Lung Cancer Which Has Spread And Treatment

[cerbera]

hello,

My wonderful mother in law was recently diagnosed with lung cancer which has spread to her brain. She has a lot of tumours. We are all devastated as she is very young and has been the rock in our family for many years. she also really never did anything to contribute to her disease.

Ive got a few questions

weve been recommended to start Iressa which is very expensive. we were offered no help whatsover from the cmpany and this is apparently the first time the doctor has seen this.

Has anyoun got any experience of the drug. Positive negative. obtainning it. is efficacy. How we could get it.

pros and cons over chemo?

Has anyone any experince on purchasing from an online pharmacy.

Alternative treatments. diet etc

ANYTHING we are desperate,

Thankyou sincerely

[mallyrd]

I am sorry to hear of your Mother-in-Laws predicament.

As for the medicine you have referred to you should be able to do a search and find out about the pro's and con's as well as the cost.

[Sheryl]

I am sorry to hear about your situation. Some important questions;

- where does your mother-in-law live? (makes a difference in terms of possible eligibility for drug company assistance)

- was she tested for the EGFR mutation? (which is what the drug specifically targets)

- what type of cancer is it? (e.g. adenocarcinoma?)

- is she Asian?

- is she/was she a smoker/

These last 4 questions will all effect how likely she is to benefit from the drug. In particular should be sure, given the expense involved, that she has the relevant mutation (EGFR). From what I've read, the majority (>70%) or people with the mutation respond to the drug but there is little response in the absence of the mutation.

You (and she) need to understand though that by "respond" what is meant is a longer survival, not a cure. It is unfortunately a terminal prognosis, and as painful as that fact is, she and her family need to think and plan/prioritize accordingly. Patients in her situation, assuming they have the mutation, on average survive about a year and a half with treatment. Tretament with Iressa does a bit better than with standrd chemo but the difference is not that much, about a month (see http://cancergrace.org/lung/2008/09/16/ipass-results/). Not all of that time is what is called "progression-free" (i.e. the cancer does not grow any worse than it currently is), but much of it is. Of course, these are all averages and it is possible she'll do better than average, but just to give you an idea and to help you put the expense involved into perspective.

In terms of adverse effects of the drug:

"The most frequent drug-related adverse events associated with Iressa were diarrhea in 48% of patients, sometimes with dehydration, rash in 43%, acne in 25%, dry skin in 13%, nausea in 13%, and vomiting in 12%.

Although these events were generally mild to moderate, leading to discontinuation in 2% of patients, about 1% to 2% developed ILD (interstitial lung disease) with interstitial pneumonia, pneumonitis, and alveolitis. Approximately one third of patients with ILD died (i.e. one third of 1 - 2%, so less than 1%) , and most required hospitalization for acute respiratory distress (again, refers just to the 1-2% who develop that complication)."

http://www.medscape.com/viewarticle/456223

Again, very sorry to tell you all this, but you need to know so that you can make informed decisions. In addition to whatever she decides to do regarding treatment there are other things she and all of you need to think about and hopefully discuss, such as whether, when the time comes, she prefers to stay home as opposed to dying in a hospital (a hospice would be another option) and how she feels about advanced life support (respirators etc). The point will likely come where her family have to make those decisions and it will be very helpful to be able to be know you are doing as she wanted. Right now, when everyone is still reeling from the bad news, it may not be easy to talk about this, but do discuss it at some point while she is still strong and clear of mind.

[cerbera]

Sheryl, thankyou so much for your time and compassion and candour.

If you wouldnt mind id like to send you a pm with the answers to specific questions.

I would just say that my mother in law is 56, never smoked or drank any alcohol . However she comes from Korat. She used to make noodles for a living and I saw her making these over an open fire under a shelter for want of a better word. Im sure this has contributed to her present condition. The family at her home in Korat also still use open fires most of the time for cooking and boiling water. The smoke stays under the house where the people are most of the day. Its taking its toll.

Of course the women and the children bear the brunt of this. Its just doubly sad.

I am sorry to hear about your situation. Some important questions;

- where does your mother-in-law live? (makes a difference in terms of possible eligibility for drug company assistance)

- was she tested for the EGFR mutation? (which is what the drug specifically targets)

- what type of cancer is it? (e.g. adenocarcinoma?)

- is she Asian?

- is she/was she a smoker/

These last 4 questions will all effect how likely she is to benefit from the drug. In particular should be sure, given the expense involved, that she has the relevant mutation (EGFR). From what I've read, the majority (>70%) or people with the mutation respond to the drug but there is little response in the absence of the mutation.

You (and she) need to understand though that by "respond" what is meant is a longer survival, not a cure. It is unfortunately a terminal prognosis, and as painful as that fact is, she and her family need to think and plan/prioritize accordingly. Patients in her situation, assuming they have the mutation, on average survive about a year and a half with treatment. Tretament with Iressa does a bit better than with standrd chemo but the difference is not that much, about a month (see http://cancergrace.o.../ipass-results/). Not all of that time is what is called "progression-free" (i.e. the cancer does not grow any worse than it currently is), but much of it is. Of course, these are all averages and it is possible she'll do better than average, but just to give you an idea and to help you put the expense involved into perspective.

In terms of adverse effects of the drug:

"The most frequent drug-related adverse events associated with Iressa were diarrhea in 48% of patients, sometimes with dehydration, rash in 43%, acne in 25%, dry skin in 13%, nausea in 13%, and vomiting in 12%.

