Hello! Welcome to the site. Is there a support group in your area? I have a member who also had lung cancer and NTM in the past at a NTM support group.

Have you read Insight- The Patient Manual?

Yes I have read The Patient Manual.

I am just trying to understand how to live with both the cancer and the NTM along with the drug side effects.

I do not see a support group in the area, which is why I signed up for the bulletin board.

Even on the Inspire (cancer board) site, there is very few cancer patients that discuss getting NTM.

So any help or responses by persons who have cancer and then got NTM would be helpful.

Thanks

Hello! I am glad that you read Insight. Sorry that there is not a support group in your area. I will reach out to the support group leader to see if the person I recall would be interested in getting on this site.

Hi kfs52,

I'm afraid I'm not a lung cancer/NTM person, just NTM. Yes, the treatment made me very tired in the first 8-10 months, then I slowly started getting more energy as the lung infection began to clear. I still had annoying side effects from the antibiotics (bad joint pain and nausea, primarily) but my energy level improved...VERY slowly.

I think it also helped that I tried to get more active around the 8-9 month mark. Just some gentle chair yoga at first, gradually increasing activity level over the weeks and months. Prior to that I had been very inactive and was on oxygen therapy. I managed to ditch the oxygen about 12 months into NTM treatment.

I hope you find other people who have been through your combination of cancer and NTM. It does help to compare notes and connect with people who get where you are coming from. Best of luck to you!

Hello! I agree w Merry stating that the best thing is that you are on the right meds, right path.

Have the doctors discussed megace with you to assist you with your appetite?

Lessening the fatigue With patients varies; I started to feel better after 4 months of treatment.

Do you own a pulse oximeter to check your oxygen levels?

My friend did get back to me w information about a support group member who had cancer and NTM. She had colon cancer and it was not at the same time as the NTM event. I will keep a lookout for someone in your same predicament . It is great when you can communicate with someone else who is walking in your same shoes .

Kati

Thank you everyone, I know my fatigue is compounded due to the immunotherapy and the cancer pain meds.

I will speak to my dr and see if there is anything we can do to get me back on my feet.

I am working on the eating, it is hard!

Did anyone have a lot of phelgh coughing and issues? I have been using saline in the nebulizer, but I am not sure helping.

Thanks Kim

Hello! You are most welcome!

I am sure that it is overwhelming dealing with the two issues simultaneously. I have dealt with two issues at the same time , was overwhelmed with doctor appointments...etc.

Yes, please speak with your doctor about megace, boost, sandi shakes.etc.

Yes, I have have periods of excessive mucous; I increase mucinex, drink plenty of water, increase chest clearance times.

It is good to use the 7% nebulizer; some patients do not feel immediate relief; docs say that any airway clearance which shakes the mucous around is beneficial. You may not feel the results instantly, but it has been documented to help over time.

Good luck this week. Please keep us posted.

Kati

Kati

Thank you! I have tried the Mucinex, but it just adds to the tiredness, so I have found by skipping it, I have more strength. The more I can do, the hungrier I can make myself.

I will keep it up with the nebulizer. I have been doing it 3 times a day, does that sound right? I have been using 9% solution because that is what came with it.

I will ask about megace. I am familiar with all the shakes etc, I feel like I just went though this....I was really hoping not to ever have to go through this again!

If you think of anything else that could help, please just let me know.

I do have an oxygen meter and I am very familiar with checking it constantly and using oxygen when I need to. Right now, I seem to stay ok as long as I use it every night.

How far along are you with this process? Are you as far as Merry?

Kim

Kim,

You are most welcome! Very interesting to hear that mucinex makes you tired; this is the first time I am reading this.

Yes, I hope that menace or another similar drug will assist your appetite.

I have been dealing with this disorder for 17 years. I had many extremely challenging years, several stable years. The difficult piece is to accept that this disorder never fully goes away

Kati

Holy cow. From everything I read this was a 12 month issue, but everything you and Merry are saying is leading me to believe this is a much longer problem.

