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Things Are Getting A Bit Complicated


Barb73

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I found that sometimes with my sister, I just wait until she tells me of a symptom before telling her that it is likely the Tarceva. No need telling her the possibilities. If she is like our mother, she'll just develop all the symptoms that are possible if she knows about them :)

Kelly had the diarrhea kick in about Day 3, with her Dr telling her that just wasn't possible. But she continued to have a lot of issue with it. We went to 150 mg 2 of every 3 days. Ultimately, we took a drug holiday (which we then spent in Paris!) and she started back on the drug at 50 mg/d and while she has had some rash issues, and her mouth is again sore, she has had no diarrhea, her appetitie is fine, and the mouth isn't too sore that she can't drink red wine. :)

She has had 2 scans since starting and each one the SUV was lower than the previous scan. We scan again in 1 week. Fingers crossed. It has been a rocky bit of road, but a good one for us so far. So here's hoping your road is way smoother but equally as successful!

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Sandra and Cat,

Boy, am I glad I have all "you guys" in our corner.

I am thinking I'd better get to Rite Aide quite early to fortify against that particular side effect. :roll:

Bill has more of a concern about rashes. His skin is already quite dry. This morning he used my Dove body wash. Thankfully, he gave in quite easily once he realized he already had dry skin and might even feel better changing the venue.

Bill doesn't need to be surprised by a bout with diarrhea. We have some on hand, but it probably is best to have some in reserve.

It would be wise to be making sure that we have whatever OTC we can get and then, if necessary, tell the doctor later on of anything we may need by prescription.

The people here - all of you - have given me the comfortable feeling that Bill and I are not alone. How do people do it without a support group? I cannot do it alone. I'd feel too isolated, and vulnerable.

I reference this site often in my conversations with people. Our GP knows I belong, and told him that I wouldn't know anything if it weren't for belonging. And that word "belonging" may sound corny, but this has been my/our fortress.

Barbara

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Dear Denise,

Thank you for thinking of me. You have so much on your plate and here you are thinking about us.

I surely understand crazy weeks; when so much is coming at you, it can make you dizzy.

Unfortunately, one of my big problems is that I need to think things out, but things have been moving too fast for me.

What a luxury to be able to discuss things back and forth. Nope. Those days are over. Say yes or no, and be in the middle before you know it.

Cannot complain, though, we are still here, and even though I may have some "moments," I have this board and all of you on whom to rely. This is truly a blessing - no doubt about it.

Hoping things calm down a bit for you and for us,

Barbara

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((((((Hello Gail)))))

It is so good to see you! How nice. :D

Thank you so much for your hopes for a good result. We are looking for anything that will keep this nemesis at a stand still.

I will update on this.

Today, we went out to Rite Aide and we purchased the cream, lotion and body wash that were listed.

We checked and have Immodium in the "Medicine Drawer." We have one drawer, out of the way, that holds anything to do with side effects, and the like.

Hope all has been going well with you, dear Gail. I keep you in my thoughts and prayers.

Love,

Barbara

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Christine,

Thank you for your good thoughts and prayers. We are going to need lots of that going on for us.

Yes, the "war chest," we bought the large economy size of all.

The trick is to getting Bill to use it every day. Tomorrow, he will begin the entire daily routine to keep the skin lubricated, as Ned has advised.

Getting fully armed has kept our minds occupied, and reading all the material has given us a diversion from any useless negativity.

Here we go ... best feet forward for what we can do, and appreciating all the good vibes being sent to us.

:D

Barbara

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Wendy,

You are mentioning something that I told my daughter last night about visualizing her coumidin levels going higher, and allowing her to go home from the hospital. She was starting to become frustrated and sad.

That is what Bill and I will be doing regarding the Tarceva. It's a great reminder. I actually forgot about that for us.

We need to do what we tell her to do. In fact, today, I will tell let her know.

Thank you for that.

You have given us the push we need.

Barbara

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Barbara — I don't know why I didn't think of this before, but Sandra recently started a new group for Tarceva users and friends called the Well Lubricated Ball Cap Wearing Club:

http://lungevity.org/l_community/viewto ... lubricated

Bill is of course fully qualified for membership (I'm sure he has a ball cap lying around somewhere) and according to the bylaws I believe you meet the criteria too. Membership is free, but you must pay your own way to meetings, which are in my garage on Oahu (see photo in the link). Aloha,

Ned

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Ned,

That garage is just the place to meet. Of course, Bill has many more than one baseball cap. LOL

He qualified for the cap when he lost his hair in WBR. It has just grown back almost fully (sans top) and he has been coaxing it, grooming it, and deciding what style to wear. :D

Oops, here we go again. However, this time he can brag that he belongs to an exclusive club. 8)

Thanks for the link. That was so much fun to read.

