Extreme fatigue after steroid tapering... - 1249094

Hi Carrie, I'm so sorry your dad is on this roller coaster. I've often read about the problems of steroid tapering and know it's a very individual process. Your questions are interesting and I'll ask a doctor to give input on them. You should hear back with the day.
I hope your dad is able to find that balance,
Janine

Unfortunately, there are no real answers to your questions. As Janine said, it's an individualized process, and we just need to make inferences about what to do based on the trends. There are certainly a few patients who just can't be tapered off of steroids and do much better on higher doses -- but there are many potential contributors here in terms of the "why?" and what it means for the cancer. I think the real answer is that nobody knows...it's all going to be empiric testing, and we're happy to just see people do symptomatically better. In particular, the productive cough of mucinous BAC (bronchorrhea) is notoriously hard to treat, but we tend to believe that if that symptom is better, it represents a good change in the status of the cancer. There isn't any conclusive evidence to speak to that, however.

It's very common for people to become fatigued from a taper of the steroid dose, since steroids I boost energy levels and the body gets used to the added help and decreases its own endogenous steroid production until it's pressed to make more again. I personally wouldn't have any enthusiasm for using energy drinks as a treatment for that, in light of the potential interactions of them with medications and normal physiology.

Good luck

-Dr. West

The only thing I would wonder is how big is the decrease in steroids during the taper. Perhaps decreasing in smaller increments and adjusting to that might help? Just a laymen's thought. --mikem

Good thought, and we also sometimes do better with a slower taper, maintaining the same dose level for longer.

-Dr. West

Hi Everyone,
As my sister Carrie outlined above, our dad has been through ups and downs lately with his fatigue, which we thought was related to steroid tapering. We made an appointment with his GP to discuss putting him back on higher levels and tapering much more slowly to see if that had an impact.
As we were preparing for the appointment he started going downhill fast. He had very little energy, flushing and rapid breathing. And his coughing was increasing, although he wasn’t bringing up much at all. His pulse ox had dropped to 88 while resting (he’s always been around 94). We began to believe that this was more than just a steroid tapering issue and more of a pneumonia one. After talking to his GP on Sunday night he was immediately started on Levaquin with a follow up appointment on Monday.
His GP had him walk around with him down the halls with the pulse ox monitor to see what his rate would drop to when he was active. It fell all the way to 80. He put him on oxygen and breathing treatments and upped his prednisone. He’s currently on the following schedule:
• 60 mg prednisone (up from 20 mg)
• Symbicort inhaler (2 puffs twice a day)
• Levaquin (750 mg daily for 7 days)
• Albuterol (every 4-6 hours, up to 5 times daily)
• Fragmin injections (he had a blood clot in Spring)
• Oxygen (2 liters)
After being on this treatment schedule for the past two days he’s felt better. Not great, but improved. The difference with the oxygen is night and day – his color is back and he’s more comfortable. Overnight he was able to bring up around a ¼ cup worth of think yellow mucus; something that hasn’t happened for a long time. He also felt like the pressure was decreasing in his chest.

(Part 2 of this post to follow below)

(Part 2)
Our hope is that this is pneumonia and that we’re treating it properly. We believe he might’ve gotten a bug while on vacation a month or so ago while he was at his lowest steroid level (5mg) and that he didn’t have the ability to fight it. The reading I’ve done suggests that a person with adrenal issues might need twice to three times their normal steroid dosage during times of fighting an infection.
I’ve got a couple questions for the group.
• Does this sound like a pneumonia infection? Or does this sound more like the BAC advancing? The fact that after starting the antibiotic he’s started to bring up the thick mucus is a good thing I would think, right? That the drugs are working and it’s starting to clear it up by bringing it up?
• I’ve always worried that once he needed oxygen that it would mark the beginning of the end. Do you find this to be the case or do you have patients that need it for times like these then go off of it?
• We’ve only had one type of treatment, aside from a lobectomy when this started, in the form of Altima/Carboplatin. After initially shrinking the cancer to an extent it then held it in place. Subsequent scans after his last round – which was a year ago – showed that it wasn’t growing significantly without treatment. Our dad had an allergic reaction to his last round so that was discontinued. Would it make sense to start on a 2nd round drug like Tarceva? Would it be wise to do that while he’s battling pneumonia or would that bring his immunity even further down?
I know that there’s only so much that can be said about a patient that’s not in your care. I’m just trying to get a feel for this and not delude myself into thinking it’s just another infection if that’s not the case. Is there any way to know?
As always, thanks you guys for being a place for people in our situation to turn to.

