Is Iressa a legal option? It has very similar efficacy to tarceva.
It is legal, but actually finding the drug is a challenge. It's a well-known crisis with expensive cancer drugs in Romania lasting for many years. I don't know what exactly is the cause, but it's not surprising in a devastated country where you can buy anyone: doctors, politicians, prime-ministers. The cost of Tarceva is 100% supported by the insurance, but that does not guarantee that you can actually find the drug (and it might be a cause for the problems).
Anyway, I'll see how this goes. I'm quite confident my mother will manage to find this drug.
I just wanted to point out a couple of other trials where you can get Tarceva after first-line, in combination with other drugs. Depending on where your mother lives, they might be worth a look:http://www.clinicaltrials.gov./ct2/show/NCT01186861http://www.clinicaltrials.gov./ct2/show/NCT01456325
I'm glad that you're feeling confident and that your mother has such a well-informed advocate.
I have tried to contact those who run the study with metmab, but it looks that the study is not recruiting anywhere in the world. Given that the study started a year ago, it may hint a problem. It also may be an issue that there is no tissue left.
The other study with OSI-906 I read here it's on hold to evaluate the significant side-effects. I don't think I want to suggest my mother to enroll in such a risky study.
It may look strange that her doctor knows nothing about any study, even if *all* the studies who run in that city can only do so after obtaining his written permission. So the only possibility is for me to phone Genentech directly or write them by email.
I may be wrong but I think it's Roche who make and distribute Tarceva in Europe.
Correct: It's Genentech partnering with Astellas (the actual developers of Tarceva) to market Tarceva in the US, and Roche (which bought Genentech) outside of the US.
Dr. Howard (Jack) West
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
The study NCT01456325 will not operate in Romania and the closest locations is Ukraine. That is an impossible choice due to visa and complete language barrier.
However, before trying something else on this lines, I'd like to know if there are any preliminary results of metmab in EGFR-positive patients. I searched extensively here and the literature, but I found nothing.
If you have time, I'd be interested in known which might be the most promising study at this moment for my mom.
I'm not aware of any results yet presented with MetMab (onartuzumab) specifically in EGFR mutation-positive patients.
She had a CT scan, most likely a mixed response. Shrinkage in the tumors, but possible new small lesions (maybe) and involvement in the ilium bone. The CT-scans were not compared by an oncologist and they will never be. The oncologist does not interpret scans, he only prescribes treatment and manages side-effects. I don't know what is the norm, if oncologists actually interpret scans, I can only tell how it is in Romania.
The oncologist suggested to stop chemo after 3 cycles and go on Tarceva. Unfortunately that medicine seems to be impossible to find in Romania. About possible bone metastases he said he doesn't know (but again, he did not look at the scan).
I guess I can say that she was dying anyway ...
Primary tumor: 78 x 57 x 69 shrank to 52 x 28 x 43
One liver met: 47 x 41 shrank to 19 x 24.
The other liver met also showed shrinkage.
Such a sad remark.
Oncologists aren't the doctors who interpret scans, that would be a the job of a radiologist. Often oncologists will review the scans with the report, but it isn't their role to be the primary interpreter.
Studies suggests that 3 rounds of a first line doublet is where the most good is gained. In the US 4 to 6 rounds are given. I understand that as 4 just to be sure and 6 for the excesses of the US. 3 is probably just right for balancing toxicity and efficacy.
There are other options for 2nd line treatment if you can't get erlotinib (tarceva) or iressa. Have you read this?http://cancergrace.org/lung/2010/09/24/lung-cancer-faq-im-coming-to-the-...
Janine offered great suggestions. I really agree that Tarceva (erlotinib) isn't the only option, but perhaps she could get it on a trial or get a different oral EGFR inhibitor like Iressa (gefitinib) or afatinib (not yet commercially available) in a clinical trial if not commercial drug...
And yes, oncologists aren't the primary docs reviewing and interpreting scans, though we do often, even typically, review them directly. Often it helps to have the clinical picture of what's going on when trying to interpret the findings.
You may want to review my recent videos in the lung cancer section about "mixed responses" to treatment for lung cancer.
There are two trials: one will not run in Romania, the other one I can't contact. There was a trial with Tarceva first line at the same clinic my mother is treated, but the doctor chose to ignore it (or maybe he did not know about, although he approved it).
