Update! Progess and a lot of Coughing!

[ChiMama]

Hey everyone! I guess I'll move my posts to the Updates section. My surgery was almost 8 weeks ago and my last update on the forum was a month ago. https://forums.lungevity.org/topic/47051-newly-diagnosed-nsclc-questions-about-surgical-options/#comments

Things have been progressing. Pain is 90% gone, except for a weird sharp pain in my upper left chest that comes and goes and I attribute to “healing pains” (or maybe due to coughing), and I still have some numbness in the incision/chest tube wound area but that's minor and doesn't feel abnormal.

My dog came home on August 6 and she's been such a comfort to me! Any time I feel sad or start to cry, she comes running in, jumps on my lap, and starts licking me. That changes my state of mind and brings me back to grounded. She's always nearby watching, and I talk to her constantly. (I actually talked to her even when she wasn't here!) She really is my emotional support!

I've finally been able to -partially- lay on my side. I'm a side sleeper and still haven't gotten used to the whole “sleeping propped up on my back” scenario. Now I sort of twist my legs and head to the side and keep my torso flat – it's a hybrid way of sleeping! I can't lay fully on my side yet as it feels super uncomfortable on the inside of my chest like my guts are moving.

I can do most daily activities again. For the most part, I can talk in full sentences without stopping or running out of breath... until I start coughing...

My biggest issue is the cough that has persisted since the surgery. It's mostly little naggy annoying kinds of coughs, half-coughs, and generally only a little bit of phlegm, but more phlegm in the evening for some reason.

Whenever I do my spirometer or breathing exercises or try to take a deep breath, it sends me into a big coughing fit. I'll start coughing and coughing until I gag and choke. Last week I coughed so hard I pulled a groin muscle! This goes on all day: coughing intermission coughing coughing intermission coughing... And I've developed a noticeable wheeze. I do not cough while sleeping or reclining.

I googled it, and it's not unheard of to have this. In references and other forums, people have said their cough lasted a couple weeks... to a couple years! Some have been told it's the internal organs shifting and causing a cough reflex, or that's it's from the scarring of the lungs or esophagus, or the healing process, or that the internal organs are shifting which aggravates hiatal hernia (which I have) and reflux (which I may or may not have). Basically there doesn't seem to be a consensus about the cause, or the solution.

My surgeon's office had no explanation and says they're basically done with my care since the cough isn't surgery-related, although they did give me a prescription for Tessalon Perles. (Which I haven't taken after reading the side effects.)

So I called my pulmonologist, who is apparently on vacation so I saw the NP in her office last Tuesday Sept 1. She was nice and very concerned that I'm coughing so much but had no explanation except for bronchospasms and inflammation.

My breathing test results look horrible. My lung capacity is pathetic. The graph bump is about 25% of what it was before the surgery. The NP said something about having “chronic obstruction/COPD” and I was like WHAT??? No one has ever said anything about that before! What she was looking at was the result of my breathing test. The visit note reads: “wheezing with bronchospasm” and “moderate to severe obstruction noted on spirometry.” That threw me into a bit of a spin! A long time ago after a mold exposure I was told I have mild asthma - but never COPD! I also had an x-ray that day and will get the results probably next Tuesday.

I left with some Symbicort inhalers, prednisone, and an albuterol “rescue” inhaler. I've been taking them as directed and was better for 2 days, was worse yesterday, and now today I'm coughing relentlessly again.

Does anyone have any insight or experience on this coughing thing? If it's a normal – or at least not abnormal - part of this, OK, but if it's not, I really need to figure out what to do. I also don't want the coughing to injure my lungs, or slow my healing any more than it already has.

Thanks so much for reading my super long post and for your input!  🐾💜🐾

[Tom Galli]

ChiMama,

I can only give you an explanation of why I coughed for a long period after my surgeries.  My entire right lung was removed and I had two subsequent surgeries within the span of 4 months to repair a fistula (leak) in sutures closing the bronchus stump. Then I had 3 stents inserted and removed to reinforce an additional weakness in the leak area. The result of all this is a very irritated airway, and one that lacks the cilia or microscopic hairs that help expel phlegm from the airway.

Now any air irregularity (pollen, smoke, dust, strong perfume, vehicle exhaust) causes coughing. The lack of cilia produces a second effect. Phlegm forms at a "ledge" caused by wound scarring in my airway, and when it gets concentrated enough, causes coughing spasms until it is expelled.

That's why I cough. I've learned to live with it. I use a Combivent inhaler before I go outside during a high pollen count day. That helps for short excursions but my best way of reducing coughing is to avoid the things that cause symptoms.

