Things Are Getting A Bit Complicated

[Barb73]

We were over at the Cancer Center today, and spoke with the oncologist.

He told Bill and me that the only thing moving in the growth area are the neck nodules. The chest looked OK.

Treatment is in the planning. He mentioned two: one was taxotere and the other was Navelbine. He said that of the two - the taxotere would be considered as having more side effects.

I asked him about the clinical trial. The one that seemed to be a possibility was one with a new drug and Tarceva. It is a Pfizer trial. They would pay for the other drug if he was to receive it, but not for the Tarceva. They said that it is considered a regular chemotherapy. We would need to pay for it, or our healthcare drug plan - if our healthcare plan would cover it.

We read the papers (even though we do not know if Bill qualifies). The new drug side effects seem quite scary. Maybe I'm just being overly sensitive as I read it, but I am also thinking about all of this for neck nodules?

Someone, please talk to me. Bill and I are at a loss as to what to do. So many thoughts are running rampant through my mind.

Thank you for any input. Any opinions would be appreciated on this.

Barbara

[RandyW]

Your insurance should cover the tarceva. tarceva is a proven worker for a maintenance drug. Its not considered a curative but a maintenance drug Kinda like Insulin for diabetes!! Navelbine or Navy bean as some call it is also good It also worked good for Deb as did tarceva!! Navelbine does have mild side effects also! tarceva might be a little worse on side effects but not as bad as taxotere! We did not try taxotere as I recall after all these years so...

If you decide on the trial please dont go into it thinking guineau pig! thats just not right at all. There are not enough survivors and early diagnosis's to be effective enough for good trial participant rates. think of yourself as a pioneer in cancer research adn be proud of doing it. That was something that deb was afraid of when she had cancer so we did have that discussison and it was her decision not to be in trials!

Thats my info for now! If I can help just PM me and I will see what else I can dig up for YA!

Hugs and prayers Randy!!

[Barb73]

Thank you, Randy, for the response. I am at a quandary right now. We have been very strong for the past four years. This month is the 4th anniversary, and Bill wants to do what can help at this point - either us or others.

Your input has helped a lot. It is very appreciated.

Especially helpful was your stance on being proud. That was my first thought when we spoke of a trial with the doctor today (that is, if Bill were to be accepted).

However, by the time we got home and I read the descriptions in total, my stomach began to sink.

I can understand why Deb thought otherwise of clinical trials. It's not an easy decision.

You told me about the other two drugs and that helped a lot, as well.

If I come up with any more pertinent questions (although I don't even know what to ask at this point) I'll definitely ask you in a PM.

Thanks again, Randy.

Barbara

[cat127]

Is the trial one of Tarceva plus Sutent? Just searching clincialtrials.gov to see what the study may be. I can tell you this, as someone in the field, those forms are required to tell you all the possible risks. If you look up the other drugs, they would have a lot of risks too. Sometimes it helps to see the percentage of patients and the grade of the toxicity. Smaller percentage, less common. Smaller the grade number, less problematic the toxicity. If this is a Tarceva plus experimental drug, then the list of risks is also large because we don't have enough information about the experimental drug, and some of those risks are taken from what we have learned in animal studies. One thing about the trials, they monitor you like a hawk, if that helps at all.

I can understand the fear, I really can. Though I'm grateful everyday for the people that choose to go on a trial, without them we don't know anything. They really should be proud for adding to the database of knowledge!

Talk with your dr, he can help put a lot of it into perspective for you.

[Barb73]

Cat,

Thank you. I am saving the information from here so that we can feel more knowledgeable and more at ease.

(The trial drug is a number PF-3512676. Sutent wasn't mentioned. This new drug is supposed to enhance the immune system.)

Things have been a bit shaky for us today. Our son called to say that our daughter was in the hospital with breathing problems. She has asthma, and does not live nearby.

My mind, which is usually pretty steady, has become full of jello.

We have the forms, and I will go over them again and put the study in better perspective. Also, I will, as you say, talk to the doctor. Writing some questions down for him ahead of time might be good use of waiting time.

Your reply has added to the picture. It is appreciated, Cat.

Barbara

[cat127]

Oh Barb, I'm sorry you are having such a tough day. I'm sure you were very scared to hear about your daughter. Take a few deep breaths and maybe put down all the info for tonight. Look at it again when you have a fresh eye.

