Lung Cancer, Pleuritis and Radiation - 1246388

rf1942
Posts:19

My wife finished six chemotherapy treatments of Carboplatin, Alimta and Avastin for Stage 4 Lung Cancer about 4 weeks ago and had a PET/CT Scan about 10 days ago to assess chemotherapy results. Her results were very positive with one active cancer spot on in her left lung. Unfurtunately, this spot is causing very painful pleuritis which at times is very debilitating for her in terms of the pain. She will start 15 radiation treatments on Monday to treat this one major cancer hot spot and try to take away the pain she is experiencing. My question is whether there are other ways to reduce the pain. She takes Oxycontin (30mg 2 or 3 times a day), Delaudid (4 mg as needed since this started; she had been on 2 mg.), Ativan (one-half to one mg about 3 times a day, and Prednisone (20 mg twice a day) since the pleuritis began a couple weeks ago. She is essentially non-functional due to all the pain medication but cannot do without these meds on most days. Could the Prednisone be increased. I know she took 80 mg. a day the first three days she had the Pleuritis and that seemed to help. She is on Lovenox for blood clots so cannot take Naproxyn, etc. Would something like a Fentanyl patch control the pain any better because even with all these pain meds she is never completely free of mild to moderate pain in her left side and shoulder. Are we going to have to wait and see if the radiation relieves the pain or is there some other alternative available? For instance, I have spinal stenosis and get periodic epidurals which help greatly for 3 or 4 months minimum. Are there any long-acting numbing shots that would help this kind of pain. Any ideas would be appreciated. It is so frustrating because she was beginning to feel so much better a couple weeks ago before the first indications of pleuritis. She will also be continuing on Avastin and starting Tarceva since she tested positive for the genetic marker for certain adenocarcinoma cancers that make her an excellent candidate. Ideas?

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Reply # - August 6, 2012, 06:55 AM

catdander
Posts:

rf, Welcome to Grace. I'm so sorry your wife is having so much difficulty in the face of good chemo results. I am just a moderator with no medical background. What I know about lung cancer almost entirely comes from Grace. After doing a search I found nothing about pleuritis or pleurisy on this site and nothing much to add from a quick google search.

One thing I will say before leaving is that radiation when effective can diminish pain to nothing and relieve the need for other pain meds.

The best thing is to ask a doctor to comment on your question. I'll do that and we should get that comment within the day. Until then subscribe to this thread and any other thread of interest to you. We will move your thread when you receive an answer to a permanent home in the proper forum. Your address and link to will not change though.

Thank you for asking Grace and being such a help to your wife,
Janine
forum moderator

Reply # - August 6, 2012, 07:46 AM

catdander
Posts:

I would like to point you to some helpful blog/posts written by our faculty. You may know this but much excellent information can be accessed through our search feature. It actually works very well.

Steroids can be a very helpful drug but needs to be titrated up and down with much individual care (that's where someone like a husband who can watch for side effects comes in very handy).
Opiates are remarkably helpful and it sounds like your wife is taking advantage of them. But like you said they can be difficult to maintain a normal life style on.

These first 2 I've not read/listened to only because they have just been transcribed and I missed the original webinar. The first is a description of palliative care which is loosely aka the balance of tx with quality of life and symptom management.
http://cancergrace.org/cancer-treatments/2012/07/26/what-is-palliative-…

The second is exclusively about pain management http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…

The next 2 are blogs I've referred to often. They may be redundant with the new podcast available but they are very good.
http://cancergrace.org/cancer-treatments/2009/07/02/cancer-pain-101/
http://cancergrace.org/cancer-treatments/2009/07/11/opioids-101-opioid-…

This is an overview on steroids, http://www.mayoclinic.com/health/steroids/HQ01431

I hope this helps,
Janine

Reply # - August 6, 2012, 10:40 AM

rf1942
Posts: 19

Thank you for the helpful information Janine. I have used the GRACE blog to get information before and am a current subscriber. Please feel free to post my question in any way you wish. i will check out the links you have provided and look forward to any responses to my questions from doctors later today or tomorrow. Today is my wife's first radiation treatment and I am so hopeful that radiation will bring relief to her over the next three weeks of treatment.

