P is still on Tarceva. No new meds, nothing extraodinary happened but since last week he has been complaining of muscle pains in his arms and legs. This morning he was totally fatigued and is experiencing dizziness and nausea. He had a sudden vomiting bout too. I wonder if we should be concerned? Could it possibly still be side effects from the Tarceva (this is the second month into Tarceva)
We would appreciate any suggestions.
Hi Delia, I'm so sorry P is having these issues. From D's experience I'd say all that could be tarceva but as you know no one can tell you not to worry about new symptoms that arise. It's best to make a call into the cancer center to let them know what's going on.
I hope all is well otherwise and he feels better soon.
I've definitely seen muscle cramps occurring in several patients on Tarceva, but I've rarely if ever seen muscle pains, dizziness, and nausea come on as a late side effect of this agent. While I suppose it's possible, it's hard for me to tie it all together, so I think it'd be very appropriate to run things by his oncologist to get more input. As I've mentioned in some other threads, sometimes we hold the drug in question to test whether the symptom improves with a day or two off of the agent. If so, it provides a line of evidence that the drug is a causal factor, especially if the symptom returns after you restart the treatment. This principle applies to chemo, a targeted agent like Tarceva, or even a medication like a blood pressure drug or pain medication that may have problematic side effects that you're not sure about attributing to one thing or another.
Dr. Howard (Jack) West
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Delia you asked if there is something stronger than Imodium. My oncologist prescribed me lomodil. I'm not sure if that's spelled correctly and maybe someone can correct me. However, it has been a life saver for me. Diarreah is one of my worst side effects and it works wonders for me.
It's Lomotil (as in "lower motility" of the GI system), and there's some more info about it here:
Along with Imodium (loperamide), it's one of our staples for treating diarrhea.
Our son passed his school leaving exams very well. We are the happiest parents.
P's onco appointment was yesterday, 4 January.
1. Blood work is good
2. Physical examination - says all sounds good.
We will get the chest xray result on Monday. Onco decided not to do the bone scan. He was in such a hurry, I don't exactly remember what he explained. I still wonder why.
On our arrival back home we realised that we were given the wrong Tarceva dosage....100mg instead of 100mg. We are livid!!
Otherwise P is doing really really well. He has never had any breathing problems since the fluid was drained in July 2012. He has had minimal muscle pains and some excruciating pains in both his legs and arms, which have since disappeared. The most (and lasting) discomforts he has had since diagnosis, and continies to have, are the Tarceva diarhea (sp) and rash. That's my observation a his wife, living close to him every day.
Blessings to all.
PS. Sherry, thanks for the lomotil tip, it works for us. We keep interchanging between immodium and lomotil now. It seems to bear fruit
Sorry....100 mg instead of 150mg. Just to add...we had never discussed lowering the dosage because P is tolerating the 150mg well, or perhaps I should say that we are managing the side effects very well.
Delialolly - - you may want to call the Onc.'s office on Monday and let them know about the dosage issue. It probably was a error on their part. They will correct it for you - - or else will give you an explanation as to why in case it was not an error.
Thank you Layla. That's the idea, yes. Just so annoyed that these little things keep slipping in. Its costly to travel plus our monthly onco appointment is such a huge thing to us and quite. Disappointing when its watered down like this. Anyway...I guess that's how we will learn!
Regarding the loss of your mom..I'm at a total loss of words for you. I lost my beloved dad two years ago ...massive heart attack. One day healthy as an ox...I went to him the day before, he was working in his garden. My mom was just discharged from hospital. Next morrning I got the phone call..he is gone! So painful. For me, time made the pain fade but the loss remains. All the best for you and your family during these trying times.
Yes, I think the dosing issue is easily fixable with a phone call. They can potentially just call in the prescription to the pharmacy where you'd get it, with the correct dose.
Congrats on your son's exam results.
Thank you, Dr West. I will call the onco in the morning and I hope we will be able to fix it quick. P is not happy to have taken the 100mg over the weekend and I do understand his anxiety, though I have seen from this site that the lowered dose would not have a severe impact during such a short time (three days). I suspect that, if we are lucky, we could have the correct dosage by Tuesday.
Meanwhile, its back to work for both of us tomorrow!
Blessed New Year to all.
A Happy and Lucky New Year to you both!
