concerned daughter in FL

I'm so sorry to hear this, and I'm praying for you and your family.

yesterday, at about noon. My mom was a most remarkable woman, and I still can't imagine how I'm going to live life without her. Our newspaper had this story in today's paper about her. I was dreading it...figuring the typical headline would be something like "...Loses Her Battle With Cancer", but lo and behold they suprised us and it was the most perfect and uplifting thing they could have printed. http://tampatrib.com/FloridaMetro/MGB6TENVX8E.html I know I took more than I gave, from this forum. I want to thank everyone who helped me with questions, or just offered support, and I hope to find a way to be a more of a giver here in the future. I may not have posted much, but I read a lot, and I am praying for each and every one of you.

Look under LC News at the latest clinical trial for the vaccine for SCLC.

*********************

Betty, I am so sorry to hear your news. I am praying for you on your journey.

I'm praying for you mom!

I'm sorry I keep asking questions when I'm not on here enough to offer anyone else support. My mom's condition seems to be deteriorating rapidly and it limits my computer time. She had her CT scan yesterday and the results were very bad. The cancer is growing extremely fast in her liver. She also has a lymph node that is affected and in addition to her spine, now her hip may be affected too....she's developed a lot of pain in that area just in the last 48 hours, so they are going to do another MRI on Monday to see if they need to radiate that area in addition to her spine. The doctor was grim and very frank. Said based on the speed of the growth in her liver, she will begin experiencing extreme problems there within a few weeks. He still wants her to try a dose of Taxol, on Monday, to see if the vacine (clinical trial) she had will have a positive result. He wasn't very encouraging this time....the positive results they had been seeing from the vacine are declining rapidly as they get more patients into the trial. He mentioned that one of the side effects of Taxol is neuropathy. The Taxol website says "this is often a side effect". Does anyone have more information, as far as what the likilihood is, and how much it affects one's quality of life?

That makes sense, to wait and see. And Cindy, thanks for the reminder about not stopping the dosage without the Dr.'s consent. I remember now about having to "wean" off of it, and I'll remind my mom that she'll need to do that, even if the side effects get bad.

Hi ya'll. My mom's been in quite a bit of pain lately and we finally convinced her to call the doctor. She had an MRI this morning that confirmed a met in her spine that is pressing against a nerve. The doctor started her on Decadron, with the first dosage going through her port today. She'll also have radiation (14 treatments) beginning tomorrow. She was on Decadron right after her initial diagnosis (for her brain mets) and I compared the prescriptions when we got home. Initially, she took 2 mg 2x daily. This current prescription is for 4 mg 3x daily. Does that sound like a lot?? My mom was climbing the walls when she was on this medication before - it was really awful!!! I'm wondering if she should say something to the doctor or if this sounds standard. I sure don't want her to be in pain, but I also remember how bad the side effects were from the Decadron.

Good news that he's home and feeling better!

This is another good site: www.headcovers.com

During the nadir period after chemo, there were some things the doctor told my mother to avoid. I remember she had a little pamphlet that he gave her. The specific things I remember were moldy cheeses and to make sure any proteins (chicken, eggs, etc.) were thoroughly cooked.

I sent you a PM!

my mom's RFA was scheduled for yesterday morning, but when they got her hooked up to the CT scan, they discovered several more lesions on her liver, so they had to cancel it. She is still enrolled in a clincal trial - a vacine/gene therapy thing. But she can't have any more chemo until after she's had the three vacine doses. The first one is scheduled for Friday and then she'll have the other 2 at two week intervals. That will be followed by Taxol as a second line chemo. This means 6 weeks before she has anything that will keep the cancer at bay. I'm SO uneasy with that. But the doctor says they've had extraordinary results in increasing the effectiveness of the second line chemo in patients who do the vacine first. And that they can't be given concurrently. Any thoughts? And any information/experience on the Taxol? Thanks.

My mom just had it a few weeks ago. She had a very bad bout with it, about 7-8 years ago, and I think the virus stays dormant in your system. She just happened to mention the very small rash on day when she was having radiation....the doc took one look at it, and put her on the meds, I think it was the same one your mom has been prescribed. That was over a week ago, and the rash (and the pain) have totally cleared up. And she's been feeling better generally too. I think the virus may have flared up quite some time ago, before the rash appeared. Hopefully your mom has caught it in time and the meds will knock it out quickly!

Hang in there, Mouse!

You and your family continue to be in my prayers!

Karen, I don't have any answers for you question, but I did read your other post (in the general forum) about Dave's liver met, and the possibility of doing RFA. My mom also has a liver met, quite close to the surface and her onc and the liver specialist have agreed that she should try RFA. Initially, there was some discussion about her lesion being TOO close to the surface (not sure why, but there needs to be enough "margin" to work with). The docs conferred, and just agreed today to give it a go. Now they're having trouble finding space and time to schedule it...the first available appointment isn't for almost a month, but mom's onc. is trying to giggle things and have it done sooner, maybe next week. We don't know much about the procedure, but thought I'd mention it here, and I'll share whatever I learn, along the way. The liver guy indicated they don't have much experience with RFA on metastized SCLC to the liver, so he couldn't give her any stats on success rates. I'm just happy that they can try this procedure....it sounds like the side effects are minimal, and as long as the fight can continue, we're gonna fight. Prayers being said for David, and you...

I'm so sorry to hear about the loss of your precious sister.

What wonderful news!! I love the story about the caring nurses! Hope your mother is back to playing golf very soon!

You are in my prayers, Betty! Hoping that you feel better soon and that this chemo does the trick!

Thanks for sharing your story! It's so full of hope!

Marge, I noticed from one of your other posts, that you and my mother are about the same age and were diagnosed near the same time. I'm glad that you've also had a positive response to your treatment. It does seem like the risks to the ablation are almost non-existent! That's a nice change of pace! Jen, I can't wait to tell my mother that your hearing did eventually get somewhat better. I know that will perk her up!

Thanks, Jen. That is great to know! I'm SO hoping that it turns out to be something like that. I've read some of your posts about your hearing problems. My mom is having similar issues and it's been very difficult for her. Have you looked into a hearing aid? My mom is seeing a hearing doctor who said he will prescribe one as soon as it stablizes, but it shows no signs of doing that yet. I told her I thought she ought to get one now (and her onco on Friday suggested the same thing), even if it's obsolete in a few months and she has to get a new one.

about the met to her liver. Her doctor has always had some question about whether there are actually liver mets. In November, after her 2nd chemo treatment, he was suprised to see the spots still there, given that the lung tumor and brain mets had been significantly reduced. He was thinking that perhaps the spot(s) were not cancer after all. Then, after the 3rd round of chemo, the scans showed all signs of cancer were gone, in all three places (lung, brain, liver). Now, we're back where we were in November, with her latest CT scan on Friday showing a spot(s) on the liver. The doc said he took all the scans and went to the better (?) machine to read them, and that it's clear to him now that they never resolved, but show up on all the previous scans. So now, he wants to do a liver biopsy. If it's something benign, that would obviously be terrific news. If it is cancer, he wants to treat it with radiofrequency ablation. Says the spot(s) are very accessible. We're still not sure what to make of all of this. I'm hanging on to the potential for really good news. I know these CT scans are not like looking at a photograph, but how often does this happen? And is anyone familiar with the radiofrequency ablation? It seems to have very few, if any, risks or side effects.