Well, the whole consult with the oncologist lasted 5 minutes on the hallways. He looked at the results and said "good". My mother then asked "is it progression to bones". Then he put on his glasses to read the report and after 10 seconds he replied "I don't know, we'll see". And that's all. I don't have anyone to give a second opinion. If we can find Tarceva, maybe we hope a bit. Otherwise the cancer will be let loose to do its job. Iressa is not available.
At this point I regret that I did not convince my mom not to have CT-scan. It was simply useless. I don't even know who interpreted it and ...
My mother was a nurse (until she had this cancer). One day at work a patient had a cardiac arrest. She and another nurse rushed to resuscitate the guy, while another patient went after the doctor on duty that day. The doctor came, looked and said "he's not my patient" (read "so he didn't bribe me") and then she left. The patient did not die that day, but this simply doesn't matter: for the doctor, it would have been the same. I'm not saying that all doctors are like that, but many are.
Apparently she will have Tarceva. It wasn't difficult: a drugstore employee phoned the local branch of Roche and required the drug to be shipped to that store. Finding such an employee was very hard. My father went to 7 - 8 different drugstores in vain, almost exhausting all the options.
Great news. . .
I'm so very happy for your dad's tenacity and hope your mom does very well on the drug. Please keep us posted.
Very good to hear. Good luck with it.
Tarceva will arrive in two days.
The mutations are in exon 21, L858R and L861Q. I saw that the last one is extremely rare and I did not find many things about it, except that it may lead to a worse response to TKI inhibitors.
The last CT-scan showed significant shrinkage everywhere (lung, liver, mediastinum), but apparently osteocondensation lesions on the illium bone, the largest having 12 mm. If it's indeed bone mets, it looks that her cancer is extremely aggressive; morphine will be a certainty in the future ... They have radiation and zometa, and MRI for detection, but no decision has been taken.
OK, so I got the French term: judging from the radiologist report, we speak of osteoblastic bone lesions. In two months the biggest one grew under chemotherapy from invisible to 12 mm. All other tumors shrank a lot. The doctor decided without reading the report that no further investigation is needed.
Honestly, I thought for a moment today that it's good to have an aggressive cancer when you have bone metastases. At least you won't suffer too long...
There's reason to be hopeful that she'll do well with Tarceva. I hope you can share some good news in the future.
I'd have one question: assuming that the CT-scan shows some bone involvement, would following up with a bone scintigraphy be a reasonable thing? Now, we also assume that there will be someone to read that scintigraphy too (who knows).
I have read about Xgeva. In Romania, this might be more difficult to find and the insurance doesn't pay for it (they go with zometa). I saw that one can buy with prescription, over the counter, prolia, which is apparently the same thing but with half the active substance compared to Xgeva. Is this true? Would it work to buy 2 doses of prolia if you don't find Xgeva?
Unfortunately I'd have another question: in this setting (EGFR positive) and assuming bone mets, would it be the norm to prescribe zometa/xgeva along with Tarceva, or Tarceva alone might be enough?
There is really nobody to read that CT-scan and say clearly whether it's bone mets or no.
I wonder if one can detect bone mets using a blood test (or get a hint of it). I'm sorry for the last questions, I really did not find more time to read about these days.
Here is a forum discussion of your question about zometa and xgeva, http://cancergrace.org/forums/index.php?topic=9140.0
There are no blood tests that detect or hint at bone mets...yet. There is a lot written on Grace about detecting bone mets.
Dr. West wrote this, http://cancergrace.org/lung/2007/02/17/bone-metastases-in-lung-cancer-an...
Dr. Harmon writes about detection, "Bone metastases are classified as osteoblastic (increased growth), osteolytic (increased bone breakdown), or mixed. All types of bone are often diagnosed with simple plain X-rays; CT scans can show more detail, not surprisingly. Bone scans are also used as well and show metastases earlier than plain X-rays in general; however, bone scans don’t always pick up bone lesions that are purely “lytic” in nature, i.e., purely causing bone breakdown. MRI scans have not been considered the initial modality for diagnosis, but they can be used when CT and x-rays are not revealing."
Hope this helps,
Most oncologists don't consider the role of these "bone-directed therapies" to be as critical as the main anti-cancer therapy, but primarily more supportive. Even in health care systems where Zometa (zoledronic acid) and XGEVA (denosumab) are readily available, many doctors don't administer them that readily, because they are generally considered to be a secondary factor. And I think relatively few would give treatment in the absence of clear evidence of bone metastases.