I'm sorry about your Dad, Delia - - it's just awful. . .and thank you for your kind words. And, hopefully your husbad's dosing issue will be resolved tomorrow.
All my best,
I know how anxious-making these mistakes can be ... but I think you can reassure your husband with confidence that a couple of days on 100mg is not going to be a problem of any kind. I completely understand - I remember taking a train to another town for a couple of nights' stay, and that sinking feeling when I realised I had forgotten the Tarceva. But here I am, alive to tell the tale ... All best.
So we called our oncologist this morning to get the results of P's chest xray and he is on leave, well deserved, I'm sure, but couldn't he have afforded us the courtesy of telling us so on Friday when we were there? Admin people say a dr will look at the xrays and call us. I wonder if he would be able to do something about the Tarceva dose problem.
I don't like this state of affairs.
Delia, I'd hope you could have both those issues addressed today. It could and seems very possible that this was a mistake.
Regarding Tarceva dosing issue: admin staff says there isn't much they can do. Says its not possible we got wrong dosage...says I must take a picture of the box and text...I do it..says why did we scratch out names...I say its a tape pasted over the box..I take a full pic of the box and text again but I do check my calendar to be sure its not 1 April. Long and short....we not getting anything from the onco anytime soon. P and I go to the pharmacy and buy a tablet cutter and halve some tabs to make it a 150mg....
Late afternoon, our onco responds to P's looooong text msg about the dosage issue: 'take one tablet every day'. ....that's his response.
Regarding the chest xray report: eventually get hold of locum at four in the afternoon...he says: 'There is nothing dramatic that happened here. Its not a crisis..can wait till dr ?returns on Monday' that's it! I tried asking specific questions, he is friendly, but reluctant to explain further. I asked admin people to fax me the radiologist report. Its three sentences long and confuses us more. I take all the xray and the one CT report in chronological order and realise that each reads as if its a report of a different person.
Are follow-up scans not supposed to make comparisons with baseline scans to show where treatment takes the patient to?
What a horrible day!
P is quiet....I guess we will discuss it tomorrow.
What a mess. . .I'm so sorry about all this. . .But, in the grand scheme of things, my non-medically-trained hunch is that taking the 100 mg dose for a week while the doc is on vacation probably will not affect things. I know that some people go off tarceva completely for 1-2 weeks as a result of side-effects, and do perfectly fine when they come back on. I know it is easier said than done, but try not to worry about it too much. But, also make sure that if this, in fact, is a mistake, that the Onc. hears about it and understands that the two of you were worried sick about it.
So frustrated for you. . .
I agree that it's not likely to be critical. As I've mentioned in several other threads, we routinely offer people a break from treatment for a week or two without ill effects, so receiving a slightly lower dose for a week isn't likely to have a significant negative impact at all.
As for the covering doc confusion, I'm not sure it's very helpful to try to extract information from someone who doesn't really know enough about the situation. I suspect you'll get a much higher yield discussion from his regular doctor.
I'm sorry to hear about the radiology report: yes, the real value of a current imaging study is the change or lack of change compared with the most recent prior one. That said, it's not rare to have it compared with much older ones, which is often not a very relevant or helpful exercise.
Thank you Dr West, Layla and Janine.
There are two sentences in P's xray report that we do not understand and are anxious about. I hope it falls into the 'direct question' category. We would simply like to know what the sentences mean:
There is an increase in the interstitial lung markers in the right lung. It is less prominent compared to the previous image result.
More interested to know what 'interstitial' means.
Thank you so much.
I searched 'interstitial' on this site and have an idea what it is. P's report makes mention of 'an increase in the interstitial lung markers' and I read about Interstitial Lung Disease (ILD) on Grace. Is it the same thing? I translated 'lung markers' directly to English. I read further here and on the Tarceva pamphlet, that ILD is one of the rare side effects of Tarceva. Our dilemma is that our onco will only be available on the 14th of January.
P does sound a bit out of breath to me and has an increased hoarseness.
I will suggest to him that we stop the Tarceva until we can speak to an oncologist.
Oh, this devil called Cancer...and his Foot Soldiers!!
After reading your most recent posts today, I wonder if your husband's doc decreased his tarceva dosage to 100 mg specifically because of this. . .
