreement with Dr. Walko. By the way Dr. Walko, thanks so much for watching out for this thread.
Certain Spring, your voice is needed here. Not just for what it adds as a thoughtful person caught up in this terrible disease but as a non american who can point to alternatives that aren't sold in the US but can prove very helpful for those living all over the globe.
Hi gang. We're all packed and ready to go to Duke. I hope the leaves are changing. My caregiver Lisa will be updating you guys while I'm in hospital. I haven't decided whether I'm going to bring my laptop yet, but she will have her (fancier than mine) phone that does everything.
My oncology, primary, and pulmonary physicians are all ready to pick up the after care here at home, so hopefully things will go smoothly and I'll be back to gettin' my mojo workin' real soon. I should do a YouTube of my son and I doing that song and post it for you guys. Maybe I will!!!
This weekend we took my sons jeep for a ride down A1A and had seafood in St. Augustine. He blasted the Allman Brothers and various blues and reggae artists on pandora the whole way there and back, and we had a ball. What a blast.
So... under the knife I go... send some good vibrations my way!!! I have a feeling this might hurt.
Dear Debra, good luck with the procedure! Looking forward to hearing from you soon,
Yes - thinking of you.
Unfortunately leaves are far from changing, but weather is wonderful here in the Durham, NC area.
Yahoo Debra! I am doing my happy dance for your procedure and for your exhilarating trip up and down A1A to St Augustine with the Allman Brothers at full blast!
I know recovery from this major surgery will be tough but you are TOUGH ENOUGH to take it on!
I am sending every positive vibe I have your way!
PS: I start a new MEK inhibitor trial at Johns Hopkins with Dr. Charlie Rudin in 2 weeks and feel good about my prospects...so I have plenty of good vibes to share!
Best of luck Debra. . .I love you lots. . .heal fast. . .and looking forward to the updates.
This is a youtube of good vibrations by wilson/phillips I really think you will like it, the girls are right on with the harmonies. However you will also have to sit through a commercial...mute.
Yes, send you tube!!!!!
With you in spirit,
Sending you lots of good vibrations!!!! Will be thinking about you and awaiting updates!
Love and (((hugs)))
Good luck, Debra! We'll be looking forward to your updates!
Debra...My house is really vibrating with all these good vibrations...my husbands going in tomm. for his knee replacement, your surgery and Laya's Mom...hope you could feel the positive energy from all of us :)
Debra, Absolute best of luck. Can't way to hear back from you and glad that you have someone to step in for a very short time to keep us up to date. Hopefully you are back on your computer in no time. Take Care -- mikem
Looking forward to good reports after the surgery!
I have been off line for a few weeks and just came on line to see you have made your decision and are going for the cure. Please know you are in my prayers and extra prayers will go up on the day of your surgery.
I read that you will be operated on on Sept 28 and also somewhere it said the 29th. The 29th is my birthday and all I want for my birthday is for you to come through this well. Keep fighting, you give so many people hope. I will be looking forward to seeing your post when you are feeling up to it.
Be well my friend.
Its been quite a while since I've been here, and boy have you been busy. I hope that all goes excellent with the procedure. Have had you in my thoughts and will continue to do so.
Here we go...
DUKE OR BUST!
Debra, signing off (for now) Love you all!
don't bust :-P
Love Love Love
It's official. Surgery is scheduled for 12:30 tomorrow. Bronchoscopy, (didn't I just do that?) Mediastinoscopy, with frozen section, then VATS. Lobectomy (or) pneumonectomy and hopefully no conversion to full thoracotomy.
Intensive care first, then to a "step down" room, then to a regular room, then to the hotel. 4-5 days in hospital then 4-5 days in the hotel, then if I'm doing well he will discharge me to home and we won't have to make the return trip later.
We talked about pain management (since I can't have an epidural) using less opioid, more ketorolac or similar drug. They have a pain "team." I'm sure we'll work it out, and I'll try to post what we did for Dr. Walko, who I think might be interested. The usual coughing, spirometer, and on my feet ASAP.
My caregiver, Lisa, will sign on as me and give brief updates. No turning back now.
Love you all,
Good luck with your surgery tomorrow. As always, you will be in my thoughts and I will look forward to updates from your caregiver. As you already know, I am a firm believer that having a Lisa in your corner is a very good thing! :wink:
Good luck tomorrow, you will be in my thoughts. You are a strong, determined lady so that will aide your recovery! I will be anxious for the updates from your Lisa :) Lots of love and (((hugs))).
Wishing you all the best!! we look forward to hearing from you.
Much Good Luck Debra. we look forward to your updates.
Visit my bio here.
Hi everyone. This is Lisa. Debra's daughter and caregiver. Update on today. VATS was cancelled. Distant mets found during the media stenoscopy. I don't Know Much about prognosis but I know my mom will fight. Thank you all so much for supporting her and being her outlet. It means more than you know. Debra will be on tomorrow.
Lisa, thank you for posting, and for looking after Debra with so much love.
Poor Debra, can't have been much fun being marched to the top of the hill and then down again.
Lisa, thanks for letting us know. Much love to Debra,
Sorry very sorry to hear this, I know Debra must be devastated. I also know she will pick up and continue the fight.
Please tell her I continue to pray for her mind, body and spirit.
Lisa, thank you so much for keeping us posted and taking care of Debra with so much love.
To you both, I'm so sorry the surgery turned out to be unnecessary. This is such a roller coaster ride for all of you.
As always you remain in my heart,