Repeat bone scans can be done, but that's not a clear standard. It's not possible to reliably use follow-up scans to interpret whether existing bone lesions are improving or healing...the visual cues just aren't that reliable. The main thing you can do with repeat imaging is conclude that someone has progressing cancer if new bone lesions appear, but many oncologists will be more inclined to do a repeat bone scan more for new symptoms than for regular surveillance.
And yes, you could potentially double up on Prolia to get the same treatment as XGEVA, though I've not known anyone decide to pursue that route.
I'm sorry for being unclear, I'm scared when writing things here and I don't think too well.
Zometa is readily available, xgeva might be (payed by my mother though). If we believe the radiologist's report, it shows clear and rapid bone progression (in two months, under chemo, from invisible to 12 mm). The oncologist though dismissed these findings saying that "if the tumor shrank everywhere *a lot*, it's unrealistic that it progressed in bones a lot". The oncologist though doesn't read CT-scans, will never do, and will never phone the guy who read the CT-scan (doctors in Romania usually do not collaborate). The guy who read the scan is no expert, of course, and he may be even a doctor-in-training. And here we are in the middle, me and my mom, wondering what is the worst choice and what is the less worse.
She has poor teeth (periodontitis), she is overweight, and a bone fracture would mean the end of her independent life (not to mention pain due to mets). My take is that she would be inclined to take zometa as a preventive measure, as we'll never find out if she has bone mets or not at this point.
Neither of the drugs are normally given if the patient has teeth problems such as periodontitis. The small minority people who get necrosis of the jew when taking zometa or xgeva usually have problems already with their teeth. In other words the gamble tends to loss its worth.
Janine brings up an excellent point. These drugs are contraindicated in someone who isn't cleared by a dentist as being low risk for osteonecrosis of the jaw (ONJ), a dreaded but uncommon to rare complication that is far more common in people with poor dentition.
I am truly sorry for the difficulties of managing your mother's care in Romania, but GRACE really can't become the place where we run interference and second guess all of her care done locally. We can provide general information but can't address intractable problems with the delivery of health care in another country.
Hey guys, please don't be upset! It's also hard to me. Everything I know about this dreadful disease comes from here, NCI and maybe some journal papers to which I arrive following links from those two sites. It's hard when the doctors who actually treat the patient offer no explanations - I guess it would be challenging to do that in 5 minutes as it took for an appointment. If I hadn't known English, I would have had no reliable source of information.
So, this is what I understood:
1. My mother must take Tarceva.
2. It may be risky yo take Xgeva or Zometa, even if there are bone mets due to her periodontitis.
3. No matter if she has bone mets or not, the standard treatment at this stage is the same in the US: namely TKI inhibitors. Because of that, another bone investigation like MRI would add nothing to the treatment.
4. In US you would do another imaging in 2 months and then evaluate the response to the treatment.
My mother started Tareceva 4 days ago and she has some rash on her face and neck. I understood from here that she should use a lotion with hydrocortisone and maybe another topical antibiotic (and I told that to her). For now she uses just a normal hydrating face-cream. I have also told her that maintaining a good hydration of the body is extremely important.
I'd also want to point out that my mother was a nurse, so her knowledge is way beyond my level.
I think you've provided a good summary. It's also important for it to be taken on an empty stomach.
I typically give patients who I start on Tarceva a prescription for a topical antibiotic, topical hydrocortisone cream, and a prescription for Imodium (loperamide) as a potential treatment for diarrhea, which is the second most common side effect after rash.
She's fighting the side effects of Tarceva and chemotherapy.
The rash is between moderate and severe. She has rash/pustules on face, neck, chest and back and few of those on the face got infected. They are not painful though. From what I've read you only think about interrupting/reducing the dose when the rash is severe and painful.
She does not have diarrhea, no need for any medicine for that.
Her sensitivity in her hands and feet is very low, she said she is afraid that, if she hurts her hands, she won't feel it immediately. No other pain (if there are bone mets, they are not painful for now).
No hair, no eyebrows, no sensitivity, horrible rash on the face, no wonder she feels mutilated and she avoids getting out.