I wish I could agree Layla, but he never mentioned that. Our agreement the last time, was that P tolerates 150 and therefore we stick to it. Also, he has not seen the xray report yet...xray was taken after he gave us the Tarceva.
Thanks for the interest!
It would be good to have a comment from one of the doctors. But Delia, I personally would not be inclined to make a treatment decision based on a scan report that hadn't been explained to me. It's a bit of a leap from "interstitial lung markers" on a scan report to "interstitial lung disease" (especially as I think you mentioned you were translating from another language?). I notice the locum said there was "nothing dramatic" on the chest X-ray, which would reassure me if I was in your position. All best.
Fortunately P felt strongly not to stop the Tarceva, certain spring. So yes we will wait till Monday. I guess I'm over reacting.
I don't know that "over reacting" stories of mine would be of any help here; but I have a few. You are trying to do your very best in an absolutely impossible situation. Bless you.
I'm pretty sure it's not "markers", but "markings". It may say markers in the report, but the transcriptions often contain slight wording mistakes from what was said. Interstitial lung markings just means that the solid parts of the lung are a little thickened, which can happen from a lot of things and often isn't any serious or significant thing at all. It would certainly be a major leap from that statement to interstitial lung disease, which is really why it's far more important to go by what the people directly involved are saying rather than chasing some words on a piece of paper into a dark hole (especially since some of those words may be erroneous).
I'm afraid that this is really why I don't want to field questions about "what does this mean?" from every imaging and pathology report in the cancer world. There's a ton of misinformation out there, and often it stems largely from poor communication between the docs who SHOULD be discussing these issues and patients/caregivers. It's just not a feasible way for us to spend limited time, and too often the cause of anxiety is "borrowed trouble" from misinformation.
P called our oncologist on Monday. He said nothing to worry about the xray....'Interstitial markers' refer only to the fact that, as a previous smoker, there are these marks in his lung. Seems the discussion didn't go further than that....except that, according to P, onco said it looks good....whatever that is that 'looks' good. I just decided to stay out of it. Can't handle this vagueness and the fact that asking questions leaves me more confused. Anyway, there was some explanation also about the wrong Tarceva dosage....the office will post it. Turns out the very same admin lady that I spoke to about it last week, who made me send pictures of the box etc etc, had made some mistake....honestly, I still don't know what it was or is. However, I have a feeling I'll come back here in a few days and report that we have not received the package. Doesn't matter for now, as P's rash is bad again, and instead of the 150mg (we cut the tabs into half so that he takes 150), we are on 100mg again...two days now, skipped one day.
I'm saving my energy for our new beginnings: P has finally agreed that we look for another oncologist. It makes practical sense now that our son will be at university in another city, that we move there for his treatments, and see our son at the same time. I have my eye on an oncology centre, with a more integrated treatment approach (similar to what I see here on Grace) but P wants to ask for a referral from our present oncologist...the ever peace loving, loyal and good person that my husband is!
Well. . .I like what I'm reading here Delia. . .Thanks for the update.
Delia, I don't know if this is any help to you or not, but I started on 150 mg and had horrible side effects. My dr. had me take a 3 week break (it took that long for the puscles on my face to clear). Then he put me on 100 mg and 3 weeks into it, I had horrible hives. After treatment for that, he took me off again for 2 weeks. Then he dropped me down to 25 mg for a month, then up to 50. His rationale was to have me build up a tolerance for it. Long story short, my last scan was clear, so being off and on and dropping the dosage had no affect for me.I realize your husband is not me, but I hope my experience will help you.
Also, even at 50 mg, I have problems with the rash, cracking hands, and diarrhea. Strangely though, I will have a week or so where my face will be an absolute mess and the diarrhea is awful. Then I will go another week or 2 with relatively clear skin and no other issues. It seems to come and go frequently.
Thanks for concern Sherry. I feel the same about reducing the Tarceva dose but where we are, P is hell bent on taking the 150mg, is taking 100mg at the moment but doesn't see his way open to skip a few days or going to 50mg or so. His rash is not improving and we have a full pharmacy of products to help with the rash. He is so scared of the cancer growing and no amount of sharing experiences like yours can convince him otherwise. Its tough, I tell you. Given what you said, I'm going to call our onc now and explain the situation to him. Perhaps he can persuade P to skip a few days.
