I had accepted the fact of my stage 4 nsclc, plus the fact an oncologist judged I was not a viable candidate for chemotherapy because of other health issues.
I accepted that I needed to just get on with living and trying to make the best of each day. I receive palliative treatment, the extent of this being medication for my comfort and the support of my hospice team and my general practitioner.

Then finding this board, and gaining insight and knowledge from others, I began to have self-doubts. Had I been too accepting of the oncologist's dismissal regarding chemo? After all, the lung consultant who treated me in hospital for the pulmonary embolism and who discovered my cancer had referred me to oncology with the expectation I would receive chemo.

Joining this community gave me the confidence to question everything. I saw the lung consultant again, and he still thinks I can manage chemo. I had the consultant endocrinologist review my case, and he thinks it would be pointless for him to offer further interventional treatment, given the stage of the cancer, so there's no need to take that into account when considering chemo.
Last week I asked my hospice doctor to refer me to an oncologist for a second opinion, and I don't know why but that required some courage on my part. He agreed, and I had the consultation this afternoon.

This time was different. I felt confident, I had more knowledge, I was able to ask informed questions....and all because of the good people in this HB community. I felt as though you were all behind me.

The oncologist today was a better comminicator, and altogether a better doctor than the first. I'm satisfied he made a thorough assessment. He sat with me and went through all the casenotes, all the scans and CT results were shown to me and explained....this hadn't been done previously....and all my questions were answered fully. He also told me doctors constantly referred people who would not benefit, who would be harmed by chemo; that in general, doctors didn't have a clue about chemo and its effects.

Again today, I was told I can't have chemo, but I do have a full sense of acceptance now. I owed it to myself and to my son to seek this second opinion, and I feel a weight lifted from my shoulders. My peace of mind has returned.

I was also told the tumour had spread into the chest wall....the oncologist was surprised this hadn't been explained to me previously....and this is why I was suffering so much back pain, and that a course of radiation would be the next step. So I start next Thursday, to have radiation treatment every day for two weeks.

Thank you, everyone.....your posts have helped raise my awareness, and a better management of my illness. So important, too, you have all given me a feeling of connection. You are all in my prayers.

Hi, again.

My weekly visit to the day-care unit at the hospice was today. I had my usual session with the doctor, and told him about the oncolgist's decision to treat me with radiotherapy.
He expressed surprise, saying he wouldn't have thought my present condition warranted radiation: my breathing isn't seriously impaired, and he thinks the extreme lower-back pain I have been experiencing recently will subside since the discovery over the weekend (another post) that I had been suffering with a bladder infection, which is now being treated. I'm not on a high dose of morphine, just 60mg Zormorph every 12 hours so he thinks my pain levels are being managed and that I won't be hitting the additional doses of the oral solution so hard now the infection is under control.

So I'm confused again! The oncologist had told me the radiation could slow (or did he say stop?) the growth of the tumour further into the chest wall; that the upper back pain I have is due to the cancer having reached the chest wall,or possibly breached it. (It's been a while since my CT scan, so we don't know yet.)
To me, slowing down any growth means giving me a delay, extra time, before serious breathing difficulties develope. My hospice doctor asked me if I had thought about the metastases, that radiation wouldn't slow their growth.
That question hung in the air.

Is radiation normally offered when breathing is more impaired than mine is at present.
And would the side-effects spoil the "quality of life" time that I have? I read somewhere that energy levels diminish while under treatment and it's several weeks thereafter before you return to your baseline energy level. I have been feeling great fatigue, but the antibiotics for the bladder infection have already kicked in, these past two days, and I have had much more energy.

If someone could tell me about the usual level of fatigue from radiation, I'd be grateful....and any general advice would be welcome. I've been reading up on tne net, but the best source is based on experience shared in this forum.