Other than that, nothing. The next follow up with the doctors is after 4 - 5 months (there was no follow up to asses if she tolerates Tarceva and it won't be one). She might try to do a CT scan after 2 months, as I saw it's the norm in the civilized countries, but let's see if I can find someone to look at the scan.
The rash is normal. It should get better as the body adjusts. It's a good sign:http://cancergrace.org/lung/2012/11/25/topical-rash-and-egfr-outcome/
That's terribly unfortunate. I typically see patients two and then four weeks after the start of Tarceva, largely to check on how tolerable it is. In many patients, the side effects are a real problem at the starting dose of 150 mg daily, but they can do much better for a long time if we drop the dose to 100 mg daily. And there are also things like antibiotic ointments, steroid creams, or even oral steroids and/or antibiotics to help people through this. But that really needs someone intervening. Tarceva's hard enough even when you have someone helping to shepherd people through it. It's not something that is really meant to be prescribed and then not overseen by anyone.
She is now during the third week of Tarceva. She will go tomorrow to take another prescription for Tarceva, and there is a slight chance to meet her doctor. Nevertheless, it may be the case that the doctors there don't have too much experience managing Tarceva, so...
Right now she is taking topical fluocinolone and from time to time a natural cosmetic cream to which she added an antibiotic. I have read to her the article here made by Dr. West and Dr. Lacouture about skin problems and she rejected for now taking any oral antibiotic.
I have read the detailed Tarceva prospect, and it mentions bilirubine and kidney functions as possible concerns. I know that in December her blood work was normal, except for a slight glucose increase (110?), elevated LDH and GGT.
1. In US, for a patient without clinical signs other than rash, is it the norm to do blood work in this situation (2 weeks and a half into Tarceva)? If so, what are the important things you'd look up? She had recurrent urinary tract infections in the past (and she was periodically taking antibiotics before finding the cancer).
2. I guess that, if the rash is not painful and not severely infected, it's not justified to think about dose reduction?
The reference for rash I used this one: http://cms.managecrc.com/ArticleImages/Article-157/eruptions_cutaneous-s...
My mom is somewhere between B and C. Certainly much more than B, but not really C.
I guess it would be helpful if we can find a manual/textbook/research article about managing Tarceva for health professionals. I just have too many questions.
Thanks a lot, GRACE!
"Periodic" monitoring of liver function tests and kidney function are recommended in the prescribing information, but that is probably deliberately vague. I routinely recommend repeating labs and a clinic visit two and four weeks after starting Tarceva, then monthly for a while, eventually sometimes going 3-6 months between visits in patients who are doing very well for a very long time and are tolerating it well.
I don't have another resource to recommend besides what's here on the website in the section on EGFR rash, as well as what you've provided a link for. I can't recommend self-management. Tarceva can have serious and even potentially fatal side effects, so if she doesn't have anyone qualified overseeing her care on Tarceva, she should probably find her way to someone, somewhere, who can serve that function, or not be on it. GRACE is really supposed to be a supplement for qualified medical care being delivered locally, but not a self-care manual for cancer.
Thanks for everything!
What can I say? I have spent countless of hours on the internet trying to find ways to help my mom. In Romania this is pretty much the best health care available. Her doctor is actually full professor (the hospital is also in a big university city, and the medical school there is considered one of the best in the country, if not the best).
I have thought often that, had it been the case for surgery, I would have taken a month off or whatever and I would have gone with my mother abroad. But it's not. We are speaking (hopefully!) about a longer treatment, when the patient must be checked periodically. And I really don't know what to do! I am *HORRIFIED* that it will come a moment when treatment decisions will be made simply using a coin flip, since no oncologist there can interpret scans (or doesn't want to).
Not to say that my mother is afraid of going abroad, in a hospital where she doesn't know the language, she is reluctant to involve me (although this is a must) and we can't afford a long-term treatment abroad (now Tarceva is payed by the state, but, had she been prescribed Tarceva in another country, she would have payed it out of the pocket).
I apologize for this long post with no clear medical question.
I truly understand that you're caught in a situation for which there is no good answer. Of course that's frustrating. It's just that your earnest effort and what you can learn from GRACE and other sources won't replace the medical care that is required where she actually is.
costica, what you don't seem to realise is how much you have already helped your mother, even within a healthcare system that you despair of. When you first came to GRACE in October, there was no question of EGFR testing and therefore no prospect of Tarceva. Yet you got both for her. You sound despondent about the rash but it is a good sign, and she has every chance of doing very well on Tarceva. Of course no one without personal experience can imagine what things are like in Romania, but I wonder if it is possible to establish good links with a doctor in the hospital and work out between you what needs to be done for monitoring purposes. It is to their advantage as well - this is their chance to learn about a new drug and a new way of treating lung cancer.