Roland Fleck

Reply # - August 6, 2012, 12:08 PM

catdander
Posts:

Roland, I didn't recognize your username. Hi! It's really terrific your wife did so well on chemo. I'm really stuck though because I don't know anything about Pleuritis and how it relates to lung cancer and radiation. I looked it up enough to find out what it is but didn't find anything on a quick google search. When you have the time please make a signature, a brief chronicle of treatment and results since dx. That way the doctors will always have context with which to read your requests. Click on your user name and edit your "signature". I could keep up with you better too.

This is a good place to explain some changes in how Grace faculty access threads, like this one, on which to comment.
In the past Dr. West along with one or two other doctors would sweep the forum for opportunities to contribute to the discussion. Now, we (not me) have compiled an impressive list of doctors from which we (Jim and I) can access for comment. This widens our collective brain power very nicely. That takes a tremendous amount of pressure (I hope) off Dr. West and Dr. J Weiss' shoulders and many others. Moderators now sweep the forum and request comments. I do feel a bit too gatekeeper-ie sometimes. But it opens up the forums to a larger body of knowledge. Dr. West usually does a sweep in the evenings but don't take my word on that. He may want a day off someday. :wink:
So, the doctor will comment to your question not mine.

Please keep us posted.
Janine

Reply # - August 6, 2012, 01:03 PM

catdander
Posts:

Oh, I think pleurisy with lung cancer must refer to the pain caused by invasive growth into the pleura. With radiation your wife will surely start to feel better really soon.
Doctor West?

Reply # - August 6, 2012, 04:03 PM

Dr West
Posts: 4735

Roland,

I'm very sorry to hear about your wife's pain. I would be most optimistic about radiation, and I think that has a greater probability of leading to significant pain relief than tweaking her pain regimen, including by adding a fentanyl patch -- though a fentanyl patch is perfectly good, I think it would likely be essentially more of the same thing. I'd be especially hopeful about the radiation if it hasn't been very long since she started radiation.

One thing I might consider is a lidocaine patch. It's good for pain related to healing/scarring of the underlying skin and chest wall, and perhaps it might be helpful for a pleuritic-based nodule causing inflammation.

Because steroids have a wide range of symptoms, particularly at a higher dose like 60-80 mg of prednisone, we generally don't consider this as a sustainable fix. Hence the focus on the other alternatives.

I do hope she gets some relief soon.

-Dr. West

Reply # - August 6, 2012, 05:13 PM

rf1942
Posts: 19

Thank you Dr. West for the very helpful information. My wife Dorothy just started radiation today so I am hopeful for good results. It is just that she has been in so much pain the past two weeks from the pleuritis. We do have lidoderm patches that we had from some other pain in her back earlier in treatment. Would it be acceptable to put the patch over a spot where the radiation has been directed or do I need to avoid those marked areas? Thank you.

Roland Fleck

Reply # - August 6, 2012, 07:42 PM

Dr West
Posts: 4735

That I'm not sure of. I'd check with a radiation oncologist and/or pharmacist to see they have any insight. I'll try to reach out to Drs. Loiselle and Walko.

-Dr. West

Reply # - August 6, 2012, 09:06 PM

rf1942
Posts: 19

Thank you Dr. West. I will wait to see if one of the radiation oncologist or pharmacists give any view on this and will try to talk with my wife's radiation oncologist about this later this week when we see her. But any information before then would be appreciated. Thank you.

Roland Fleck

Reply # - August 6, 2012, 09:57 PM

dr loiselle
Posts: 37

Hi Roland,

I too am optimistic about the potential benefit of radiation therapy for this pleuritis.

The lidoderm patch to this area will not interfere with radiation therapy. I would be fully in favor. However, the therapists conducting daily treatment may need the authorization of your treating radiation oncologist, as they likely have standing instructions that there is to be nothing over the skin of the treatment field. In some circumstances, having a patch of various sorts can raise the radiation dose to the skin. With a lido patch, this effect is not significant enough to be of concern.

The fentanyl patch may help too if the opiates are causing drowsiness etc by lowering the peak blood levels of the opiate (and raising the trough).

I hope this helps.

