SDianneB
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Posts posted by SDianneB
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Yay Charlie! I like that stable stuff, and improvement too? Wow!
This is good. No, this is great! Hang in there!
Di
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Yay! That's a great result, Addie! One thing the Radiation Oncologist told me right off the bat about reducing tumors with radiation is exactly what you just said -- that radiation doesn't just do it's thing in a day or a week like taking meds - it works over time. They were taking weekly sets of films and watching my lung tumor disappear a smidgen at a time over the duration of the 32 treatments I had. And remember too that we both waited a while after that stopped before having more scans and PCI? (And remember how antsy I was about getting on with the PCI? Ha!
)I'm so glad to hear this. If you're going to have to spend ANY time in one of those bleepin' masks, at least get a good result, huh!
Way to go!
Di
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Wow, Jim. This is GREAT news! I'm so glad they can really hit this with the big guns.
You take care, ok? My best wishes that this works, doesn't give you too many side effects, and kicks the rear end of all the nasty cancer cells!
Di
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When I went into the Cancer Center this morning for my bloodwork, they had a counter full of brochures and pink breast cancer pins. I asked if they had them coming for next month too -- the receptionist wanted to know why! So, of course I told her!
I will probably order some of the clear wrist bands and send them to the morning news crew that I think might give this some attention, and then to my own cancer center!
Admittedly, this center was formed to focus on breast cancer, but since they take on all kinds, and have patients from all over come there for their clinical trials, they could at least give some attention elsewhere, IMO.
Di
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This is one of those "Well, besides that, Mrs. Lincoln, how did you enjoy the play?" things, I guess.
Except for that, uh, cancer thing, I'm darn close to being "normal."
Had blood counts done today after the Topo last week, and except for the WBC count, everything was within normal range! WBC is *this close*!!
For those who don't know, I'm in a study for oral Topotecan. I take 5 mg. a day for 5 days (total of 25mg) then off 2 weeks, then another week of pills, off 2 weeks, then a scan. Am in cycle 7 & 8 now -- just finished #7, and will have off this week and next, then begin #8, 2 weeks off, then a scan. Whew.
This is SO much better than having to go in and sit with a needle in a vein or a port, and I'm tolerating this drug very well so far. I hope the FDA gets on it and gets this approved FAST so that others can take advantage of it.
Di
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I haven't had anything like that, but will keep you and your brother in my thoughts. Take care.
Di
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Sue, my best to the two of you as you continue this fight. The magic bullet is the two of you and your strength to continue this battle. "Maybe one day ..." and all that, but right now you have your hands full, huh.
Hope you find what works and that it works well.
Di
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Scan Results
in HOPE
YAY!!
This is the kind of news we like best!
Di
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Eppie, you and your dad are in my thoughts and prayers that the WBR zaps the mets quickly and thoroughly. Tell him to keep up with the kicking a$$!
Di (another native Texan transplanted to another state!)
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I think we probably all felt that way at first. This is still relatively new to your family, it sounds like. It took me a while to settle into the treatment, and I know for my friends & family, it was a really scary time as well.
You will often hear of this disease referred to as a roller coaster -- because of all the ups and downs, both physically and emotionally. There are some amazing caregivers in this forum who can share with you, and you may want to take some time and read through some of their posts in that forum.
One thing is for sure -- it definitely takes over your life, and figuring out how to make all that fit isn't always easy.
My best wishes to you.
Di
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I had chest radiation and chemo at the same time, and about the only side effects I had were the esophagitis, and my skin really dried out -- almost a burn, but not quite. I used a product called Aquaphor that they recommended, and it worked really well. The best thing though - and this was true on my face/head when I had PCI too - was A&D ointment! It was very soothing, and very gooey! It seemed to actually help with the healing more than the other items.
Just keep at it -- these tumors can be pesky to get rid of.
My best wishes to you.
Di
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Oh, man. I've been so fortunate the 2 times I've had to go to the ER to see really good docs. Even so, I keep copies of all my scans, reports, labs, etc., in a notebook, so when/if they need to get me to ER, they at least have that to refer to -- especially over a weekend.
Your mom is fortunate to have you all helping her through this. I agree that you should write to the hospital Administration and relate to them everything that happened. If you have a County Medical Society or something equivalent, copy them on it too.
My best to you all.
Di
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You know, Addie, that I will cringe for you tomorrow, just thinking of you in that MRI machine. ACK!
Hoping for fantastic results too -- can't wait to find out!
Di
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Mary, that feeling good is worth a lot, huh! Fortunately, I have few "bad" days, and as long as I feel good -- feel decent even -- it gives me the motivation to keep at this survival thing!
You hang in there, and continue to feel good!
Di
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Dontcha just wanna scream when those "spots" turn up? I sure did. But the important thing is that they were found, are small, and you're on top of them with treatment.
I hope the treatment goes well for you.
Di
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Fay, that's wonderful news! We had so many people come here from the hurricane areas -- it was so very sad. I'm glad your relatives are ok, even though I know their loss is devastating.
Di
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Yay! She's baaaaaaack! (Hide the chocolate!!!)