Unfortunately most doctors in Romania know absolutely everything and there is nothing for them to learn. The doctor treating my mother is full professor (yes, he is so good that he teaches to students; no, he doesn't have peer-reviewed publications in real journals).
She is managing the rash (thanks to the advices found here, of course). She had a blood test and everything looked normal, except GGT and sugar (113). GGT showed a decrease from the last blood test. The only thing that was elevated on the last test was LDH, which is normal now. As it happens, her doctor did not look at the results.
I am not so worried about rash; I understood that, in a fight with such a deadly disease, my mother is simply alone. Despite my efforts (and I didn't say here many things) no real doctor will try to interpret her scans and all the future decisions will be random. As I said, she is dying anyway...
In a normal country she should have done a CT, she's two months on Tarceva now. In Romania the next CT is recommended in late May. Of course, it's not to be read and carefully studied by the oncologists, it's simply required for the file to approve more Tarceva or not. I failed to find an oncologist who can interpret CT scans. I will blame myself for this for years...
My mother is quite good. She still has some rash (but no longer severe), she had some problems with the nails (thanks to this site she knew what to do) and she accidentally cut a piece of her finger while cutting her nails. Lost sensitivity ... it may be that she had too much taxol. Sometimes she has mild diarrhea like 3-4 hours after Tarceva, but she doesn't want to take any medicine for it, she says this is not really a problem.
So, my questions:
1. Would it be that dangerous to wait with the CT until May? To be honest, I am scared.
2. If Tarceva is not working (she was not tested in exon 20 and she has the rare L861Q in addition to the more useful L858R), what would be a next good choice (if any)? Or I guess we should know first how exactly is Tarceva failing (multifocal progression or progression in just one area)?
3. What about Nexavar? Assuming Tarceva fails, would Nexavar be preferred over other combinations? Given that it is available for other cancers, we may try to obtain it, if it's not too expensive (think avastin).
I guess questions 2&3 try to clarify what I have read over here.
In Romania there is a trend of avoiding CT because of concerns about radiations. No doctor performs CT-guided biopsy for fear of radiations (or they use this as an excuse). It's also the norm to do even 6 cycles of chemotherapy with no CT-scans in between.
Hi costica, So glad you've updated us. It sounds like your mom is feeling alright which is a very good sign that tarceva is working. If there are no options to get CT earlier you can feel good that your mom is feeling well and not experiencing too many side effects.
We are in the U.S. and my husband only gets scans every 3 months which is not at all the norm. He's been lucky with treatments working well and little to no progression at scans so I've not worried too much. My attitude could change if his cancer changes pace I'm sure. But what I'm saying is if your mom is feeling well then I'd not worry about how often scans are. If she starts having symptoms that cause concern about progression that may be the time to fight that battle with the hospital.
You're right about next steps depending on what progression looks like. Have you seen the new installments from the targeted therapies conference last month? Quite impressive,http://cancergrace.org/general/2013/02/20/iaslc-vids/
You may have seen this blog and the fabulous discussion that follows, http://cancergrace.org/lung/2012/10/17/mission-trial-neg-egfr-mutn-pos/
It's just so expensive I'd have to pretend it didn't exist.
This is a discussion on 2nd line treatment chemo options. http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-op...
Here's to your mom staying on tarceva for a long long time,
I suspect the argument about not doing CT scans to avoid radiation is just an excuse. If the argument is that the concern about radiation is significant, then it's a positively idiotic concern -- the risk of progressing with metastatic cancer on a treatment that isn't helping is about 5000 times as great a threat as the theoretical risk posed by getting a CT scan.
I can't say how much of a risk there is with continuing on Tarceva without a scan. Since there aren't really great additional options that have an established benefit in patients who have been on a few prior treatments for advanced lung cancer, it's not incredibly critical to detect progression earlier rather than later, especially if a person is doing well overall.
Nexavar (sorafenib) is not a standard treatment for lung cancer in any way right now. It would not commonly be recommended here or anywhere. Instead, the last link Janine offered summarizes the main treatments that would be leading considerations for someone with a progressing NSCLC and who has already received prior chemotherapy.