OK, that was the other study, but I was lazy and didn't want to type out the code name for it. It is Phase 2, which means there is definitely some human info out there for this drug, but they still don't know a lot and are definitely going to put everything they can into the documents for you, to ensure that people are warned of any and all possibilities, which isn't the same as likelihoods.

As you look at the papers and at the side effects that most concern you, be sure to ask the dr if there is any information out there about the severity of those toxicities or the frequency, and hopefully he can help you with that.

Good luck and I'm sure tomorrow will dawn much brighter than today.

[Barb73]

Thank you, Cat. We read your posting and both of us feel more together now. We feel that we can even order Chinese and maybe actually eat it.

Phase 2 sounds promising. They wouldn't get to that phase unless enough people showed something good.

Also, update on daughter: our son/her brother just stopped by and is going down to her condo with his wife and they will feed Jeanne's cats. I looked up pulmonary embolism and it can be treated with meds. Hopefully, that will be resolved.

We are adjusting to the elements of today, and you are right. Tomorrow will be better.

Too much was happening all at once that was unfamiliar and we became overwhelmed. Bill was solid. It was mostly me becoming unhinged. He doesn't cave as easily as I do.

Thanks again, Cat.

Barbara

[Wendy]

Hi Barb,

I participated in the drug trial for IRessa several years ago. I was scared to death after I read all of the warnings and potential side effects of the drug I may/or may not get.

I teetered back and forth whether the trial was right for me. In the end, I chose to participate with the understanding that I could stop my participation at any time. I felt that this gave me a little control. If it was making me sick, too many side effects, adverse results I could walk away.

There is no doubt that it can be a scary decision. For me, participation was to my benefit - I was given the actual trial drug and its probably kept my cancer at bay.

I did rely heavily on my oncologists help in making the decision and I also discussed it with the hospitals research nurse and my surgeon.

Whatever you both decide to do, I hope that you get great results and those neck nodules disappear in no time.

Wendy

[Barb73]

Hi Wendy,

Knowing of your participation in the Iressa trial is important to us. It is a pathway that you feel helped your control of the disease.

When I told Bill that this board would be giving us information, I had no idea what kind, and how generous it would be.

This is helpful and does give us more on which to rely experience-wise. For the next few days, as we wait for the call from the oncology people about whether or not it will be "a go" for Bill, we will be able to weigh things.

It may turn out to be not in Bill's treatment, but at least we will know what to weigh if it is.

The initial acceptance will be up to them, but we do feel better informed as we move forward. I don't know how people do it without supportive input.

We know that having been a part of Lungevity has been a plus in many ways. This is one of them.

Thank you Wendy.

Barbara

[Barb73]

Suddenly, with one phone call today, the whole thing became simple - no complications.

Bill was not accepted for the trial. But, the oncologist wants to try Bill on Tarceva.

We went over to the Cancer Center today to pick up the prescription, and take it to our pharmacy.

He will be starting that each day. We are praying for a good result, as we all do for each of our loved ones, and ourselves, as we move along.

The experience of thinking about the trial gave us a new way to look at those things. We would have gone ahead with it had he been accepted. It seemed to be the right thing to do, and we were getting a bit anxious to begin. We did know, though, that he might not be a candidate.

I thank you all so very much. You all gave me confidence, and helped with appreciated input on some of the drugs that may, or may not come our way in the future (navebine and taxotere). Thank you.

The doctor explained Tarceva, and I have read much about it during the four years of posting about lung cancer.

May you all know that I feel really good today emotionally. Our daughter's clot is being worked upon, and they are giving her a great examination to see what is ailing her, and causing it.

She is at a very good hospital - Robert Woods - here in New Jersey.

I send love you all,

Barbara

[recce101]

You're right, Barbara, what a difference a day makes! Knowing you, I have no doubt that you're very well prepared to help Bill through the various Tarceva side effects, which typically start about a week into the program and peak sometime during the second month. His first step, beginning right now, should be to get lubricated and stay lubricated! (The skin, that is... ) Aloha,

Ned

[Barb73]

Gee, Ned, when I first read the word lubricated, I automatically thought here we go with the green tea, and all the liquid Bill can drink.

For the skin, I am imagining: lubriderm? skin lotion? something or other to do with skin lotion?

I told him he might get acne. He said, "What?" He may turn into an old teenager.

Thank you for the heads up, Ned. Hoping for a good result and/or no movement at all.