Dr Loiselle

Reply # - August 6, 2012, 10:21 PM

rf1942
Posts: 19

Dear Dr. Loiselle,

Your information is so helpful. I will call the radiation oncologist tomorrow to see if we can use Lidoderm patches on the area. Also, I would like to try Fentanyl patches. My wife gets very drowsy and cognitively confused when I have to give her a large amount of Delaudid (4mg at a time usually 3-4 hrs apart but sometimes as little as an hour or two apart when she is in extreme discomfort from the pleuritis) on top of the Oxycontin (30 mg three times per day). I guess to be perfectly honest her drowsiness, cognitive confusion and general chemo brain bother me more than her as I am so used to her being so intellectually stimulated as she has been a clinical supervisor for marriage and family therapist interns for years and her brain was in high gear 24/7. I am a Professor of Psychology so we had much in common over the past 48 years of our married life. I hope that the radiation takes the pain away because I do know that the less the pain medication she takes the clearer she gets. This was obvious as I was able to lower her doses after the first two or three chemotherapy treatments. Do you think the Fentanyl patch would make her less drowsy and cognitively slowed? Thank you again for whatever information you can provide.

Roland Fleck

Reply # - August 7, 2012, 05:28 AM

dr walko
Posts: 102

Roland,

I will chime in too, based on Dr. Loiselle's response, you may want to consider putting the lidoderm patch on during the 12 hours over night or at a time when it would be off during the radiation any way (since the lidoderm patch should be used for 12 hours on, 12 hours off).

The only other things I will note is that sometimes the patches themselves can cause skin irritation, so if any occurs, I would stop them. Also, it is not known exactly how radiation changes to the skin will change the delivery of the lidocaine from the patch itself. Based on this, I would limit to only one on the area and stop using them if any significant skin breakdown occurs since this can cause more of the drug being released into the body and possibly toxicity. Additionally, changing in skin temperature can also increase or decrease the amount of drug released from the patch so if the skin gets really hot to the touch, I would avoid using the patches.

In terms of fentanyl patches, theoretically if the correct dose of the patch is used, the level of pain relief should similar to what she is already receiving. It sounds like she may need to increase the long acting (Oxycontin) medication which should be taken regularly (usually twice per day) to optimize the benefits. Though some patients have less sedation with the fentanyl patch, this may be her body adjusting to needing higher amounts of pain medication. You may want to consider a stimulant agent like methylphenidate to allow for increasing the pain medication but also decreasing the sedation effects.

Best wishes,
Dr. Walko

Reply # - August 7, 2012, 11:48 AM

rf1942
Posts: 19

Thank you Dr. Walko for the information. I will try to discuss all of this with my wife Dorothy's Radiation Oncologist today or tomorrow to get her view. I had not thought at all about the possibility of Ritalin but i will discuss that with both of her oncologists. I cannot tell you how much I appreciate the information that you, Dr, West and Dr Loiselle have provided me. I need to be able to figure out things and I feel very helpless at time as to what to do to relieve her discomfort. I am so appreciate of the information and help.

Roland Fleck

Reply # - August 11, 2012, 08:53 AM

certain spring
Posts: 762

Hallo Roland, I just wanted to offer my sympathies to your wife. Pleuritic pain can be awful and I am glad the doctors have been able to offer such useful insights. I hope the radiation helps.
The balance between pain control and being able to have a coherent conversation is hard to get right. I can imagine your dismay at seeing your wife so changed. But I am sure that if they can sort out her pain, she will be more the person that you recognise. I have been in situations with my husband where I couldn't form a sentence, but his mere presence was immensely reassuring to me. Best to you and your wife.

Reply # - August 11, 2012, 11:41 PM

rf1942
Posts: 19

Hello "certain spring",

I do not know your name but I really appreciated your post from earlier today. It has been very difficult to have the love of my life for 50 years to be diagnosed with Stage IV NSCLC in February, 2012, but it has been especially difficult to see her in so much pain on a number of occasions. She had a bout of pericarditis in late May and now this pleuritis has really been painful. Thankfully, I do believe that after 5 radiation treatments that her pain is reducing and I do hope and expect that to continue over the next two weeks of radiation. Radiation has made her very tired and of course the high level of pain medications make a cognitively a different person than what I have experienced throughout our life together. It was comforting to read about your experience and to see how you have obviously been able to find the balance of med that has allowed you to have cognitive clarity. That is very hopeful for me. She has also tested positive for the EGFR genetic marker and will start Tarceva (100mg) on Monday. She received another Avastin treatment on Friday and that will continue every three weeks. I do hope that she can tolerate the Tarceva which I realize does not tend to have major side effects but she carboplatin and alimta were very difficult for her with multiple side effects. She is currently somewhat anemic again and had a Procrit shot yesterday to help with that. I understand that radiation can also contribute to lowering hemoglobin. I hope that effect is not as great as what carboplatin has done to her in the past. Good luck with your continued treatment and I wish you health and quality life. You sound like a very special person. Thank you again.