-Jim

I'm sorry for the discomfort your father's been in. Just as a patient who's had it - full-blown pneumonia usually involves a temperature, and causes crackling sounds in the affected lung that a doctor should be able to hear. You can generally see it on an X-ray, and your father could also have a sputum sample taken to analyse any micro-organisms. My point is that his doctors should be able to exclude or diagnose pneumonia quite easily.
And on your Tarceva question - unlike chemotherapy, it doesn't affect the immune system.
I may be wrong but I'm pretty sure that being on oxygen doesn't necessarily signal "the end". Respiratory distress can be temporary - it depends what's going on in the lung. Best to your dad.

Thanks for the fast reply CS. He had a low grade fever going into this that I neglected to mention. We're going in for a CT scan tomorrow to see if anything has changed since the last one. I've been told that x-rays are relatively useless now, as his lungs are so cloudy that it's very difficult to differentiate the cancer from an infection. I'm curious as to how long it might take to get over this if it is in fact pneumonia. He has a follow up with his pulmonologist on Friday to review the scan.

And with the crackling - he's had that off and on since he was diagnosed with BAC, so it's hard to determine a difference. The only time it really went away was when he was on prednisone.

I'm glad to hear that about Tarceva. I've always looked at the different treatments available for BAC as bullets in a gun. We already fired the Alimta/Carbo bullet to great success - it's gotten us this far. We might be getting close to firing the Tarceva bullet.

My goal is to stretch this out as long as possible, with the hope that in the meantime advances are being made in the field. The longer we can go without having to use another bullet the better.

It's hard to believe that we're coming on the 5 year anniversary of his lobectomey. Reading the stories of others we feel blessed to have had relatively good health this far with treatments that haven't significantly impacted his quality of life.

Hi Jim
I'm glad to hear your dad is feeling better. It's half of the goal in treatment.

I'll contact a doctor to see if what additional info can be offered.

Janine
Forum moderator

With BAC, it can actually be pretty hard to tell the difference between progression of the underlying disease and a superimposed pneumonia or occasionally an inflammatory process. They really all look pretty much the same on imaging. If something doesn't fit the time line of the prior pace of the disease (e.g., it came on over days or weeks when the cancer was previously progressing slowly over months to years), that gives a clue that something else may be going on. It certainly makes sense to try to treat the reversible things, such as with steroids and antibiotics, and then see whether things improve. Those interventions should help with infection and inflammation but not with cancer, so that's a way to help clarify what's cancer and what's not.

Related to these issues is the question of whether needing oxygen is "the beginning of the end". One implication of there being potential non-cancer explanations for worsening is that these issues may reverse, in which case, you wouldn't expect it to be a rapid decline. At the same time, some people can decline on a very slow and steady pace from their cancer for many months or even years, so even if it is from the cancer, that doesn't mean that there's a cliff to fall off of.

Finally, there's reason to have hope about further therapies, such as Tarceva (erlotinib), or potentially a different chemotherapy -- the people who do well on one form of chemo often benefit from subsequent chemo. But I think it doesn't make a lot of sense to add something with potentially significant side effects to an unstable situation in which you're not sure what imaging findings are from cancer vs. non-cancer causes. Instead, it makes the most sense to initiate a new anti-cancer therapy when things are as stable (and optimized) as they can be.

Good luck.

-Dr. West

Hi Jim and Carrie

I wanted to echo Dr West's comments, that it is very hard, especially with BAC, to differentiate between infectious processes and worsening cancer, and often there may well be a mixture. Usually i have a very low threshold to start antibiotics (and sometimes steroids) particularly if there is any colour in the sputum (yellow or green) and if there is any sign of a fever.

The fatigue you describe coming off steroids is very common, and my patients often ask me if they can just stay on them to avoid this "crash". unfortunately long term steroids also have significant problems associated with them, so when possible i minimize steroid use, and try slow long tapers.

Though i agree it is best to start a new chemotherapy treatment, such as Tarceva, when things are going relatively well, sometimes we don't have the luxury of that time. Clearly it's a discussion to have with the medical oncologist, but if the infection seems to be improving it may be time to consider the next line of therapy. The main advantage being that it has no immunosuppressive side effects.

Best of luck

Dr Laskin

Thanks so much for the replies Dr. West and Dr. Laskin. Our dad goes in for a CT scan today with a follow up tomorrow with his doctor. We'll update you as to the results.

In my non-expert opinion, I believe that he may have been experiencing fatigue as a result of coming off of the steroids which left him more prone to an infection. At that time he developed pneumonia which was even harder to fend off than it would've been had he been on the same level of steroids that he was previously. Our hope here is that the antibiotics take care of the infection and that he can continue his higher dose of prednisone until he's been stable for awhile and gotten his legs under him. At that point we can plan a long, slow taper.