The doctor's office called to see when we are beginning the pill. It will probably be tomorrow due to the pharmacist needing to order it today.

Barbara

[recce101]

Gee, Ned, when I first read the word lubricated, I automatically thought here we go with the green tea, and all the liquid Bill can drink.

Sorry for being a little obtuse. I was thinking of the substances one might ingest as a "social lubricant" as in "Hey, look at George — he's really lubricated tonight!" So now that it's clear what I didn't mean, what I did mean is to shower/bathe with a non-drying soap or body wash (such as Dove Body Wash Sensitive Skin) and keep the skin lubricated with a hypoallergenic fragrance-free lotion such as Cetaphil or Vaseline Intensive Rescue. I'd have saved myself a lot of discomfort if I'd been doing that before the rash hit at day 5.

Aside from staying lubricated, my other countermeasures are oral doxycycline every day (some oncs prefer minocycline) then, as required (not often anymore), a dab of clindamycin gel on any new red bumps/pustules and some Cordran tape on inflamed/split fingertips. I've never needed medication for the diarrhea — it's more of an inconvenience than a problem.

If the side effects get to the intolerable point, most oncs will have the patient stop the Tarceva for a few days, then resume either at the same dose or at a reduced dose. At about the one month point, I took a 3-day break, then resumed the original 150 mg dose, and when the side effects returned they were never again as severe as before the break. Aloha,

Ned

[SandraL]

Hi Barb. I wish you the best of luck with Tarceva. My initial outbreak of acne and rash all over my body was unbearable. But, antibiotics and going down slightly in dose seems to have really helped with all that. It has now been about 2 months, and the acne part is gone but I do have really really dry skin and some rash. I have found a lotion called "eucirin" to very helpful with that. It didn't cost a lot and was available at the drug store. I am glad things are going better today.

Sandra

[jaminkw]

Barb, glad things are coming into focus for you and Bill. Hope the Tarceva is the miracle drug for him that it's been for so many. And very glad to hear you are satisfied with your daughter's medical care. Keep us posted.

Judy in Key West

[Barb73]

Ned,

I am going to copy/paste every suggestion here for the skin care and pin it to the bulletin board in this room.

We need to be prepared and tomorrow at breakfast I will give Bill the notes on rash, etc.

It is always best to know ahead of time anything that can occur - no surprises. At our ages (Bill's and mine) anything like a rash can produce anxiety which, but if forewarned, calms.

Since Bill loves to lather himself with Lever deodorant soap, I had better give him my Dove. We can shop for the rest tomorrow.

Are the oral doxycycline, clindamycin gel and minocycline by prescription?

Thank you so much. You have to know this is helping eliminate the unknown for us.

I had read about the rash, but somehow, you forego remembering all the ointments, lotions and products people have advised to each other over the years.

We won't need to research.

This list will be with us.

Barbara

[Barb73]

Sandra,

I am copying this, as well. Thank you for the good wishes, and Bill will be reading this post.

The more he reads, the better he will react to the changes. I'm glad you added a lotion to the list. This "eucirin" may be something we can use.

The main thing, Sandra, is that Bill be familiar with the regimen's side effects. He is a guy who can face anything they throw at him, but he is a much happier camper when he's forewarned about things.

Thank you very much.

Barbara

[Barb73]

Hi Judy,

Yes, today is a bit smoother than yesterday and the day prior. We have our feet more firmly planted on the ground.

The oncologist explained that for some there is a really big plus with Tarceva. Although others may not see that occur, it may hold things steady/stable for them, and that is a good thing.

Here's to hoping. We hope that there will be a good result.

Thank you for the good thoughts, and your mentioning our daughter.

She called me today (giving me the updates on her condition) and said that she feels that they know what they are doing. One of her meds (she's asthmatic) may well be the cause of the clots.

One she takes has clotting as a possible side effect. That, and her estrogen levels may have collided and the result was the clot.

Sonograms have been taken of her heart to see if there is anything there of which to be concerned.

They are dissolving the clot she has and want to try to prevent any future events.

Glad to be able to say that I have a better feeling today than I had yesterday. She is our rock who visits every Sunday without fail to be with us for dinner. The only times she has missed were when she had a cold and didn't want to infect her Dad.

Hopefully, the clot and the reasons for it will be resolved, and she can breathe easier, literally.

Any prayers would be greatly appreciated.

Thanks again, Judy.

Barbara

[recce101]

Are the oral doxycycline, clindamycin gel and minocycline by prescription?

