teriw

Missed it, but better late than never...

Tanner, I can so relate -- I'm so sorry for what you're both going through. I know how stressful and frightening test times are, and when she's feeling so poorly it's all the worse. We've been going through that too. What I have learned here (among other things) is that things can turn around when you least expect them to. I pray that's the case for your wife. One day at a time... Hugs,

I feel the need to clarify that the doctor didn't suggest that this was a "new" treatment plan on the horizon. Just that he's using it successfully on one sclc patient as a 3rd line, and that it's worth considering after Topotecan no longer works (if there is no clinical trial that offers more promise). I posted it so that people could ask their doctors about it, if appropriate. I don't want to risk misinforming here -- it's too critical.

Always thinking ahead... Wondering if anyone out there has tried Sorafenib as a 3rd line for SCLC. It's indicated for use for advanced renal cell cancer, but apparently has extended uses outside of its approved indications. I had occasion to speak with a researcher/lung cancer specialist from UCLA (I attended a lecture). Seizing the opportunity, I told him about Bill and his current treatment. He mentioned to me that he has one patient who is doing excellent on this drug, Sorafenib for a 3rd line. He reiterated that this is ONE patient, and also advised that Bill should stay on Topotecan for as long as it works. I know I'm always wanting a "what's next" in my back pocket, so I thought I'd share that and see what anyone else knows too.

Sherry, I'm sorry you have this dreadful disease, but I'm glad you found this board -- for yourself and for others here. Just by your user name, I can tell you're a fighter! And with that attitude, it's no surprise you have a wealth of friends! Looking forward to reading more...

GREAT NEWS!!!!

Hi Dana, Welcome to the board. You'll continue to find lots of hope and support here. There are amazing survivors who know what your mom is going through, and loved ones who can help you too. Wishing the best for your mom.

Hi Leslie, Just want to say "welcome" and tell you that you have found the best place for hope, support, and solid information. There IS hope. Keep strong for your dad.

Yes, he's always checked. He gets regular Procrit shots (got one yesterday). He's been having Neupogen shots after each cycle. Amazingly, the office manager at my doctor's office managed to get them to approve Neulasta just this once to see how he does on it. And his platelets are always good.

Thanks everyone. Unfortunately, I didn't get a chance to read most of your notes until we returned. Doc ordered additional pre-meds for the nausea and added the steroid, which they hadn't been doing this round. He was very dehydrated on Monday when he started, so they hydrated him every day this week, except today because he actually felt like perhaps it was too much. He's a bit better now. He's actually sitting at the computer writing, and he did eat a bit for lunch and finished a boost shake. Of course with all the lying around in one position, his back has gone out! Is there no end to it??? Tell me, how does one know that they need a blood transfusion? Is it something they check when they check the blood counts, or is it more that you show up sick? They always check his blood. And on Monday they took a few viles of it. Also, is the sodium level something that is typically checked, or only when a symptom suggests a problem? He is scheduled to have an MRI of the whole chest and spine area. I'll update again when I have some news. Hugs to you all... P.S. Yes, Mary Colleen, that's our Mrs. Dickens. And yes, she's that tall!

I wasn't even going to post this, because I'm not sure if anyone can provide any info (it's going to sound a bit vague). Bill's just been feeling really bad for a couple weeks, apart from a couple days where he perked up. He just started on chemo again this week, so I can't blame it all on that. Although the chemo itself is making him nauseous during and just after) despite the pre-meds. He's having a hard time describing it. Sort of flu-like, but worse. Sleeping a lot. Weak and unable to eat a lot. No vomiting, but coughing up the blood this week and last (which our doctor doesn't seem to think is anything to worry about since he did the CT scan the one time we showed a lot of concern about it -- we're not so sure). Sometimes he'll perk up in the morning for a couple hours, but then feel bad again by the afternoon and not really move off the couch (treatment is in the morning each day). I'll just add that he's one of those people who has an extremely high tolerance for pain and doesn't complain about physical problems, so when he says he's sick, he's sick. I don't know if it's actually the cancer making him feel like this, or if some of it's the chemo, or something else that needs to be addressed. The symptoms aren't always the same. I feel awful because he hasn't had a "good" day where he had some energy in probably 3 weeks. We go for treatment again today, and we'll of course tell the doc how he's feeling. They've been giving him extra hydration each visit, which has helped. I guess I'm writing because I'm not sure what to be concerned about or what specifically I should be asking the doctor (or isn't that the doc's job?). Sorry if I rambled today...

Connie, 12 years is just amazing. I'm sorry to hear there's a new bump in the road. I'm sure it's not at all what you were expecting. Hoping it just sits there or goes away. Thanks for being such an inspiration and support to everyone here all of the time. Not just for sharing your own story, but for taking the time to share the stories of your friends (like your long-term sclc friends) that you think might prop someone else up. It's invaluable.

Hi Aaron, I was happy to see your update too. Even those of us who don't regularly post in your topics are always looking to see how you're doing. Enjoy that "week 2" to its fullest!

Hi Laurie, I'm sorry you guys are going through this. Wishing my best that it's a swollen lymph node and nothing more than that. I hate sclc too. Hugs,

Thanks everyone. I was *talking* to Bobby earlier about this. It's not that I think there's truly a magic cure out there for sale online, but it makes sense that something might help as adjunct therapy. Every time I hear of something that sounds promising, I'm curious if anyone has tried it. I read about it yesterday -- I didn't think I was reading an advertisement. But thinking about it now, maybe it actually was a cleverly disguised ad and I didn't have my discerning filter on. Thanks Melinda about the hyperthermia info too.

Beth, I'm so sorry for what your mom and your family are going through. It is absolutely heartbreaking. I hope they're able to ease the pain.

Great idea, Ernie. I look forward to seeing the list.

Thought I'd post a link to this article that came in the CancerCompass newsletter. The title speaks for itself, "Nutritional Supplements Safe And Beneficial For Patients Undergoing Chemotherapy And Radiation Therapy." http://www.cancercompass.com/cancer-new ... 1003:5:1:2

Anyone using Cellular Zeolite (or the powder form)? If so, I'd love to hear from you. I suspect if someone had a great response, they would have posted, but I'm checking anyway. Anyone know of any reason NOT to use it?

Bring everyone a personal bottle of Purell! (Along with the face masks.) And have your sis use it during the visit too. And enjoy!

Mary Colleen, I'm so angry reading your post. There's no reason why you and your husband should have been subjected to those words put in such a manner. I can only imagine how your hubby (and yourself) must feel. Definitely praying for you today... Love,

I was amazed when I heard that Tarceva was not available to NHS patients. I'm sure that you all in the U.K. know this site, but here it is anyway. There is a petition to sign (once on the site, it's in the left column): http://www.roycastle.org/

MC, I'm so sorry -- I just saw your post. This is very frightening news I'm sure, and I know it must have been such a shock to all of you. But you must not forget that there are a lot of people on here who have had brain mets successfully treated. I will be praying for your hubby for 100% successful treatment, and for your family that your anxiety be eased. Please keep us updated on the other scans. Much love,

I don't have any experience with this. I just wanted to give my support and I really hope it's something else going on. To just finish up a treatment, then find something is very frustrating, to say the least. I hope the best for your mom. (And congrats on the beautiful baby!)

Hi Loretta, I'm sorry your husband is dealing with all of those symptoms. My hubby has had shortness of breath, but it's been in cycles. It was always explained away as the tumor causing it. Our radiation onc did explain that they sometimes do radiation just for the purpose of relieving those types of symptoms (I guess caused by the tumor pressing on something). I hope he can get is sorted out.