Sorry for rambling on, this is the only place where I can share my thoughts or my doubts.
You are all in my prayers.

ellen-

I'm just wondering ....why Tarveva (erlotinib) isn't an option for you. It is a targeted therapy, unlike chemo. It probably sounds like I'm beating the same old drum, but the best success stories I have heard involved this drug. While I don't know your condition, please check in to it. You have such a great attitude and sweet spirit ...it seems like it could be worth a try. (?)

Janmarie ....what do you think?

conan

I too do not know why they do not try Tarceva? What have you got to loose as it will either help which could be a dramatic change or it will do nothing. Yes it is expensive but hey this is your life!

Early in all my research I read a story about a woman that was admitted to the hopsital with a bad pneumonia that required intubation do to extremely low oxygen levels and being placed on a ventilator. Even on the ventilator with 100% oxygen being given and maximum ventilator support they could not get her oxygen levels in her blood to come up. Doctors did not expect her to make it through the night but she did. Xrays showed she not only had a pneumonia but had lung cancer too so the doctors told her husband that she had less the a 5% chance of coming off the ventilator and leaving the hospital alive. Then her doctor decided to try Irressa( along with her IV antibiotics) and I guess they must have crushed the pills and put them down feeding tube,Within hours yes hours her oxygen levels started coming up and within 2 days she was off the ventilator and doing alot better and a few days later went home and was continued on Irressa with dramatic improvement in her lung cancer all because her doctor felt "what have I got to loose?" Instead of making funeral arrangements her husband took her home where she continued to do well and was extremely worried when they decided to pull Iressa from the Market. It was her dramatic improvement and story that made me feel so very hopeful about Irressa then Tarceva when Irressa was pulled from the market. My mom's own dramatic improvemnet after starting it when she too had the pneumonia makes it hard for me to understand why some dotors are so unwilling to try it.

For those of you new here Iressa was pulled from the market as they claimed it really did not work that well and new clinical trials were run that supported this so they took it off the market at about the same time Tarceva was approved. An interesting aspect of this is that there is another message board where there were a number of people that started Irressa back in the original clinical trials or right after it was approved and when I first read their stories some were 3 years or more NED ( No Evedience of Disease) so someone please tell me how is that the drug was not working? They have since been switched to Tarceva and most but not all have continued NED on it! Thank God!

My take on it is that the truth is only a small percent of people responded to Irresse so sad to say that did not mean big profits for the drug company so they did not want to have to continue making the drug as it was not a big money maker so re-ran clinical trials to support their decision and claim it did not work that well.( it would be easy to stack a clinical trial in favor of people that would not respond being that it is only a small percent that do respond). So if you question an earlier post about money being the thing that drives drug companies and not our health like they want you to believe how else can you explain taking a drug that was keeping a small percent of lung cancer patients NED for 3+ years off the market?

There was some other drug I can't recall what it was for that did not do well in the human market but worked well on dogs yet the company pulled it as they did not stand to make enough money on a drug that was only used by dogs despite the fact it was saving the lives of the dogs.My vet told me about this as he and I have had some great chats when I take the dogs in to see him. JanMarie

JanMarie,
I hate hearing stories like these...It's a shame that pharmacuticals (sp?) only care about their profit margins rather then the patients that they are supposed to help. More money in suppling a drug then curing the patient. This is just sick...

Ellengrace..
My father is undergoing radiation along with Chemo to his lung. He has gone thru a few sessions of radiation and he has become very fatigued. I would estimate that during these sessions he sleeps between 60-80% of the time. They did pull him off the radiation for a few days to allow his white cells to come back to normal, and during that time off from the treatment, he has recovered and I would estimate that he is close to his normal energy levels again. They plan on doing this for a few more weeks - 25 treatments total...and he is about 1/2 way into this.
To be honest, I am unsure exactly why they chose to give him the radiation treatments...the oncologist told me it is to ensure that the tumor will shrink further...
He has had radiation in the beginning for brain mets and has seen good success with the treatments. With this second round, he is more tired then the previous treatments.
I will keep you in my thoughts~