She had severe problems with the nails (due to Tarceva), and they look like an ingrown nail. It was no accident with cutting the finger. She used only vinegar to treat these.
People are so concerned about the danger of radiation exposure. She has to do a CT scan at the end of May and none in between for fear of radiation. Yes, doctors warn continuously about radiation risks. For example, when performing a scintigraphy, the patient is isolated after being given the contrasting substance, and the family is told not to stay close to him for a few days (this was an example, she has no intention of undergoing a scintigraphy). Well, the equipment also is most likely ancient or second-hand.
She said she might do an ultrasound imaging, but I'm not sure if one can decide if the cancer is progressing or not based on ultrasound images. And I'm pretty sure there is no other way of detecting progression other than CT.
Hello costica, I'm so sorry your mom is in this position. I know the US is having big issues with getting it's medical needs met but it's better than most (too much though).
You probably know this but your mom should keep your skin shaded and moisturized as much as possible. This may sound gross to some but not washing can help the bodies natural moisture to take care of the skin. Of course there is a balance to be made with sanitation. Here is a link to Dr. Lacouture discussion on skin care on tarceva. It has good suggestions. http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-o...
Here is a quote from Dr. West on ultrasound for assessing, "... I agree that doing an ultrasound of a single area of metastatic spread is not the typical approach. It might arguably be a way to go if the only known disease were in the liver, but even then, doing an ultrasound won’t provide information about whether any new lesions have emerged elsewhere. And while the doctor has said that this isn’t a cancer that spreads quickly, it did apparently spread from the lung to the liver, so it has the capability of spreading to other distant sites." from http://cancergrace.org/topic/an-ultrasound-check-only
Yes, I used Dr. Lacouture's discussion. The problem is that she thought that it was an ingrown nail, and we knew that these problems appear about 3-4 months into therapy; in her case, they appeared like one month and a half. Can't have ingrown nails at 4 fingers simultaneously! She also has rash on the legs (just as she had on her face) and her skin is cracking very easily. She uses lotions, but you can't apply lotion all over the body.
She should find a skin-friendly sunscreen, right? Does anyone have any recommendation? How much the SPF should be? (Romania gets quite a bit of sun & warmth, in July and August there are many days when the temperature in the shade goes above 35C).
I don't know what to say about the CT. Even if she has a CT now, there is nobody to look at it. We still don't know, after 3 months, if her cancer progressed to bones while on chemo. A radiologist-in-training said that apparently yes. That is the second reason, perhaps, if she knew that a real oncologist would interpret those scans, she would disregard the (doctor - induced) fear of radiations. Her cancer produced huge CEA (too big to be measured at the time of diagnosis) and CRP, so it may be more aggressive.
I want to make sure you have this link on tarceva rash including nail problems and links to other post such as the one recce101/NED pasted. http://cancergrace.org/forums/index.php/topic,8476.0.html
The easiest way is to wear a hat and cover with light clothing especially if there is already a rash.
From the transcript of the podcast i linked to above, "For those of you that develop sensitivity in your skin, which I’ve noticed that many people on
Tarceva and Erbitux, they develop allergies to things that they were never allergic to, especially
around the neck or the face. Make sure you use a cream that has no fragrances or perfumes,
and the cream that has no fragrances or perfumes that is well known to dermatologists are these
products known as Vanicream, which are made specifically for people with very sensitive skin.
You can see here how you can find them at a web site, or also on the internet at Amazon.com,
but many pharmacies will carry Vanicream and also carry Vanicream-containing soaps,
shampoos, as well as sunscreen. So, for those of you with sensitive skin, Vanicream would be a
as a matter of fact it may be easier (it is for me) to view the slide show and or read the transcript so to learn better the tricks that have been found to work for tarceva skin problems. The subject is toward the end of the discussion.
Good luck in finding and trying some of these products. I hope for the best for your mom.
We don't know how to deal with the nail problems. Her whole hands are simply an open wound, no matter what she does (easy job, like cutting a piece of a carrot), her skin near the nail breaks; it's very very painful.
She tried vinegar, epsom salt, silver nitrate cauterization, various topical creams and antibiotics, and she usually wears surgical gloves when doing something. In vain. She did not try though to take an oral antibiotic.