Although I am sure the cancer will kill me before I get another 5 to 7 years, I had no idea I was going to have to fight with this for what is left of the rest of my life too.

I will have to think about this!

Kim

Kim,

Please do hold onto hope re: Bronchiectasis/NTM. I have met many people who live a good quality of life for a long time with these two conditions. Preventive measures, infection control, healthy eating, exercise, stress management are key.

There were very few articles years ago re: NTM. Based on the articles at that time, I didn’t think that I would still be here at this point in time.

Now, there are thousands of articles on this subject, a lot of research and many companies with new drugs in the pipeline.

Also, I know several people who were diagnosed with a stage 5 cancer who are still walking about.

Each case is individual. Education, support are so important when dealing with any chronic illness.

Please ask any questions. We are here to assist you on this journey

Kati

It is very hard not to get depressed.

Last year I was diagnosed Stage 3 Lung Cancer, nonsurgical. I was told them with radiation/chemo and "Preventive measures, infection control, healthy eating, exercise, stress management" that I could have a few more years.

I did all of that. Afterwards, I was only about 70 pounds and had radiation pneumonitis and found like crazy to get back in shape to 103 pounds and part time work. All that time, I complained about pain - only to have someone pay attention and go in and look and find out I had pneumonia and NTM. Now I am back to 89 pounds within a few weeks and fighting like crazy just to stay awake all day.

After hearing that people are never cured of this - I feel like any life I have left is just going to be pure torture now.

Kim

Kim,

Hello! I am so sorry to read of your multiple challenges; life is unfair. However, somehow we must start each new day with a simple goal in mind and try to make the best of it.

NTM is very challenging; however, it is not torture for many patients for an indefinite amount of time. It can put you in a roller coaster, with ups and downs. However, if one has a better chance if they follow the recommendations such as infection control, etc.

Some patients do follow the recommendations and still get a reoccurrence.

However, we cannot give up.

Have you consulted w a dietician ? Can you meet with him/ her on a regular basis?

Did you look at National Jewis website on nutrition?

Do you have a Neigborhood Community, church group that can assist you regularly?

We are here for you. Yes, I have cried a river over the years...; especially in the first few years. Now, I attempt to hold onto my faith , take one day/ week/ month at a time. I don’t understand the mysteries of life; I continue to work on acceptance

Please check in with us regularly, let us know if you have any other questions. We are here for you.

Katie

Kim, you mentioned that sputum production is not a problem for you (just the opposite in fact). That's got to be a pain in the rear, but there might be an upside if it means they can get samples for culturing easier. Since the standard treatment for NTM is 6 months past a clean sputum, it could mean that a clean culture earlier would mean a shorter treatment window. I don't want to build up a false hope for you, but it might be a good question to ask your doc, and discuss when the next culture will happen.

By the way, another tip I've heard from medical sources to help with weight gain is to eat before bedtime, especially high calorie foods. Apparently our bodies tend to "hold on" to those calories better.

Of course, for people with GERD, eating before bedtime is not the best idea. :(

Everyone

I have started taking the drug that is supposed to help with food. So far no bueno. I will give it time to do its thing though.

I am working on the sputum production with the nebulizer. I noticed yesterday in the doctors office I was pretty ok. I think I might also need to look into a dehumidifier.

Everyone tell me what subset of NTM you have. I am wondering if the subset I have, MAC's, is why they keep confidentially saying that I will only have this 12 months.

I really appreciate everyones advice, it ha been really helpful during this difficult time.

Kim

Kim,

Hello! So sorry that the megace tastes bad; I have never taken it. We can tolerate tastes briefly, washed down with something tasty if it does assist us in improving the quality of our lives.

I do hope that the NTM is resolved after a year of treatment. It is very important to take infection control measures on an ongoing basis.

I wish you the very best. Let us know how you are doing with the meagave and your we

Keep us posted, Kim. Fingers crossed that you will be one-and-done with this thing!