teriw
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Posts posted by teriw
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Hi Jen,
GREAT news about your Dad! Yippee! I'm so happy for your family.
I'll take this opportunity to say thank you to you for the encouragement and information you've provided to me since I've been on the board.
Wishing your dad continued FANTASTIC health!
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Hi Katie,
I took your suggestion and posed some questions to Dr. West on his Onctalk website. He was kind enough to answer (very quickly, I might add). Here's a link to my question and his response:
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Hi everyone,
I just took a trip to our local health food store in search of mushroom extract for the purpose of restoring white blood cell counts and boosting immunity.
I talked to the sales guy about my husband's current diagnoses and what I was looking for. He showed me a couple things, but enthusiastically suggested a product called Cell Forte MAX3, which is IP-6 and Inositol, plus Maitake extract and Cat's Claw. Has anyone used this? It says to take 2 capsules a day for maintenance, but that you can take up to 16 a day if you need extra support.
I have done some web searches and it seems that IP-6 and Inositol is a hot topic of study in regards to cancer.
I guess I have a couple questions. Any idea if what I bought is as good as, better than, or worse than a standard 3 mushroom complex? (Or should we use both?). And has anyone been told anything about using this complex while receiving chemotherapy? If you've used it during chemo, how much did you take?
Our onc is fairly "old school" and it's not the type of place that offers much in the way of nutritional information (although they have other good points!). I'm fairly knowledgeable when it comes to nutrition, but when we start talking supplements, I have a lot to learn and like everyone, not enough time to become an expert overnight.
Thanks for any info!
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Hi everyone,
I've got the okay from Bill's onc to use some supplements. I've read that a lot of people use probiotics. I'm not sure exactly what they are -- is there a specific brand name to look for? Or a specific type anyone particularly recommends?
Also, I've read about people using a mushroom complex to aid in the production of white blood cells. Same question -- is it a particular complex I should look for?
I'm planning to take a trip to a health food store tomorrow where the people actually know what they're talking about. I'm sure I can get some info there, but thought I'd check with all of you experts here first!
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Hi everyone,
I've got the okay from Bill's onc to use some supplements. I've read that a lot of people use probiotics. I'm not sure exactly what they are -- is there a specific brand name to look for? Or a specific type anyone particularly recommends?
Also, I've read about people using a mushroom complex to aid in the production of white blood cells. Same question -- is it a particular complex I should look for?
I'm planning to take a trip to a health food store tomorrow where the people actually know what they're talking about. I'm sure I can get some info there, but thought I'd check with all of you experts here first!
Thanks in advance. I'll post this in the nutrition section too.
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I don't have a lot of advice to give, but I do appreciate the situation where the patient and the spouse aren't in total sync on how to handle things. I too am in the first couple months of dealing with this and even being able to fully accept it.
For us, the best way has been to have lots of conversations about how we each feel -- being totally honest, and really trying to get where each other is coming from. That was hard for me at first, because in my thought process, how could my husband not want to get 2nd and 3rd opinions?! I didn't get it. We're now still discussing things a lot and making some compromises on how we move forward, and sometimes it's really frustrating for both of us, but mostly we understand and work it out where we're both okay with the choices.
It's important that he understand how you're feeling and why you believe what you do. It's also crucial for him to feel comfortable with the medical choices and to feel some sense of control. It's a hard balance, and one that must be especially difficult to reach while he's feeling so bad physically.
My thoughts are with you -- hang in there,
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Hi Don,
Your posting was the first one I read on this site when I did an initial search for information (more specifically, for survivors). It was so inspiring. I printed it and showed it to my husband (who had just been diagnosed), and I reference it often.
I realized that I never posted a "thank you." I think you've helped an awful lot of people, probably more than you realize.
So happy for you that you're beating this monster!
God bless,
Teri
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Hi Gerald,
I'm sorry to hear of your diagnosis, but glad you found this site. I'm fairly new to it too, and have found it to not only be a great comfort, but a solid source of experience and useful information. There is a lot of hope here!
The treatment you describe is the same as my husband is currently undergoing.
Teri
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Hi Kevin,
I just want to encourage you not to let your doc brush off your symptoms. It took three visits for our primary care physician to give Bill a lung x-ray, even though she knew he was a long-term smoker. When we told the radio-onc this, he was amazed.
Insist on a chest x-ray. I'm no expert, and it may be that a CT scan is needed for early detection. But insist on not waiting.
Hoping for the best for you.
Teri
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Thanks Katie! And Happy Thanksgiving to you!!!
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Thanks to everyone for their great weight-gaining suggestions. Bill is holding steady -- a few pounds up, a few pounds down. But not dipping below a certain point.
We definitely notice that on days when the attitude is at its highest, so is the appetite. So, that's an important consideration.
We also talked to the doc about the concern of using too much Boost or those types of things. He definitely said that nourishing the body has to come first, so it's chalky milkshakes from now on! It does make sense. Drinking Boost is really just like eating extra food, right?
Happy Thanksgiving to everyone...
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Thanks everyone for the information. Yes, I read about a study conducted in Japan using Irinotecan. I think they used higher dosages than we do here, so they had a slightly different outcome in their study than we did here.
We had a talk with our doc yesterday and now feel confident in our treatment plan. He also explained that because Bill won't be getting the radiation up front, he will be able to tolerate higher doses of the carboplatin/etoposide.
Thanks again to everyone!
Happy Thanksgiving!
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Thank you for the information.