Although these events were generally mild to moderate, leading to discontinuation in 2% of patients, about 1% to 2% developed ILD (interstitial lung disease) with interstitial pneumonia, pneumonitis, and alveolitis. Approximately one third of patients with ILD died (i.e. one third of 1 - 2%, so less than 1%) , and most required hospitalization for acute respiratory distress (again, refers just to the 1-2% who develop that complication)."

http://www.medscape....warticle/456223

Again, very sorry to tell you all this, but you need to know so that you can make informed decisions. In addition to whatever she decides to do regarding treatment there are other things she and all of you need to think about and hopefully discuss, such as whether, when the time comes, she prefers to stay home as opposed to dying in a hospital (a hospice would be another option) and how she feels about advanced life support (respirators etc). The point will likely come where her family have to make those decisions and it will be very helpful to be able to be know you are doing as she wanted. Right now, when everyone is still reeling from the bad news, it may not be easy to talk about this, but do discuss it at some point while she is still strong and clear of mind.

[Sheryl]

Of course, feel free to send me a PM.

As she is Thai (and, I assume, living in Thailand) there is probably no recourse in terms of financial help. AFAIK none of the pharmaceutical companies have "patient assistance" programs (as they do in the US at least) in this part of the world. Altho no harm in contacting Astra Zeneca (the manufacturer) to ask.

The government health system will treat her but a drug like Iressa, which is an expensive patented import, the patient probably has to pay for. However it is quite possible the government health plan can fund all of the costs of standard chemotherapy, or if not that the additional costs would be small. As you may have seen in the referenced article, patients with the EGFR mutation also do better than those without in terms of their response to standard chemo.

Or, depending on family resources, you could try to raise the money to pay for the Iressa, but if so, understand that at most it will be a few months more survival time, not a cure, and that there is no guarantee even of that. Most patients (if they have the mutation) live a little longer with Iressa than with standard chemo, but for others the outcome is no different.

As she has brain metastasis, radiation may also be advised to shrink the tumors, this likewise can extend life for a while and may help with symptoms such as headache.

There was a clinical trial in Thailand on Iressa but unfortunately it has completed so this is not an option. I don't know the results, not yet published, but given that the doctors recommended it for your mother-in-law i assume it showed the same benefits seen in other Asian populations.

One thing you could do -- nothing lost by trying -- is to consult either of the doctors who were lead investigators in that trial and (1) see if by any chance they know of any means by which she could get Iressa at a subsidized or discounted price and (2) ask them to provide her and the family with some clear idea, in quantifiable terms, of what her odds are with this versus standard chemo given her specific age and condition and what they found in the recent trial. The principal investigators were:

Virote Sriuranpong, MD., PhD. Chulalongkorn Hospital, Bangkok, Thailand

Vichien Srimuninnimit, MD. Siriraj Hospital, Bangkok, Thailand

Both trained and worked in the US for many years.

Be very up front in telling them that the family cannot afford the full costs of the drug without wiping out its assets, you are aware that the ultimate prognosis is terminal in any case, and that you need some clear estimates of probable survival time under different treatment scenarios in order to make some very hard choices. (Obviously, before saying that in front of your mother in law, you'd need to have discussed it with her first. Bring all records with you.) Thai doctors are usually very uncomfortable speaking frankly on this subject, by putting all this out there as a given you may make it easier for them to be forthcoming. If she has not actually been tested for the EFGR mutation, these doctors would probably be able to tell you where and how to get that done in Thailand. And lastly, they'd be in a good position to advise whether there is any way to get help from Astra Zeneca.

In addition to being on the Chula and Siriraj faculties (where access might be time consuming and difficult), these doctors have private practice as follows:

Dr. Vichien: Vichaiyut hospital. I don't know the hours but you can call the hospital at 02-265-7777. I would expect a consultation there to be under 1,000 baht.

Dr. Virote: BNH hospital (Sundays 9:30 - 11:30).A consultation there would cost about 1000 - 1,200 baht.

[cerbera]

Sheryl

Im speechless and tearful.

Thankyou for this from the bottom of my heart. My wife will be equally grateful.

My beautiful mother in law is right now swinging my 6 month old daughter. Shes wearing her favourite hat, reading Thai rak and she looks so strong.

Its quite difficult.

thankyou again

Sawasdee Khrap

[uhuh]

mutation testing is usually not done in Thailand, even in the best hospitals, they will just prescribe Iressa (even off-label) and see whether it helps

you can buy generic gefitinib in India, eg Geftinet. They will not sell in Thailand, you must fly there. Price is one tenth of price in Thailand.

[cerbera]

There is an assistance programme for Iressa in Thailand. My wife tried. She answered all the questions asked and we were offered no help at all. Apparently this is a first in our doctors experience. Im sure its got nothing to do with the fact that Im from the UK.

At 70,000Baht per 30 tablets for Iressa in Thailand. We have to look at sourcing the generic version

we will try the other suggestions made and I am so grateful for Your help.

[tim armstrong]

Cerbera, I am very sorry to hear about your mother in law, who you are obviously very close to. I've had both personal and recent family experience of cancer. Sometimes it just makes no sense, and being strong is difficult. I wish you and your family all the best.

With regards to Astra Zeneca, having worked with several pharma. companies, sometimes the best approach is to go straight to the top, rather than through the medicos. Tim