Roland

Reply # - August 12, 2012, 02:52 AM

certain spring
Posts: 762

That is fantastic about the EGFR mutation. I am sure one of the doctors will correct me if I am wrong, but I think having the mutation tends to make cells more responsive to radiation. I hope your wife gets on well with the Tarceva, and gets great resulsts. People vary enormously in how bad their side-effects are, but I personally found it a great deal easier than chemotherapy (I'd had carboplatin/gemicitabene, and had needed a number of blood transfusions).
You are very kind in what you say. Every marriage is a mystery but I think my own has actually been strengthened by what has happened. I know that many spouses or partners feel a terrible sense of powerlessness, but as the person with the illness I can testify that my husband's love and steadiness has made it much easier to cope. From my side, I do fear that I am becoming, at best, a boring invalid, and that ultimately I will be dependent on him in ways that we willl both find very difficult. But I have confidence in him, as I am sure your wife has faith in you.

Reply # - August 12, 2012, 02:07 PM

Dr West
Posts: 4735

There is certainly some suggestive evidence that EGFR mutated cells are more responsive to radiation, though there isn't a lot of evidence on that topic in clinical outcomes at this point. The association of good responses of EGFR mutated cancers to Tarceva is far, far clearer, so there is at least good reason to be optimistic about the beneficial effects after starting that.

-Dr. West

Reply # - August 12, 2012, 10:10 PM

rf1942
Posts: 19

Dear Certain Spring,

Thank you for your comments about your own marriage. I certainly do feel that helplessness with my wife especially when she is in the kind of pain she has experienced with the current pleuritis. And I do think that she feels like a burden to me at times although I do not feel that and feel closer to her than ever. I am a professor and chair of a department of psychology at a university here in San Diego but I can hardly focus on any of that since her diagnosis in February as I see her as my main responsibility at this point in time. I know she would do the same for me. It is difficult when she is cognitively confused from all the pain meds because I know how good her brain is under normal circumstances and that intellectual connection has always been such a significant part of our relationship.

I am very hopeful that the Tarceva and radiation are very effective with my wife Dorothy and that she tolerates the Tarceva well. Carboplatin and Alimta were very difficult for her and she like you had multiple transfusions because of severe anemia. I am sure that your husband feels very similar to how I feel based upon how honest, open and caring you are. I wish you the very best and keep you in my thoughts.

Reply # - August 12, 2012, 10:14 PM

rf1942
Posts: 19

Dear Dr. West,

Thank you for your comments about the effectiveness of Tarceva and radiation with EGFR mutated cells. I do hope my wife tolerates Tarceva well as she will start it tomorrow. The pleuritis has been very painful but I do think there has been some reduction in the pain after five radiation treatments. She is scheduled for a total of 15 fifteen radiation treatments. Thank you for all the valuable information you provide.

Roland Fleck

Reply # - August 13, 2012, 08:59 AM

laya d.
Posts: 714

Hi Roland - -

I'm a little late seeing this post, but am so happy to read of your wife's activating EGFR-mutation status. Hopefully, she will do fabulously with radiation, followed by a very very very long run on Tarceva (with minimum side-effects). Please keep us posted.

All my best,
Laya

Reply # - August 13, 2012, 11:34 AM

rf1942
Posts: 19

Hello Laya,

Thank you for your words of support. I really do appreciate it as it is a tough and at times discouraging struggle. We started Tarceva today and I am hopful.

Roland

Reply # - August 13, 2012, 06:57 PM

rf1942
Posts: 19

Since starting radiation 8 days ago my wife has had very little appetite. Of course she has also been in a great deal of pain due to the pleuritis which obviously effects appetite. Howver, the pain has reduce some and I am wondering if radiation treatment does reduce appetite as she has had much less of an appetite. I would appreciate any input on this issue. Thank you.