The really dangerous part of this ledge and indeed the scar tissue throughout my trachea is it is not well supplied by  blood vessels and can therefore be a place where all kinds of nasty invasive stuff can settle and cause extensive illness. So a normal cold or flu likely morphs into a chest cold and dealing with that becomes very difficult indeed. Pneumonia is a real risk and with but 30% pulmonary capacity, it is a lethal risk. My medical oncologist wrote a script for 750mg Levaquin antibiotics that I routinely start when my expectorant darkens indicating infection. I start the antibiotic right away until I can see my GP and I see my GP ASAP!

I speculate that the likely cause of your coughing is irritation. You've had a major change to your pulmonary system; one that your body has yet to become accustomed to. Coughing is the body's way of reacting to irritation to ensure bad things don't get to the lungs. So I think that is the root cause of your problem. I think the inhalers will help, especially the albuterol. I also think avoiding environments where air irritants are present is a good idea. For example, now we are nearing ragweed pollen season. I didn't have any reaction to ragweed before my surgery but now it tears me up.

I am hoping your symptoms will wane given time. Your pulmonary system will eventually adjust to sleeping positions (I couldn't sleep on either side for a long time) and some but not all air irritants. 

Stay the course.

Tom

[Lisa Haines]

ChiMama,

     Nice to hear from you and happy to see you posting and to know you are recovering.    As a dog lover and (Momma to two Rescue Chiweenie Pups), so I can totally relate to how wonderful they are to have by our side when we are not feeling well.   Unconditional LOVE and the best little companions ever, they are wonderful support and always there for us.   I happy to hear she is such a great support for you.  

    I am sorry to hear about your cough, but sadly I can't offer any suggestions as I have not experienced this.  Nonetheless I have read about it numerous times from our survivors, so I know you are not alone.  Tom shared some great ideas and my only other one is as always continue to reach out to your team.  I know I have read that many folks have taken Tessalon Perles, but again not being familiar with that med, I was  did not know about any side effects.   I think if this were me, I'd talk to my doctor about your concerns with the side effects and see what other options they may be able to offer you, if you do not have success with the Prednisone and inhalers.    I am very fortunate to be a Stage IV Lung Cancer patient who had never had a cough or any breathing issues, but I also never was a candidate for surgery and I'm sure that plays a significant role in this.

   Wishing you continued healing and hoping you'll soon have your cough controlled too!   Best wishes to you.

      Lisa

[ChiMama]

Thanks for your detailed description Tom!  I rather suspect it's like you say - irritation from the surgery, plus the bad air pollution and allergens that are going on now, along with the shifting innards thing.  When I'm walking the dog and pass a house where someone is smoking, or pass the air freshener/detergent aisle at the store, it sets off a coughing fit.  I've always had a sensitivity to artificial scents and perfumes, but my physical reaction is dramatically magnified now.

I have not yet used the albuterol, but if/when I go into a big coughing spell today, I will.  So far it's just a semi-regular annoying cough plus some upper chest clearing minor amounts of phlegm stuff.  I just wish it would stop or at least go mostly away!

Thanks again! 

 

[ChiMama]

Thanks Lisa!  (Also my name!)

My sweet girl is truly the best thing that ever happened!  She's a deer head 10 lb tall & lanky Chihuahua with a curly tail.  She may have a little weenie in her too, she's long in the body in addition to having long legs.  Chiweenies are so cute!  I'm a big Tuna fan.

I'm considering getting a second pulmonary doctor opinion.  So far the meds don't seem to be working, but I know the Symbicort takes time, and it may just be worse due to the air quality.  I'll check into that tomorrow - I forgot today was a holiday!

[BridgetO]

About Tessalon Perles: I found they worked fairly well when I had a wretched case of bronchitis a couple of months after my surgery. The pharmacist told me that they can be very irritating to the esophagus if they stay in contact with it, so to avoid problems, I should take it with a full glass of water and sit up for at least 30 minutes after taking it. I did that and had no side effects. Might not be a good thing to take if you have a constricted esophagus.

Bridget O

[BridgetO]

One more thing about Tessalon-- don't chew it or let it dissolve in the mouth. 

[LouT]

ChiMama,

I'm so glad to see you posting again.  It sounds like overall you are healing while you are having a struggle with the coughing.  I also believe that Tom is on the mark.  Your lungs have been through a lot and need some time to heal and adjust to their new normal.  Please continue to take care of yourself, do all the things your doctor recommends and keep doing your breathing exercises.  I understand it might stimulate some coughing, but if you can pace yourself to minimize the coughing then you can continue to strengthen your pulmonary capability.  Again, don't overdo it, but keep your lungs working and your body moving.  

Also, keep us updated as you continue to recover.

Lou

[ChiMama]

Belated update!  It's been a long time... I read the updates of others here as often as I can, but have limited online time as I've been busy trying to keep my finances above water.  I'm a freelancer and my main gigs involved international travel and large groups of people, none of which have been happening since March, obviously.  And being "high risk," I'm not sure when or even if I'll be able to go back when they do resume.  I'm trying to get other options going and it requires a lot of effort and focus.  Then suddenly it's December!