Sandra,

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Barbara, I've been off the boards for awhile while visiting family but I refer to this site that I belong to all the time as well. People are surprised and frequently say "really?" when I say we are like family. I don't think people who haven't been where we've been and are truly understand.

I'm anxiously awaiting how Bill does since he's doing all the right things (thanks to you I'm sure) from the very beginning to deal with the side effects. You have the advantage of all these other people's experiences and are taking advantage of it. Bravo.

Judy in Key West

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You know, Judy, this has been my extended family. I was so glad that when I came home here last March, people greeted me with such a good feeling.

I am so grateful.

So far, Judy, Bill is on his sixth day and no signs of side effects. We took him off all the supplements he was taking prior to the treatment, and we are hoping that he will, at least, show something that will give us a positive clue.

Nary a pimple, not even fatigue, nor any bushy eyebrows or longer curling eyelashes are in sight - nothing.

I refuse to think negative, so I tell myself that maybe he is "unusual." To be honest, I thank the oncologist who told us that if this didn't pan out, he would put Bill on navelbine.

What is saving our resolve is his planning ahead.

Yes, this is family, Judy. You and I know that there aren't many venues for venting, talking, or thinking out loud, but here we can, and often do.

God bless everyone, and thank you, Judy for your thoughts. They have given me support.

Barbara

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Oops, spoke too soon, Judy. Bill just came upstairs to kiss me goodnight. (It was kind of early, says he's tired, and going to bed.)

There was a rash all over one check and top of nose. :lol:

I ran and got a mirror and showed him. He smiled broadly.

Don't know what that means, but it seems like an OK thing.

Barbara

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Hi Barb. Glad to hear the rash has appeared. It can come on really quickly and just keep on coming. So keep an eye on it and if it starts getting really bad (like mine was all over mh body and in my ears and in my nose and was really quite unbearable) let the oncologist know asap and get some antibiotics. I ended up going off Tarceva for 3 days and started the antibiotics. Later my dose was also reduced to 125. And the rash has never reappeared as badly as it did the first time...thing it kind of settles out for most. I seem to need to stay on the antibiotics though (doxycycline) to keep it under control. Continued best wishes

Sandra

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Thank you Sandra, for the forewarning.

We will keep an eye on it, and will let the oncologist know when/if it becomes a problem.

We wouldn't want it to get out of hand. As you have described, it would definitely be annyoing to Bill. As much as he knows the rash is a sign, he will be a very unhappy camper if he is bearing with it everywhere.

He already had dry skin, and this week of lathering with moisturizing lotion, I think, may have given him some extra help.

We will keep watchful.

Barbara

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I wanted to post this because I do not know what it means.

Bill had a large, bulging nodule on his lymph node on the left side of his neck. This was a problem before and disappeared during his Alimta infusions quite awhile back.

It is visibly shrinking once again. His neck is not showing "the bulge."

Neither of us knows what this means - perhaps, nothing.

We just wanted to report as we go along so that others may benefit from this. We will continue and let you know what may, or may not being important.

Love you all,

Barbara

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Bill had a large, bulging nodule on his lymph node on the left side of his neck. This was a problem before and disappeared during his Alimta infusions quite awhile back. It is visibly shrinking once again. His neck is not showing "the bulge."

That's interesting, Barb. Maybe Bill has his own personal barometer of how well a treatment is working, even if "the bulge" is of no concern in and of itself. My own personal barometer is the amount of extra calories I need to consume in order to maintain a steady weight (the fewer extra calories needed, the better). In each case so far it's correlated with the results of my next scan.

But then, I'm one who always tends to overanalyze stuff. Keeps my mind occupied, I guess. Aloha,

Ned

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Ned and Judy,

Yes, I am very interested in this occurrence. He had this happen once prior, when he was on the Alimta regimen.

He felt it and said, "This is going down." I can see that it has because it was a visible bulge. It no longer is visible.

I can feel it, but it has gone down quite a bit.

As having said before, we do not know what this means, but maybe we can keep this as a "sign," or not.

We'll keep observing.

Ned, you have noticed some signs for your personal evalutations. Keep that going.

Judy, we will keep this going. Who knows? It may help somebody, somewhere.

Love,

Barbara

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