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So Now Tarceva


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Hi All--

Again many thanks for feedback, good wishes, etc.

After the bad episode with Alimta I started 1-a-day 150MG Tarceva pill 10 days ago.

Last Saturday I was finally out/about walking my streets here in Williamsburg. Especially nice after 8 days of continuous hard rain here. Walked some 12 to 15 blocks with little/no SOB.

Then yesterday went out on a little shopping spree in the 'hood--maybe 8 blocks out and back--very SOB all the way.

I'm guessing but I suspect that on Saturday I was enjoying the respite between the waning effects of Alimta and the nascent effects of Tarceva. But anybody's guess is as good as mine?

Many thanks to all who responded to my post on brain irradiation. Yes--I now know the difference (sort of) between PCI and Whole Brain Toast--(now unofficially WBT.)

I saw the rad onc on Tuesday. He had met with the med oncs and the tumor board. The conclusion was that despite recent setbacks I've generally done well over the past year. So why rock the boat with PCI.

BTW my cancer is NSCLC--adenocarcinoma of right lung--3.5 cm tumor. Stable over last year.

Today I saw both my pulmonologist and med onc. The pulmo increased the dosage of Atrovent to 4x daily and is replacing it with something that contains both Atrovent and Albuterol. He said part of my SOB problem was that I was under-medicated for COPD. He also ran an oxygen test--doodad on finger--resting then after mild exercise. Conclusion is that I do not need O during the day but since I already have it at home I should sleep with it on.

Med onc said he had some concern about the rare fibrosis reaction to Tarceva--sent me to have a new chest x-ray. Results tomorrow.

The x-ray tech showed me the screen images. The good left lung is nice and dark--meaty-looking all over. The right lung looks like it's lost in a fog bank Down East. We'll see what the pros say tomorrow. I really had no idea what I was looking at.

For Bunny--yeah, I've stuck with the Brooklyn VA. I've gone to MSKCC twice for second opinions. I like the people at the VA better. I have a rapport and incredible access to both my attending med onc and the chief--his boss.

MSK offered exactly the same treatment plan as the VA--same chemo drugs--same schedule. MSK has a better fruit buffet and the mink coats coming and going can be impressive. But frankly it's a little Uppity East Side for me, even though that's my old 'hood.

All these guys/gals have the same books and access to the same clinical trials, new meds, etc. They're all under tight supervision and peer review. For me the key is going somewhere where you can establish rapport and a +/- personal interest with the docs.

I'm hopeful the Tarceva works for me. If not--we'll try something else.

BTW I also have an ace-in-the-hole here. Back when I was first diagnosed a friend of mine who happens to be an M.D., though a psychiatrist, told me to go ahead and do whatever the oncs said but also to get myself a mushroom-derived nutritional supplement called AHCC. He sent me some documents and the web site. I've been taking this stuff faithfully for a year though about the time of the Alimta episode I had run out and couldn't get any until I was out of the hospital. I mentioned it to a few oncs along the way. Got the raised eyebrows and rolling eyes.

But the stuff is front line treatment for many cancers and other diseases in Japan--has been for years. Supposedly it fortifies the immune system and activates the "hunter-killer" white cells that attack malignant cells.

I reluctantly mention it here with personal assurance that I have no financial or other interest in this stuff--other than the possibility that it may be aiding my struggle--and maybe could help someone else.

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I hope the Tarceva comtinues to work well for you. Stable is good. I also have heard of the AHCC. It sounds very interesting. Could you pm some info that may be pertinent to me. Thanks!!



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yes, I feel that about MSKCC too. mom went local (in Jersey) with her first round of LC, but really fell in love with her 2nd opinion referral at MSK so we stayed with him when the cancer returned. (truth is, we all fell in love with him, HE'S GORGEOUS :lol: ). I have a close friend being treated for throat cancer at the VA in Brooklyn, and he feels very very well cared for, as well. it's so good to hear.

as for tarceva, I don't want to jinx it, but my mom is 3 weeks in with no real side effects - skin is a tiny bit dry, but that's it. (knocking on wood here) so I hope you have the same experience.

great update, bc. I really like hearing from you! keep us posted.



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We havent crossed paths before, so let me first say 'hello!'

I wanted to chime in and say that I've done quite a bit of reading on 'mushroom-derived nutritional supplements' I wouldnt doubt that they help you!! I was looking into getting some for my mom, but she is afraid of taking anything while undergoing her chemo. She doesnt want anything to counteract its effects since she has been responding well. When she is done with her chemo though...we are planning on looking into it further. I thank you for bringing up the topic!

A little off topic, but still relating to alternative medicines so to speak, my mom has also been getting reflexology treatments and reiki treatments. We wonder if these have anything to do with her success! If nothing else they are relaxing for her....which cant be bad. We want to get acupuncture, but there isnt a practitioner close by. I truly believe this would be helpful. For now the reflexology is the closest thing to it we have access to

I'm glad to hear you got out for such a nice long walk!!! Its good for the body and the mind. I cant wait for the day my mom can do that as well

Best to you~

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good update. thanks.

I have a whitish lung too that keeps me at a snail pace. It does blacken up now and then. Please be aggressive with this early on. I made the mistake of being too patient.

Let us know what the report says and what the treatment will be. I will ask my pulm. if the med you take may be helpful for me.

Glad to hear that the VA treats you so well. Too often, irrespectful words are said about the institutions.

Best luck with the Tarceva.

Cindi o'h

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So today is the 2 week mark on Tarceva.

A few minor sores in mouth. Dry skin/mouth/throat. No rash so far.

Dryness in mouth/throat seems relieved by oxygen from concentrator, which contains a humidifier.

The pulmo told me to use the O only at night when sleeping. The onc told me to use it whenever I felt like it.

Since I find it uncomfortable and disruptive of sleep I'm going with the onc--use it for an hour or two when throat gets hoarse.

That BTW seems to be something new with the Tarceva--hoarseness. Anybody else have that reaction?

Toodles and good cheer to all...

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Thanks for mentioning the AHCC you take. I will definitely check it out. I take a mushroom supplement also, though it is not the same thing. Sure appreciate your note and point of view about care. Here I have one choice for the cancer treatment due to the insurance we have. I supposedly go to a "research center". They have nothing to offer in radiation except the regular stuff they have been doing for years. Seems to me a research place would be trying some of the new drugs or using the radiation that pinpoints tumors and radiates only those spots. Enough of my spouting off. Glad and thankful you are doing well. you continue in my prayers. pammie

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Hi bc. I hope the tarceva turns out to be more agreeable for you and that it does the job. I don't take musroom derivatives or mushrooms, but use other supplements as immune boosters. I think they help. I told my oncologist about them, and he was supportive of taking them.

Don M

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