So.  After my last update in mid September, I saw my pulmonologist, then a second-opinion pulmonologist, then my oncologist, and I saw the surgeon for my 3 month follow-up on Nov 2.  The second-opinion pulmonologist insisted I take the Tessalon (benzonatate) to stop the cycle of coughing and give my lungs a break.  He and my regular pulm agreed (as Tom said) that it was most likely caused by irritation from the surgery and healing process.  Taking the benzonatate for a few weeks helped the coughing, and it started to ease up in mid-October enough that I stopped taking it.  By the end of October, I was only coughing when I talked a lot and basically ran out of breath which triggered it.  By mid-November I was 90% cough-free!

The only time I cough now is when I hit a pocket of artificial scent somewhere, or encounter other irritants like a couple of days ago when I breathed in smoke from burning something on the stove 😳, or once in a while I'll just have a random spell of it.  But once a day or so is such a relief compared to how it was for the first 3 months when it was so constant I thought it was going to last forever and it was really wearing me down!

It's been a longer and more challenging recovery than I expected.  I still get random heart palpitations, tire easily and have 25% of the stamina that I used to have.  My O2 levels are good, my bloodwork was good, CT on Oct 1 showed a small pleural effusion but none of my doctors are concerned.  I have a weird hollow sound when I breathe, wheeze sometimes, and I get out of breath during activity and randomly for no apparent reason, but maybe those things are normal with an upper lobe being removed?  All my doctors have said I'm doing really well... The surgeon has pronounced me "cured."

So here I am 5 months later.  The healing continues!  Thank you to all in this group for sharing your insights and support!

[TJM]

ChiMama

I have sone similar symptoms to you. Had the cough end of Aigust and took Codeine cough syrup.  I have zero concerns about any side effects after doing surgery, chemo and radiation.  Doubt there are any med side effects that can top that. Results all I care about and the cough syrup did the trick straight away

Reason I am posting is that ever since the surgery (in February) I have felt bloated, pain and numbness on my right side.  I'm in the middle of trying to figure out what's up (probably a recurrence) but they have bee watching some pluerl effusion, that also doesn't worry my docs, but I convinced them to have it drained on Monday. I am sure they will check it for cancer but my hope is it helps my breathing. I have gone backwards since August. They also found a,mass that one onc thinks is scar tissue and the other malignant. My PET scan today hopefully answers that.

I'll let you know how it goes. If fluid is a problem I should notice improvements pretty quick. Not a permanent fix but answers some questions.

Peace

Tom

 

[LexieCat]

Good to hear you're coming along, ChiMama. I've been dealing with the chemo/immunotherapy drill as a result of my Stage IV diagnosis in July, but just completed the primary therapy and have started maintenance therapy--so far, so good--my doctor considers it a "complete response." It's been a pain at times but not as bad as some people's experiences so I'm grateful.

I STILL have the sharp twinge near my incision when I take a sharp intake of breath (cough/sheeze/yawn) from my lobectomy three years ago. I don't consider it "pain" and it doesn't really bother me. That's the ONLY physical effect I feel from the surgery. My breathing is the same, O2 generally 99 percent, no shortness of breath, and no more coughing than normal. I did have a lot of coughing for several weeks after the surgery. Nobody was worried about it and it did resolve itself. Breathing steam in the shower has always helped me when the coughing/occasional wheezing hits. 

I think (and hope) you will continue to feel better. Do stay on top of those follow-up scans, though. I'm hoping you are "one and done" but I got three whole years out from my (then Stage Ib) diagnosis and lobectomy, only to discover either a recurrence or a new, unrelated cancer (docs can't say which) in the other lung, which had spread to lymph nodes and to tiny spot on my sacrum. Compared to chemo/immunotherapy (I haven't had radiation), the surgery was a piece of cake.  

Keep on keepin' on!

[GaryG]

ChiMama  Congratulations. It looks like you are going up and down the healing process as a result of a serious operation. Being free of cancer should be the ultimate goal  and it is worth some hiccups. All the best.

[LouT]

ChiMama,

Thanks for the update.  Everybody heals differently.  In your case, it seems to be going on a bit longer, but at least it's progressing forward and that is the key thing to look for.  Keep on taking care of yourself, eat well, rest often and do whatever physical exercise you can tolerate.  Stay strong...

Lou

[Tom Galli]

ChiMama,

Almost 17 years from my surgeries, I still occasionally have symptoms you describe. Welcome to the new normal. Go safely make a new life, consistent with extreme caution from COVID.

Stay the course.

Tom

[Dallasdoug]

If you haven’t read Tom’s Scanziety, you should.

it is an amazing, uplifting story.