He's been feeling better each morning he's woken up since starting the antibiotics. He continues to cough up yellow sputum since starting, but the fever/headaches have subsided and he seems to be on the road to recovery. His pulse ox on the oxygen is staying around 96. We're keeping our fingers crossed/saying our prayers that the antibiotics will be enough and that no further procedures will be needed to get rid of this.

Thanks again everyone!

Great appointment at the pulmonologist today. Everyone is in agreement that this is most likely a pneumonia. The CT scan was described as "a little bit worse", which was chalked up to the pneumonia. As Dr. West has stated, it's hard to tell the difference between an infection or a spread of the BAC on the scan. But all of the symptoms, and the fact that he's felt progressively better each day on antibiotics, has everything pointing towards pneumonia.

The game plan is to continue the antibiotic/steroid protocol for another week. The only thing I'm wary of is that the pulmonologist has him starting to taper off the prednisone beginning next week. His plan is to drop 10mg weekly - starting with a reduction to 50mg on Monday.

My question is this: is there a reason to begin tapering already? Is there any harm at continuing at 60mg for awhile longer? Based on his symptoms the past couple months we realy believe he was experiencing adrenal problems related to a fast steroid taper which left him in a compromised position, and eventually, with pneumonia. Might he be better served by tapering at a much slower rate, over the course of months rather than weeks?

I only ask for an answer in generalities; I know it's impossible to tell us what the right course is for his specific case.

Regardless, we're very happy with the way his appointment went today. It makes for a great weekend, which I wish for all of you.

-Jim

Prolonged steroids are associated with a significantly higher risk of immunosuppression, so a taper for a very long time would increase the risk of a severe infection like a fungal pneumonia. They are also associated with other risks as well, ranging from fluid retention to muscle weakness. We really don't want people to be on steroids for any longer than they really need to be.

-Dr. West

Hi all! I've got an update and a couple questions on our dad.

We've been in and out of the hospital since Christmas. Dad was headed downhill as you can see above, and it eventually required us going into the ER. He had a rough couple days, to the point that he was at the edge, but he came back and gave us the best Christmas gift ever.

This happened after they began treatment with broad spectrum antibiotics. Over the course of the next week he got to the point where he didn't require oxygen when he was sitting. This was HUGE progress.

A couple weeks went by and he started to regress. He needed more oxygen and his pulse ox was down. There was increased mucus production.

We brought him into the ER and the CT scan showed dramatic improvement in the pneumonia. The pulmonologist was puzzled - the scan looked better but he was having more trouble breathing. His diagnosis was a bronchitis that he had gotten during recovery. He's on prednisone so his immunity is down of course.

We're still in the hospital after making much progress with a MetaNeb machine. He was regaining strength and we were discussing discharge when he was hit with a pulmonary embolism. So that pushed everything back as he struggled to deal with that. A week went by with no MetaNeb, and in the meantime the mucus has started to plug his airways again.

He was given a MetaNeb treatment last night, even with the risk from the PE, because something had to be done. This morning he was refreshed and hungry - he ate a ton. This afternoon he's gotten very tired and the amount of mucus the machine dislodged is hard for him to bring up.

This brings me to my questions:
-His mucus is brown in color. Can a mucinous BAC generate that type of sputum? Or does that point more towards an infection that hasn't resolved?
-He can't have another round of Alimta due to the prednisone. If BAC is the cause for the mucus, could Tarceva be suggested as a means to beat down the BAC and stop the mucus?

Thanks!
-Jim

Hi Jim, I'm so sorry to hear of the roller coaster ride your dad and the family have been on. I know it is absolutely one of the most stressful types of situations possible. Though it is fabulous he's having good days/moments.

I will ask a doctor to comment on you question. You should hear back within the day.

In the meantime there are several blog/posts written under the subject/tags elder or frail that will help give you a base to stand on. Tarceva is certainly an option for many people who have co existing problems.

I hope a balance of support and treatment can be found to help him get home.

Janine
forum moderator

Sorry Jim, I didn't mean to leave you without any links to start with. Note: when doing your own search on Grace you may need to log off the site first depending on the browser your using.

http://cancergrace.org/lung/files/2011/10/dr-lilenbaum-on-treating-lung…
http://cancergrace.org/lung/2010/05/15/adv-nsclc-in-poor-risk-hesketh-k…

Brown sputum wouldn't be expected from mucinous BAC, but it's definitely possible. And while Tarceva (erlotinib) could potentially be used to treat the BAC, the BAC patients most likely to benefit from it are those with an EGFR mutation, who are almost always those with non-mucinous BAC. Though there are always potential exceptions, mucinous BAC is very rarely found to have an EGFR mutation and tends to not have dramatic or prolonged responses to Tarceva.

-Dr. West