Roland Fleck

Reply # - August 13, 2012, 07:23 PM

JimC
Posts: 2753

Hi Roland,

With regard to radiation and loss of appetite, Dr. West has said this:

"Loss of appetite can occur when radiation is directed to the abdomen or spine that is at the same level as stomach, bowel, or liver. But it would be quite uncommon as a side effect of radiation to a metastasis in the pelvis." - http://cancergrace.org/radiation/topic/sbrt-for-pelvic-bone-lesion/#pos…

JimC
Forum moderator

Reply # - August 13, 2012, 09:20 PM

rf1942
Posts: 19

Hello Jim,

Thank you for the information about radiation and loss of appetite. My wife's radiation is directled at the lower left lung where she has pleuritis and may be slightly effecting the stomach although she has had no nausea although her radiation oncologist has her take a Compozine pill an hour before teach radiation treatment. Maybe it is just the level of pain she has experienced over the past three weeks from the pleuritis but it does seem she has even less appetite since the radiation started on August 6th. Thank you for responding to me so promptly.

Roland

Reply # - August 14, 2012, 01:06 AM

certain spring
Posts: 762

I suspect the loss of appetite may have less to do with the radiation than with the pain, and the pain medication your wife has been on. That can induce constipation, which in turn makes it hard to eat - though it is encouraging that your wife has no nausea. It might be worth asking the doctor about Megace, which seems to help stimulate appetite in some patients.
Let us know how your wife gets on with the Tarceva.

Reply # - August 14, 2012, 08:22 AM

double trouble
Posts: 573

I found that compazine made me very agitated, and had to stop taking it. My primary care doctor said that it affects "some people" that way, so I got the impression that it is not a common side effect. I'm wondering if that might be the medication that is making her lose her appetite?

Chemotherapy also made things taste different to me, and many foods were very unappealing for quite a while after I stopped treatment. I didn't want anything because none of it tasted good.

I hope you get it worked out. It is very hard when a loved one is having these symptoms. My heart is with you and I will be watching for your updates.
Debra

Reply # - August 14, 2012, 10:00 AM

rf1942
Posts: 19

Hello Certain Spring,

Unfortunately my wife had to stop taking Magace about 6 weeks ago when she had another blood clot in her neck, right shoulder and arm. When she was first diagnosed she had multiple blood clots and the feeling of the doctors was six weeks ago that Magace may be contributing to an increase in the risk of clotting. It was very helpful to her for her appetite once she got used to the taste and texture of it. She currently is taking Marinol but I am not sure how much it helps her appetite. You are probably right that pain is the most likely culprit for her diminished appetite. Thank you for your input.

Roland

Reply # - August 14, 2012, 10:06 AM

rf1942
Posts: 19

Hello Debra,

Thank you for your kind and supportive comments concerning my wife Dorothy. Yes, I am aware that Compazine can have agitating side effects for some people but she is tolerating it well so far. I suspect her loss of appetite is related to her ongoing pain, residual effects from Carboplatin/Alimta chemotherapy, and her inability to continue taking Magace. My best wishes and thoughts are with you in your continued treatment and hope that you are doing well.

Roland

Reply # - August 14, 2012, 11:00 AM

certain spring
Posts: 762

I'm sorry Roland, I had forgotten your thread about blood clots and the Megace, which I see is here:
http://cancergrace.org/topic/megace-avastin-and-blood-clots
I wonder if it might be helpful to do a signature - did you have one before on the old site? You need go to your Profile and fill in the "Forum signature" box. It is useful so that the doctors can see what is happening with your wife, and so that you don't have to repeat yourself! It may take a couple of goes but is worth the effort. The ever-helpful Mark has written a guide here:
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature
Very best.

Reply # - August 14, 2012, 06:32 PM

Dr West
Posts: 4735

I agree with pain being a potential, if not likely, contributor to her diminished appetite. But I'd also say that radiation directed to the lower left lung is the perfect location to cause diminished appetite. I hope that's the case, if only because it implies that once radiation ends, things may well improve.

Aside from the megace, with its association with risk of clotting, marinol or perhaps also dexamethasone (or another steroid) could be helpful with appetite, though none of these is a free ride in terms of potential side effects.

-Dr. West

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