Di
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Sonic - salad with chicken, fried or grilled, and a BIG limeade - yummy!
Di
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Nina - I can't really say I've had a bad time with side effects from this oral Topo. I have fatigue, as usual, and like most people do from any kind of chemo, but I'm managing that fairly well. I take the pills for 5 days (5 mg. per day, total of 25 mg. over a 5 day period) and then have 2 weeks off, then 5 more days of pills, 2 weeks off. I just started cycle #7 of this.
My counts have held up amazingly well throughout, and once my gallbladder/bile duct problems were solved, I've had no more tummy problems. I have the occasional ache and pain, but I'm 52, so that's somewhat normal - ha!
Honestly, I think that if I had to take 2 more days of pills I wouldn't feel as good. This is because on day 5 (which falls on a Saturday) I'm at home from work, and I veg out all day. By Sunday, I'm starting to bounce back. By day 5, I think the fatigue begins to catch up with me. That, or I'm just lazy all day because it's Saturday and I'm off work!
About the only odd thing I've noticed is that when I'm taking the pills and for a few days after, I'm a little burpy. Other than that, nothing to speak of.
I'm not taking any other medications, so if I have any strange side effects, we know it's from the Topo.
I know many people have real problems from Topo, but I'm apparently not one of them. At least not so far. I'll have another cycle after this one, #8, and then another scan to check progress. The Oncologist says that as long as I tolerate the Topo well, and it continues to work, we'll just stick with it. I'm for it!
Di
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I didn't really have throat irritation, but did have esophagitis and some irritation there caused by the chest radiation. They suggested that I sip on Maalox, and I did, but found that popsicles were really wonderful! I liked the cold, and the flavor (strawberry, banana, grape)wasn't harsh and didn't irritate my esophagus going down. They are also a good source of fluids and you need more of those during radiation therapy, I'm told.
Some of the others here will have suggestions as well -- the best thing is finding something that works, and stick with it!
Di
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LOL, Fay! The last time I had an ERCP procedure (to put in the permanent stent in my bile duct) there was a room full of extraneous people! The hospital had just bought a new x-ray unit (fluoroscopy) and a team of people from the manufacturer stay with it for a while to help get the room set up and the machine calibrated correctly.
I worked in a Radiology department many years ago, and this was the case then. It's probably more common than you'd think.
Di
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Joyce, I'm so sorry for what you and Steve are going through. I detest this disease.
I believe that for each of us who gets this disease, and lives to tell about our experiences with it, there are at least a dozen who benefit. So, a special thanks to you for sharing your experience.
I will keep you both in my thoughts and prayers. Take care.
Di
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Had my Oncologist visit yesterday after another 2 rounds of Topo had been completed, and to get the results of the CT scan I had last Friday. I'm good to go!
She says I'm their "star pupil" in the oral Topo study I'm in! I'm happy to oblige, believe me!
Lab values are good - almost normal, amazingly enough. The only really low one was the WBC, and it was only a tad below the bottom "normal" range.
As to the scan, of what was there, it's either the same, decreased, or gone! And, the biggie - nothing new! YAY! This is always my main worry -- that they will see new things pop up, but so far, the Topo seems to be holding things at bay.
The doc says that since I'm tolerating this so well, we're going to stick with it, 2 cycles at a time, then scan, exam, etc. My gallbladder was a little distended, so that may mean another stone has formed and is trying to block the duct, but that's easily repaired if that's the case, so will just watch that over the next week or so, and check lab values next Tuesday.
All in all, she gave me another "A+" exam. I was very much relieved, because I kept wondering how long the Topo would be effective, was new spread going to begin to show up, and all that stuff. So far, so good.
The reality is that this disease more than likely will get ahead of me, but for now, I'm happy to be on target with my original goal -- to maximize my survival. I still feel good, all things considered, have continued to work FT the entire time since I was diagnosed with the exception of some time off for ERCPs x 2, and a day here and there.
Life is good.
Di
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Tough question - thought provoking!
I guess I was much like others, in that I started searching everywhere to find out about other people who had SCLC. The first Oncologist I had didn't give me more than about 8 months to live, and here I am, 16 months later, still fighting to try and stay ahead of it, but feeling pretty darn good, all things considered.
At the time though, I just wasn't going to accept Dr. Gloom & Doom and his predictions, so once I started learning about this disease, I dumped the old stereotypes and I dumped him. I came across this forum not too long after I was diagnosed, and enjoyed reading the posts. Soon, I chimed in, and the rest is history.
The simple answer, and the one that (if you think about it) makes the most sense is this: I'm here because I want to be.
Di
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Smoking in Italy
in GENERAL
Posted
We noticed that same thing here in downtown Nashville this past spring, and figured we see more on the streets because they are being run out of buildings to smoke! Maybe there are more taking up the habit, but some of the buildings down here that had smoking areas no longer have them, so the people go outside. One of the local stations did a story about state employees spending a lot of time outside, off the job, on "smoking breaks."
If you're in or around Oregon, you'll know that your state now allows public sex acts in bars. You can't smoke in them, but you can, uh, you know ...
What a country!
Di