P's CT result of this Friday past shows stable disease.
I've learned a lot these past few months-amongst others, that biopsies aren't done here frequently. Seems its done once and then treatment decisions are based on performance to it, or not.
I'm okay with stable though of course shrinkage would have been better. P is continuing to do very well and we are managing the Tarceva rash as best we can. Onco suggested we lower Tarceva dosage as it sEems that P is very sensitive to it - we are giving it a thought.
Just two questions please:
1. The thickening of the pleural lining - is it permanent?
2. What's the worse case scenario of a thickened pleura?.
PS...Sheryy, the correct Tarceva dosage arrived a month later
Just wanted to let you know that to this community stable is cause for a celebration! So yaaaaaaaaaahoooooooooooooooo! We LOVE stable! Congratulations!
Yes, let's celebrate stable! I hope your husband stays there for a loooonngg time.
I looked for references to your questions about pleural thickening. It comes up mostly when speaking about mesothelioma.
If Dr. West or Weiss doesn't check in tonight I'll make sure one of our faculty responds to your questions tomorrow.
I hope you 2 will breathe a little easier for a couple of months with his new report.
The thickening of the pleural lining is likely directly caused by the cancer itself. Sometimes the cancer appears more as a thick rind around a lung than as a discrete spherical mass. Or it's a combination of nodules around the lung and inflammation in that area. Either way, the cancer can appear as pleural thickening.
As for a worst case scenario, it would probably be that the thickening combined with fluid around the lung makes it impossible for that lung to inflate properly, leaving it impaired or close to ineffective.
Thanks Debra and Janine. We were very relieved too. While we knew that P was doing well, the CT remains a very scary thing. And yes, stable is good enough!
Thank you, Dr West, for answering my questions. Just to let you know: There is a hillar node affected, that has shrunk with Alimta.Our onco says he 'suspects' its cancer. He also says the 'recticular' appearance on the right lung (thelung where the disease is) shows 'less' ...that presumably, it was cancerous (P has no visible solid tumour), and that the remaining spots might NOT be cancerous but rather the effect of his smoking history.
For now, we are happy that P has absolutely NO breathing problems.
Thanks you once again.
Good day all
We had another oncologist appointment on 15 March. Bone scan is clean. There is 'something' on his neck bone that our oncologist thinks it might be an old scar. Basically stable disease. P continues to feel good - with 'good' I mean that we manage the Tarceva side effects best we can. We agreed with onco to reduce dosage to 100mg as it does seem that P is very sensitive to the Tarceva.
On my question of whether we can add Alimta to the Tarceva (I asked that because I see it being done in other countries) onco said he is aware of such a regiment but for now to keep it on hold. The reason I asked was because of stable, which I understand is good, but which means the hilar node hasn't shown more shrinkage.
We have decided to stay with our oncologist. We weighed what we don't like with what we like about him and decided that what we liked weighs more.
We both have a hard time with depression. I take an anti-depressant but P doesn't...yet he manages! So many issues at personal, financial and work-related level that we have ...its emotionally draining! But we are hanging in there. It is now eight months since P's diagnosis and we are happy that he is doing good.
Hi Delia, So good to hear from you. Stable is excellent. There's a real danger of running our of options if you insist on trying to see shrinkage at each scan. Have you seen this post? It shows this idea in an algorithm. http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/
You could have been writing about D and me in your last paragraph, including who takes anti depressants. Cancer digs bigger holes in peoples lives than I had imagined when looking in from the other side. I'm sorry you both are in this crazy world but oddly relieved that you understand me.
Take it one day at a time,
It's great to hear your husband is stable! Glad that he is able to manage side effects reasonably well. This disease certainly takes a toll on much more than just a person's body and for more than just that person. Hang in there and onto every bit of good you get w/stable, minimal side effects, etc. Take care and keep us updated!
I agree that, as we often say in this context, stable is good. Stable is your friend.
And of course, I'm sure just we could say that everyone is a mix of things we like about them and things we'd rather change. I'm glad that you thought about things carefully and decided that staying with him was a thoughtful plan and not just the path of least resistance.
We love stable. . .Awesome!!!!!!
