Question regarding lung surgery

Posted by Jen_b @jenblalock, Apr 18, 2017

I just had my 4th CT Scan and the results showed my 2 cavitary lesions unchanged from the last scan 4 months ago. I am now free of NTM disease and have been for a year. I feel good. No coughing at all and I’ll be stopping meds in 9 days. I do not suffer from shortness of breath and feel perfectly normal (except side effects from meds). I sent the CT Scan report to my doctor at NJH and she wants me to meet with CT Surgeon during my next visit with her (May 1). I think she might be thinking of surgery to remove one of the lesions. I’ve read a lot of articles and it seems that surgery is indicated when NTM medical therapy has failed which is not my case at all. Medication was very successful and my sputums were negative almost immediately. I have discussed this with my local pulmonary doc in the past and he feels surgery would be too drastic just to possibly prevent another infection.

My question is has anyone heard of removing part of a lung that has a cavitary lesion to prevent another infection when the patient was otherwise healthy?

@dmarks

I am actually a patient of NJH and have had two lung surgeries during my first infection. My pulmonologist felt is was drastic as well and I have to admit that I became disease free for a few months but was reinfected……So now I am going down new antibiotics again. My advice would be no surgery if you are free at this time and experiencing symtoms. Let me know who your Dr. is..

Jump to this post

@dmarks, I hope that you do go to the Mayo in Az. I would be VERY curious about what they say about the lobectomies. You may have had severe enough damage to have needed that done. Do you also have bronchiectasis?

REPLY
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday…..My name is Linda Knox, posting as lindaaz…..Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count……..something like 250 when the lowest is around 600……I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly……..It is suppose to help you fight infections…..
I haven’t had any new infections while doing this.and I feel better……more energy for sure…..but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions…….Just thought I’d mention it…..
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week….Pretty nervous…….
Hope this finds you doing well…..So happy to have found this site…..
Linda az

Jump to this post

Hi Jen, Here’s a link to the MAC conference at Jewish Women in CO. 2016 https://www.nationaljewish.org/ntmvideos2016 There’s information and a 30 minute video from Dr. John Mitchell, a surgeon. I’m meeting him next week. I was diagnosed w/ MAC spring of 2016. I’m still on several antibiotics. I have a cavity in my one lung and a nodule in the other. My infectious disease/lung Doc at Stanford Medical things surgery is a good option for me. He’s concerned about reoccurrence, which I hear is quite common, & more so w/ those of us who have cavities in our lungs from the MAC bacteria. I’ll know more once I talk w/ Dr. Mitchell. I also have had negative sputum sample every month & 12 so far in all. The surgery is elective and is individual decision. I’d like to hear from people who’ve had the surgery. All the best, Rona

REPLY
@dmarks

I am actually a patient of NJH and have had two lung surgeries during my first infection. My pulmonologist felt is was drastic as well and I have to admit that I became disease free for a few months but was reinfected……So now I am going down new antibiotics again. My advice would be no surgery if you are free at this time and experiencing symtoms. Let me know who your Dr. is..

Jump to this post

@dmarks Thank you for this invaluable information! My doctor at NJH is Dr. Huitt whom I respect but am glad that I have two opinions. I just spoke with her via phone again after she reviewed my last CT Scan and she did not mention the surgery. One lesion has shrunk and bit while the other remains the same. I am waiting for certain at this point.

REPLY
@windwalker

I am not there yet.
 

Jump to this post

What is NTM

REPLY
@bomar

What is NTM

Jump to this post

NTM = Nontuberculous mycobacteria
Nontuberculous mycobacterial (NTM) lung disease is a general term for a group of disorders characterized by exposure to specific bacterial germs known as mycobacteria. There are many species of NTM. Mycobacterium avium complex (MAC) is the most common, accounting for 80% of all NTM lung disease cases in the US.

REPLY

My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during the treatment. Stopped taking the 3 antibiotics and 2 months after, the results of the bronchoscopy shows MAC again. Doctors restarted again the 3 big antibiotics with a possibility of surgery. Anyone aware of the best center for such a surgery? God bless you all

REPLY
@nnassiri

My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during the treatment. Stopped taking the 3 antibiotics and 2 months after, the results of the bronchoscopy shows MAC again. Doctors restarted again the 3 big antibiotics with a possibility of surgery. Anyone aware of the best center for such a surgery? God bless you all

Jump to this post

@nnassiri Nass, can you tell us where you are located, whether she is currently seeing a doc who specializes in MAC, and why they are recommending surgery? Both National Jewish Health and Mayo are well known for their work with MAC. There are other specialists around the country as well. There are also other drugs that can be tried before surgery, but it depends on the extent of damage in the lungs as well. Sue