Yes. My onc gave me a prescription for the oral doxycycline and clindamycin gel simultaneous with ordering the Tarceva. You might be interested in this "What I Really Do" article by Dr. West — he favors minocycline over doxycycline, but doesn't prescribe it unless the rash reaches at least moderate severity:

http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/

Ned

[Barb73]

Ned,

A special thank you for the Dr. West link.

I am going to consider all of you here with this information on Tarceva side effects "angels for preparedness."

There are no words to describe what being knowledgeable will do to give us a chance to survive any side effects.

Having saved the link to Dr. West's article, we can move forward armed to the hilt.

Of course, the one thing mentioned, that of having NO side effects is helpful, too. Knowing that means not staying on something for naught.

Gratefully,

Barbara

[jaminkw]

Barbara, you are doing exactly what I've always thought I'd do if I had occasion to go on Tarceva--tap into Ned and Sandra and be prepared to do whatever they did. I can imagine the relief in not having to do all the research. Maybe I'm lazy but why not take advantage of the work people who do it so well have already done!

Things sound very positive for your daughter. Important that you both have confidence in her doctors. The darn medicines they give for one thing often give rise to another problem. Sometimes it really is trial and error as everyone's body reacts differently to drug and treatment.

Good luck to you and Bill and I agree, have all the remedies for the rash on hand and maybe he'll get none at all!

Judy in Key West

[Barb73]

Hi Judy,

Your words are so very encouraging and uplifting. Of course, we sort of, kind of, are hoping there will be some kind of rash.

I read Dr. West's posting about Tarceva and it seems that the rash may well be an indicator that the drug is "doing its stuff."

So, we will look at any skin eruption with a little badge of confidence.

However, if he doesn't get any we will move onto something else (navebine?) if it means nothing is working with this. (Positive thinking going on here.)

Yes, you are so right about Jeanne and that medicines for one ailment may very well cause another. She was told that one another complication is the estrogen level. It's quite high. Even Mother Nature sticks in her two cents.

Our youngest son, Joe, called her last night from Florida, and she was happy to hear from him. Things are under control and that gives me pause to feel better about things in Jeanne's department.

Thanks, Judy, you have given me a good feeling.

Barbara

[SandraL]

Hi again Barb. This is what my medical oncologist told me. It is a good sign if you do develop a rash but if you don't that doesn't necessarily mean it is not working. But she did say it is dead on easy to tell if Tarceva is working. If you have any growth then it isn't. So if you have taken it for 6 to 8 weeks or so and there is progression then it isn't working. The other big sign that it is working is how the patient feels. It is supposed to lessen any symptoms/pain you are experiencing. In my case, I have been on it for at least 8 weeks and I am pretty sure my lung is feeling better. I am just waiting for that to be confirmed by my med onc from the latest ct scan. So, if it isn't working, they take you off it pretty quick and can get you on to something else. In your case, I pray it works and keeps this nasty thing at bay for a long long time.

Sandra

[Barb73]

Hi Sandra,

I am praying that your scans show that the Tarceva is working.

Bill will be taking his first pill at about 1 PM this afternoon. He ate his lunch at about 10:30 AM and is waiting the two full hours.

He has reviewed the side effects and is prepared for almost anything. I told him about not going out into the sunlight without proper covering. He has a penchant for trying to be out there doing yard work.

It's a release for him, and has a calming effect.

So, here we go Sandra.....getting started on a somewhat unknown journey, and I think Bill is optimistic. He was singing this morning. He sings when he is looking forward to something.

I didn't go into too much today because I don't want to overdo, and cause any unnecessary anxiety.

Here's to prayer and positive thinking for good outcomes,

Barbara

[SandraL]

Smile...singing is such a good sign about how one is feeling. If I am singing and making up crazy songs, and dancing around a bit in my kitchen...well my kids may think I am zany, but they are aware that the crazy mother they love is in good spirits!

It will be awhile before he experiences any side effects. Although I am not sure how quickly the diarrhea can kick in. I have only had little bouts of that because I am also on pretty heavy doses of morphine that have the opposite effect. I believe I have heard from others here that can happen fairly quickly. And it can be quite awful. I am sure you are stocked with Immodium, but if not, take a nice walk to the drug store, sing along the way, and get some. I have a full supply but unfortunately reach all too often for the Senokot instead.

Have an awesome Friday!

Sandra