Thanks Janine, for understanding. I find it extremely difficult to talk to people...in fact, I don't think I'm able to articulate well what I need to say. Also, I'm trying to avoid a situation where people will flee when they see me coming because I'm a moaner..lol.
Thanks Lisa and Layla, for the well wishes.
Dr West, I appreciate that insight. I read on Grace sometime about 'over treatment' and I was cautiously hinting about that and glad that I have some form of confirmation. Thank you.
We had our onco appointment and ct scan today. CT scan report says that there is an increase in the interstitial markers. Our onco says he is not sure whether it could be the cancer or only an infection. He prescribed an antibiotic and I suppose we are on a wait and see approach. P has certainly developed occasional hoarseness and a dry cough. It doesn't seem to bother him, though. I was the one mentioning it to our onco.
These markers first came to light in the CT scan 8 January 2013. Its almost four months later and there is no improvement in the situation, rather an increase. We discussed with our onco whether perhaps this is an indication that Tarceva has stopped working. Onco suggests that perhaps we should go to a different treatment. He mentioned Avastin.
1. I do know that only a biopsy can tell whether these markings are cancer. However, given this continued increase in the interstitial markings, is there any possibility that these can be an infection and not cancer?
2. In this setting, should we begin to think about the possibility that Tarceva is no longer working (I guess assuming that the markings are cAnceR and not infection related)?
P is not taking the news well. It's the first 'bad' news that we had since diagnosis. This was the one visit we looked forward to because, apart from the hoarseness and cough, P continues to be energetic, eat well and has generally feeling well.
Delia, I'm so sorry about this scare. I don't think it's time to change drugs since you don't know if this is progression and he is feeling well. Try to antibiotics and if he starts to have other or more severe symptoms see the doctor sooner to discuss options. Avastin isn't usually used after first line. Alimta would be appropriate to return to since he responded to it previously without progressing. Too it's one of the 3 drugs shown to be best options moving forward. The other 2 being taxotere, which may have more side effects associated and tarceva. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-op...
It's devastating to get bad news. But this is something that could be alright. This is a nasty disease and everyone with it will say how absolutely difficult it is to move forward with any semblance of normalcy. It becomes a practice.
Thank you so much for the response Janine. P started on the antibiotics today and we have also agreed to see what happens. I received the CT scan news not too badly - I guess it is because I read and 'research' a lot, while P doesn't - but he is still taking it bad and basically I asked this question on his behalf.
To answer your questions, it's certainly possible that the increased interstitial markings represent inflammation or infection, but yes, we'd also be concerned about these increasing markings possibly representing worsening cancer. And a bronchoscopic biopsy would be the most definitive way to learn what these findings represent.
I would say that if there's good reason to be unsure what these changes represent, it makes sense to hold off on making treatment decisions, specifically holding off on presuming that the Tarceva (erlotinib) is now ineffective and therefore presuming that the treatment should now be changed from that to some chemo-based alternative.
Thank your dr West. We will discuss it with our oncologist. I think P would want to go that route as he is understandably very anxious to know exactly what this is.
We finally went for a second opinion and are so happy we did!
The oncologist is at a university hospital. He ordered the original biopsy specimen (for lack of the proper word!) For two reasons: Firstly to test for ALK, which, if positive he can apply to enroll P in a Crizotinib programme and if all goes well, treatment will be free. Crizotinib is not yet available in South Africa. Secondly, he wants to be very sure that P's is really nsclc and not mesothelioma. Obviously, P's situation lends itself to that question of nscls vs meso. In addition, the onco looked at the history - how alimta and cisplatin showed good response and mostly stable on Tarceva.
My question to Dr West: Is surgery to remove the thickening of the pleural lining an option in mesothelioma, with a pleural effusion?I have learned from Grace that it is NOT an option in nsclc.
Thank you...thank you thank you Grace, for the cancer education that I get here!
Forgot to mention that in his job, P visited asbestos areas and also that we live in a town that is surrounded by asbestos mines.
Delia, Good to know you and he went for a 2nd opinion.
It wouldn't be possible to do surgery on the plural thickening no matter of whether it's adeno or mesothelioma for the reasons given in the posts you've read.
I wanted to mention too that your husband responded to alimta and didn't progress on it, so it's reasonable to consider going back to alimta with an expectation of stability.
Did he move to a lowered dose of tarceva?