REPLY

Thanks Sue, appreciate your reply. We are living in Dubai. My wife is currently being re-treated with the 3 big antibiotic again after a break of 4 months. While she was under the treatment of the same 3 antibiotics and (Amikacin into a vein for three months), she was feeling well during the treatment. Her Pulmo will form a team of infection disease specialist and a surgeon to discuss and decide her case in 2 month time e.g. Mar 2020 – surgery is a possibility. If not, should we keep her on antibiotics? and for how long? what about a maintenance does? Much appreciated – Nass

REPLY
@sueinmn

@nnassiri Nass, can you tell us where you are located, whether she is currently seeing a doc who specializes in MAC, and why they are recommending surgery? Both National Jewish Health and Mayo are well known for their work with MAC. There are other specialists around the country as well. There are also other drugs that can be tried before surgery, but it depends on the extent of damage in the lungs as well. Sue

Jump to this post

Thanks Sue. We are living in Dubai. My wife re started the 3 Big antibiotics and Tobramycin under the supervision of her doctors for 3 months and then will see how things are going on. Her symptoms are much better now after a month and I see a good improvement. The question is why not keep her on the same medications for 3 or even 4 years rather than going for surgery as long as no side effects from these medicines through periodically testing kidney, sight, and hearing. I am not a specialist this is at least my wish. God bless you all.

REPLY
@nnassiri

Thanks Sue. We are living in Dubai. My wife re started the 3 Big antibiotics and Tobramycin under the supervision of her doctors for 3 months and then will see how things are going on. Her symptoms are much better now after a month and I see a good improvement. The question is why not keep her on the same medications for 3 or even 4 years rather than going for surgery as long as no side effects from these medicines through periodically testing kidney, sight, and hearing. I am not a specialist this is at least my wish. God bless you all.

Jump to this post

@nnassiri Hello Nass – I am glad to hear that your wife is seeing improvement and tolerating the medications. The usual duration of treatment for the Big 3 antibiotics is somewhere between one and two years, but it is highly variable. I do not know if there is clinical evidence that 3-4 years of continuous treatment is effective, and I would be worried about the long-term effects on the body of so much medication and development of drug resistance. Has her team submitted the sputum culture to drug sensitivity testing to be sure the strain of NTM is susceptible to the drugs being used? One of our members, Terri @windwalker has used Tobramycin and another drug in alternate months to keep her infection under control – maybe she can tell you something about how that is working for her.
Sue

REPLY
@nnassiri

Thanks Sue. We are living in Dubai. My wife re started the 3 Big antibiotics and Tobramycin under the supervision of her doctors for 3 months and then will see how things are going on. Her symptoms are much better now after a month and I see a good improvement. The question is why not keep her on the same medications for 3 or even 4 years rather than going for surgery as long as no side effects from these medicines through periodically testing kidney, sight, and hearing. I am not a specialist this is at least my wish. God bless you all.

Jump to this post

nnassiri, Hello. Is your name Nass? I want to give you additional information on treating mac. If you click on my photo icon here; my treatment plan will pop up. You are right to ask about a longer treatment period with antibiotics. I have been on monthly antibiotics since 2013. I was tested mac negative by 2014, but stayed on the drugs to keep it gone. Then, in 2016, I got infected with pseudomonas. I was then prescribed inhaled tobramycin 300 mg. That knocked the pseudo out in 30 days. I have been on bi-monthly antibiotics ever since then. I have been infection free since 2016. I am treated by drs at the Mayo Clinic. They have the best reputation in the world. I was never put on the 'Big 3' antibiotics, and was fortunate that my treatment worked. Did your wife's doctor also have a suseptibility test done? If yes, please get a hard copy of it. If you do not mind sharing the results; I'd like to know what the results are. This is important. The bottom line is; whatever caused your wife to be vunerable to mycobacterium infection, never goes away. That is why patients should consider long-term antibiotic maintenance. Blessings to you & your spouse.

REPLY

Thanks Terri for your reply. My name is Nasser. wife is back again on the 3 Big medicines (MAC) and tobramycin (Pseudomonas) for a month ago. I will ask her doctor to do a a susceptibility test. I will also discuss with him your maintenance doses; Cipro for 10 days bi-monthly, on the 'off' months, on doxycycline for 10 days. Further, on inhaled tobramycin till pseudo is knocked away. I am aware of Mayo clinic and wish treatment/advise are offered through a distance. Thank you again and a big "thank you" from my wife to you.

REPLY
@nnassiri

Thanks Terri for your reply. My name is Nasser. wife is back again on the 3 Big medicines (MAC) and tobramycin (Pseudomonas) for a month ago. I will ask her doctor to do a a susceptibility test. I will also discuss with him your maintenance doses; Cipro for 10 days bi-monthly, on the 'off' months, on doxycycline for 10 days. Further, on inhaled tobramycin till pseudo is knocked away. I am aware of Mayo clinic and wish treatment/advise are offered through a distance. Thank you again and a big "thank you" from my wife to you.

Jump to this post

@nnassiri You are welcome Nasser.

REPLY
Please login or register to post a reply.