Conan and Janmarie, thank you for your replies. I had thought Tarceva was one of the chemo drugs, so I hadn't looked for info on this until reading your posts.
I found there had been a BBC news item just a few days ago about the controversy over Tarceva being freely available in Scotland but not in England.
The English Health Authorities are saying there has to be "best use of resources" so of course it's down to money. This drug costs £70 a day, so the powers-that-be must think that's more than lung cancer sufferers' fair share of "resources".
Another news report covered the story of a rebel English doctor who has prescribed the drug; and when the health authorities stepped in, to stop the patient's supply, the patient gained an injunction which ordered the continuation of treatment until a decision was reached in the High Court. The Court process is so slow...much to the advantage of the cancer sufferer.

I'm going to pursue this....I'll ask the oncologist when I see him next week at the radiotherapy session.

However, I also read that Tarceva causes blood clotting, which is one of the reasons the oncologist gave about chemo being unsuitable for me, as I have a predispostion to blood clots. After the pulmonary embolisms and two weeks in hospital, I was sent home and developed multiple clots in my legs (which swelled up massively to the point I could hardly walk) and was admitted to hospice for two weeks treatment...and while there as an inpatient still developed five new clots in my left arm. The onc said that even with the Innehep/Tinzaparin I use, that chemo wouldn't be safe. Have to wait and see what he has to say about Tarceva.

So, thank you once again for opening my eyes!

Jeanie: thank you for your advice. It does sound as though I'll have to plan ahead for a huge reduction in energy levels. I have told my son we have a lot to do this week, before I start treatment. He's been avoiding any business discussions as well as all the legal stuff that needs to receive attention, so I'm using the "anticipated fatigue card" to my advantage and pinning him down for the next few days, to get things sorted.

Jeanie, I'll be thinking of your father as he continues his treatment, and both you and he are in my prayers.
Conan, I hope Patsy is comfortable, and the children are well.
Janmarie, it was good to hear your Mom is able to sit with the family, in her recliner, and receive visitors but I can imagine the sadness you feel as you hear people say goodbye to such a wonderful old lady.
You are all in my thoughts and prayers.

ellen-

Well done! -I am elated to see you are still in the fight. I have been geuinely concerned for you. But it is obvious that you are a good researcher and privy to the politics of heath care.

What have you got to lose? ...move to Scotland if you have to! :D

I have never heard of complications with clotting and Tarceva, but Avastin, another targeted therapy that seeks to restrict blood flow to the tumor would be a problem. Please let us know what you Onc says. Perhaps you becoming better informed could force your Oncs hand a bit.

If all else fails Ellen, maybe you might consider alternative medicines. I'm trying to learn more about them all the time. I just posted a new thread dedictaed to learning more on that topic.

keep the faith,

conan

Hello.. my mother was stage IV NSLC with spreading to the lining of the chest. I found out about Tarceva through this board and Janmarie's posts, while doing a random search because we were told by the second oncologist that there was nothing that could be done. We then went to a third oncologist who immediately prescribed the Tarceva, and thank God, my mother was one of the 10% of people who respond well to the drug. We also looked into subsidy from Medicare to help pay for the drug. Also the company who manufactures the drug has a program that patients can apply to if they need financial support. My mother's cancer is in remission and is busily and happily cooking up a storm for Thanksgiving dinner. Tomorrow I will give thanks to God and to this lung cancer message board for giving us another Thanksgiving with our dear mother. One never knows what may happen in life, but I've learned to have faith in God, constantly ask questions and try new things in terms of possible cancer treatments. There is a possibility my mother can experience relapse but then we will try something else... God bless and stay hopeful. Kris

kris-

That was a wonderful testimony of faith and hope! You just made my week. God bless you and your family as I know you will have a special Thanksgiving.

conan

Get some paw paw cell reg....take it according to directions...
It stops cancers from being able to make blood vessels and so it starves. Any cancer. This has been thru clinical trials, is safe is effective, is cheap and you can do it at home.

Make sure the paw paw says 'reg'...no side effects.

Live long and be happy...

Old Fogey