Her face has also red, dry spots. She feels that these will be permanent and she feels mutilated (add to these the continuous pain in the nails, and the very short hair - almost non-existent). For the first time today I heard her crying and saying that she will die soon.
I guess a dose reduction would be out of question until we find out if Tarceva is working or not.
Of course, her doctor has no advice. She spoke once with a radiologist (who is a relative of her), worried that in US a follow-up scan would be after 6 weeks, while in Romania it is after 4 months (and not because of a lack of equipment). The answer of the doctor was very simple: "Then, why don't you go in US to receive treatment there?" (of course, he knew very well that this is impossible).
Oh costica, I very sorry your mom is having such a difficult time with you hands. I understand from reading on here how devastating it can be. From a personal non medical standpoint it seems an individual judgement call could be made on a dose reduction; she's got the pills at home. Your mom is in a unique situation. If the treatment is unbearable she has the control to take all or part or none of her dose.
It was a very comforting thing when I found the faculty on Grace (which adds up to be the most common practices) to practice a balanced approach of treatment and quality of life; infinitely more so than when my dad went through this in 1970.
Lastly, I'm very sorry she was spoken to in that way. How crushing that must have been. Hopefully she doesn't have to she that radiologist for treatment. Perhaps at a family reunion you could slip the good doctor a laxative. :twisted:
I'm so sorry that she's having such a miserable time, though this is a situation in which I would have definitely held the Tarceva as soon as I heard of anything even close to this level of side effects, which is wildly excessive and completely unacceptable. If someone is experiencing serious side effects that make it truly uncomfortable to continue it, I think it's a singularly awful idea to continue it, and we routinely cut the dose. Regardless of whether another scan has been done or not, if the side effects are excessive, you hold it and start at a lower dose, which is generally available. If not, even doing it every 2-3 days or cutting the pills in half, though not a studied option, would likely be a better solution than continuing it at a completely unacceptable dose.
I hope things get better for her.
We got the CT results, and her oncologist was very happy with them.
In short, the radiologist's report suggests good response for the lung tumor, and OK response in the liver and lymph nodes. My mother asked her doctor if it is possible to add something to Tarceva, the oncologist said that he would think about and he would also ask one of his colleagues in another city. I guess that they didn't have many EGFR+ patients.
Her blood tests look OK. Increased values:
GGT: 79 (normal < 36)
Glucosis: 145 (normal 70 -- 105)
CRP: 0.59 (normal < 0.5)
CEA: 2.80 (normal non-smoker < 2.5 ng/ml)
ESR: 23 per hour (normal 2 - 10 mm/hour)
NSE: 14.33 (normal 0 - 17 ng/ml)
LDH: 200 (normal 125 - 220 U/L)
She is in good shape, she would even resume working if she hadn't had the issues with her fingernails. The big question she and her doctor have: if the patient feels OK and is willing to take more treatment, an oncologist would add something to Tarceva or would continue with Tarceva alone?
Here are some excerpts from the report, if you could help us understand it better:
"Left inferior lobe: hyperdense area with intense intake of contrast which covers the
origin of inferior lobar bronchus, without to modify its diameter, with a thickness of
approx 5mm, in contact with the descending aorta on 13 mm, without the interface with
mediastinal pleura (dimensions much reduced compared to the previous CT)".
Previous CT: 52 x 28 x 43 mm
Of the mediastinal lymph nodes, the largest is the the one in the aortopulmonary window (10 X 16.3 mm).
The liver shows 3 lesions in segment 6, the largest being 26 x 40.8 X 27.8. In segment 7, there is a lesion with max diameter 9 mm.
On the previous CT she had lesions in segments 4a, 5, 6, 7. From what we can see, some lesions disappeared, and the others reduced their sizes.
Abdominal lymph nodes: the largest is the paraaortic one (10 mm).
On the bilateral iliac bone and right scapula, one can see some osteoblastic lesions, with stationary aspect. My mother thinks that these lesions appeared in the interval between the liver biopsy and the beginning of chemo (it took about 2 weeks).
I'm sorry that we really aren't able to provide interpretations of a battery of labs and report results. That's not within the realm of what we're permitted to do, and it's also a good deal of work that isn't something that GRACE is designed to do -- as is stated in our forum guidelines. We can provide general information about more general issues, but individual results need to be discussed with doctors directly involved.