Mary, the article was helpful -- thank you for taking the time to find it and paste it in. My best wishes for your husband. The weight thing is difficult. My husband is struggling with that too, although we seem to have him staying around the same weight, but he really should gain about 8 or 10 pounds.
Sheri, thank you for the information you shared also. This definitely helps. Thanks for your thoughts -- I hope your dad has another remission soon too.
There's so much to learn -- it's like we're supposed to become experts over night. Every time I learn something new, I have 100 more questions!
Teri
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I'm wondering if anyone can shed some insight on something I recently read.
In a book I received from the Lung Cancer Alliance ("101 Questions and Answers about Lung Cancer" updatd 2006), it says that for extensive sclc, the standard front-line treatment has been carboplatin or cisplatin with etoposide. But that recently, there is thought that cisplatin with irinotecan might be better. The book does say that those results are somewhat preliminary.
Has anyone had this new treatment or learned anything about it? My hubby is about to start his second cycle of carboplatin/etoposide tomorrow. I'm still in that "is he really getting the best there is" place, and seeking any information I can get to question the docs about.
Thanks for listening,
Teri
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Hi Farrah,
I'm so sorry to hear about your dad. You found a great web site here with fantastic people.
My husband also was recently diagnosed with sclc. At first it was thought to be contained in the chest area. With that diagnoses, the treatment was to be carboplatin/etoposide for 3 days (like your dad), then during the second cycle adding aggressive radiation (2x a day -- not sure how many days). When it was discovered that the cancer had spread outside of the chest area, the game plan changed. Do the 6 cycles of chemo, then go back for radiation (including the brain).
I think also the idea with the aggressive radiation is to stop it spreading outside of the chest. Once it has, I think the primary concern is getting the chemo throughout the body. Then using the radiation to get what's left. That's my understanding, anyway.
I completely understand the panic about having the right treatment. I'm still nervous and unsure about it and am constantly researching.
You can get some useful printed information for free from www.lungcancerallieance.org. I just received mine in the mail yesterday.
Prayers and thoughts your way,
Teri
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Thanks to everyone for their suggestions and encouragement -- they're all great.
I bought some meal replacement powder and some Boost. I always add some meal replacement power to the morning smoothies I make.
My husband has an idea that drinking too many of the meal replacement type drinks (Boost, etc.) will give his body too many vitamins, which could give the cancer "energy," so to speak. Does anyone share this concern, or have they researched this at all? I would think that would apply only to taking mega-doses of supplements and that drinking meal replacements is really just like eating extra food, but I don't know that for sure. He has the same concern with weight gain powders.
Teri
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Thank you, Pammie. I will definitely look into this. Glad to hear your dad is doing so well!
Teri
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Thank you all so much for your welcome. I already feel the support, and it's amazing.
Mary, thank you for taking the time to share about your husband. I'm so sorry for what happened. It says a lot about you that you're here on this site trying to lend support and caring to other people. What a blessing you are.
My thoughts and prayers are with you all,
Teri
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I can't thank you enough for your encouragement, advice, and for sharing your very personal stories. I hope to be able to return the same.
It's been great to share all of your positive stories with Bill. Sometimes half the battle is keeping the positive outlook going. Of course, it's an uphill battle, but we all have to believe it can be beaten -- I do believe.
Debbie, reading the details of your hubby's ordeal and how he's come through was just amazing. I'm so happy for you both!
Nancy, you're an inspiration to say the least. Thank you so much for your offer of support. I would like to offer the same back. Stay strong.
Teri
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Thanks again for all your replies. I will fill in a profile soon. I realize I made an error in my earlier post (actually, I think I made it twice -- werid). My husband is actually 54 -- it's me whose 44.
I'm very happy to have found you all.
Teri
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Wow! Thanks for everyone for your replies! What a great community. Yes, I will certainly keep you all posted!
Teri
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Hi Jen,
Thank you for your encouraging note. The more I think about it, the more "eat whatever you can" sounds like the best course of action.
Looks like your dad has had basically the same treatment plan as my husband is just beginning.
I'm so happy he's had the great news!
Teri
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Hi Everyone,
Thank you so much for your fantastic attitudes. My husband (44 years old) was diagnosed with sclc about six weeks ago (10/06). It has travelled outside of the lung area. He's had his first cycle of chemo for three days in a row(carboplatin/etoposide), and will start the next in another week or so. We are both remaining positive and feel it can be beaten, but of course, it's all so new and frightening.
While we wait to see how the cancer responds, the biggest challenge is keeping the weight on him. He's been fortunate not to be sick from the chemo, although he's very tired. He's a super picky eater in the best of times, so this is quite a challenge. Does anyone have any advice for fattening up a picky eater?
Also, I've read about using digestive enzymes -- is anyone doing this? And did anyone use a nutritionist that specialized in cancer patients? I'm just thinking I'll seek one out -- we're in the Los Angeles area (San Fernando Valley), if anyone has any names to share.
Thanks!
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My husband (a young 44 years old) was diagnosed with sclc about 6 weeks ago (10/06). Two trips to the primary care doctor with wheezing and a tight feeling in the chest. Finally, an x-ray on the third visit. He's had his first week of chemo (carboplatin/etoposide) for three days in a row. Will start another shortly. We've been told that radiation will occur after the chemo cycles. I'm here seeking support and useful information. I LOVE the attitude of the survivors and loved ones on this site. Thanks for being here!
my husband has lc and bone
in INTRODUCE YOURSELF!
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Paulette & Shane,
I'm so very sorry for your loss. I've just read your posts for the first time. It's absolutely heartbreaking. My prayers and thoughts are with you and your family.