T790M positive on Tagrisso but unbearable pain due to pachypleuritis - 1293402

adrianm21
Posts:19

Hi
I have not been since a while on this forum, but need to be back due to mother's condition.
Background: diagnosed adenocarcinoma in 2012, have been on Tarceva for 11 months, then Alimta and carbo combination for about same duration, then Vinorelbinum 10 months, again Tarceva for past 10 months and since September 2017, as she proved to be T790M positive is on Tagrisso(Osimertinib).
Problem is starting this year she complained about pain growing in intensity on the right side, which seems to be i with pachypleuritis, revealed at last 3 scans. Doctor said it is unlikely these pains to come from the lung tumours, which were kept under control to the moment. She also suffers from gastritis, hiatal hernia and diverticulosis and whenever she eats something hard to digest, the pressure on chest grows and the pain becomes more atrocious. Also due to pachypleuritis she is meteo sensitive and accuses more intensive pain when the outside pressure is low.
Our doctor prescribed her pain drugs, even morphine based(fentanyl, vendal, sevredol, tramadol) , but none of them seemed to be effective.
If any of the patients out there experienced similar symptoms, or a doctor reviewing the forum can suggest a medicine for pain management, we would be grateful.
For any further information, please post your questions and I shall be monitoring the topic.
Thanks so much in advance.
Adrian

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Reply # - October 25, 2017, 03:31 PM

JimC
Posts: 2753

Hi Adrian,

Pachypleuritis (pleural thickening) can be caused by infection, inflammation or cancer progression, although the stable scans tend to make cancer progression somewhat less likely as the cause. I'm sorry that your mother is suffering as a result of so many issues, and unfortunately that makes it less likely that someone with similar symptoms from the same cause will shed light on her situation. Managing or treating her various conditions seems the best approach, and perhaps further workup to seek a cause for the pleural thickening would reveal treatment options which could ease her pain. It might also help to have a consultation with a dedicated pain management specialist, to find something to reduce her discomfort.

JimC
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Reply # - October 25, 2017, 04:08 PM

catdander
Posts:

Hi Adrian,

I'm so sorry your mom is in such pain. Fentanyl is the most potent of pain meds so it's most likely she isn't getting the right dose. As Jim suggested a pain specialist may be needed to get the appropriate dosage or combination of methods to deal with the pain.

It may be that the tagrisso will still help since she has only been on it for less than a month. As Jim said finding the reason for the pleurisy and mitigating it is the best way with which to deal with the pain. An interventional pulmonologist may be able to help. Cancer is likely the reason since she has lung cancer however it's possible the cause is something else. I wonder if infection has been ruled out since it would need to be managed sooner rather than later.

I hope she is feeling better soon.
All best,
Janine

Reply # - October 30, 2017, 12:24 AM

adrianm21
Posts: 19

Hi Jim and Janine,

Thanks a lot for all of your responses. Very kind of you.
We really hope this is not a reaction of Tagrisso (Osimertininb), but the cause would be something different. Discussing her situation with a thorax surgeon, apparently neurectomy in the chest box area would be a solution, but they are so reluctant, probably due to her condition and probability something wrong happens during the surgery. As for the pain management, is this a different medical specialty in the US (we are based in Europe/Romania) or yet her oncologist should deal with this?

Thanks again,
Adrian

Reply # - October 30, 2017, 07:02 AM

JimC
Posts: 2753

Yes, in the United States the American Board of Pain Medicine certifies physicians who specialize in pain management, though I don't know whether Romania or other nearby locations in Europe have a similar certification.

You might try an inquiry at your local cancer center or hospital to see if such a specialist, or perhaps a medical facility or doctor specializing in palliative care, is available near you. If not, you could try calling a local hospice service to see if they could provide you with a lead. Their staff specialize in comfort care, of which a large part is pain management.

JimC
Forum moderator

Reply # - October 30, 2017, 12:13 PM

catdander
Posts:

To Jim's excellent answer I'd like to add that in the US when a person is under the care of a medical oncologist (not in hospice) the medical oncologist often is the person in charge of pain management. This was true in my husband's case (he may well have benefited better from a specialist). There are pain management specialists in our area but he did not use one. These specialists have expertise and experience with finding combinations of therapies that fit individual cases that an oncologist might not have thought of. I wonder if a teleconference with a pain management specialist is possible.

Reply # - December 19, 2017, 12:07 PM

adrianm21
Posts: 19

Hi Folks,

I didn't reply lately, but that was for a very good reason: a new scan took place which revealed, no surprise here, reduction of the targeted tumours dimensional and numerical.
However, my mother pains were still continuing and we did a bit more investigations like an IRM on the right side which revealed arthrosis begining which led us to an ortopedist. The visit wasn't relevant though and we ended up visiting an neurosurgeon, who requested even more investigations: a cervical IRM and an electromyography (EMG). Really not sure what the doctor is after with these new analysis, but searching for a clinic who can do these tests, I have came across additional information about a pain therapy (like I havve been advised on this very forum). This therapy is called SCRAMBLE in Europe, while the patented name in US is Calmare (ironically this is the Italian name:P). Few words and results assessment here: https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treati…
Are you aware if anyone here is aware if this therapy is effective in pain treatment and if people with Pachypleuritis are having any pain relief out of using it?

Thanks in advance,
Adrian

Reply # - December 19, 2017, 12:43 PM

JimC
Posts: 2753

Hi Adrian,

I'm so sorry that your Mom continues to suffer with this pain. Unfortunately we don't have any info here on Calmare or SCRAMBLE. As the link you provided states, these therapies are relatively new and need further testing in randomized clinical trials, although the preliminary results look promising. As is often the case with a new therapy, I wasn't able to find an external sources discussing its use for pachypleuritis specifically. Of course, that doesn't mean it won't help, there's just no current data to provide guidance.

I hope that continued follow up will provide some answers and symptom relief.

JimC
Forum moderator

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