cat127
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Posts posted by cat127
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I'm so sorry to read this Lisa. I'm sure he felt equally blessed and proud to have you for a daughter.
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The 'bluedevils' in your name makes me wonder if you are from Western PA. If so, and you'd like a second opinion, I can HIGHLY recommend my sister's doctor at AGH, who specializes in lung cancer. Just tossing that out there.
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I'm sorry to read this NED but can't help think that those brain mets don't know who they are fighting with! Hoping like Randy that the WBR kills any cancer cells deader than dead.
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EIGHT YEARS - there are not words to describe how awesome those two words are! Congrats!!!!
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Esophagitis is pretty common when they are irradiating the mediastinum- the middle of the chest so therefore right over the esophagus. As others have said, mention it to the doctor. They can write for 'magic mouthwash' (sometimes also called magic swizzle). It has a number of different recipes to it but usually contains benadryl, immodium or kaopectate, and lidocaine. I used it myself once for a laryngeal inflammation that was very painful. It really numbs everything. Dietary changes can help a lot too. The radiation oncologist should be able to give your mom a lot of good advice once he knows of the problem. Good luck, and this too shall pass once the radiation is done.
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Bikes do have a way of doing that! I had a Kona follow me home this year!
Great looking bike, may you have many wonderful miles together!
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Very cool! I know some folks from a cycling message board that did that ride too.
And I know all too well the "started out too fast" concept.
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Just to clarify - Megace - generic name megestrol, is a steroid. Marinol, generic name dronabinol, is a synthetic version of delta-9 THC, which is an active component of marijuana. Marinol was approved for use in the US by the FDA in 1985 actually. No idea about Canada (more accurately, don't know where to check for that like I do for the FDA).
I once helped compile an annotated bibliography on marijuana research papers. It was a long time ago and at the time I remember reading that the pill form was not as effective at stimulating appetite as the naturally-occurring form. I don't remember anything about the nausea aspect though.
Hopefully some folks on here who took Marinol will add some comments and give you good information.
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I don't think you are wrong at all. Everyone needs to do what works best for them - that's my opinion.
My brothers call me "cemetery people", as I like to go to my parent's grave and just sit and talk to them. My brothers say they don't like to go and they feel my folks around them anywhere. We're just different, no one is wrong or right.
That first anniversary is tough. Do what works best for each of you and just hang on and muddle through it. That's all we can ask of ourselves, I think.
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Greetings from le Tour.
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Barbara - I'm so sorry you are having to deal with this right now.
"not previously imaged" just means that it hasn't been described before on any image you've had. Now maybe that could mean that a previous scan didn't even include that area, but I think it more likely means that the previous scans didn't see this.
1-2 mm is very small. It isn't likely they would do a PET as even in a cancer that small, the likelihood of enough active cells being detected by an increased SUV is very small. Something that size they would likely schedule you for follow up CTs over the next couple years, and if it doesn't change, then it is something benign. And I do believe that statistically speaking, the odds are great that it is something benign. But I can totally understand your worries.
I hope your doctor on Monday tells you that this is nothing to worry about and come on back in 6 months for another CT to confirm that.
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sorry that I haven't been good at updating here. Saturday will be month 37 since Kelly's diagnosis. She had a scan last Friday and I got the report today. The tumor doesn't show any uptake on the PET and nothing new, other than the remaining tonsil lighting up but she's also sick so I think it is just a tonsil being a tonsil. She gets 6 months off until the next scan and her Dr said if it is like the last 5 or 6, he's moving her to yearly scans!
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You should be able to see in my signature that my sister did Cyberknife for the tumor that remained after first line chemo/radiation that sterilized the nodes but left behind some active tumor. She weathered it like a champ and the only real issue was lying down on the table for the time it took. (back pain and some post nasal drip that was more annoying when lying down)
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Lyrica worked like a dream on some pain my sister had. Fingers crossed that he has the same kind of luck!
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Sorry about the termites - but I must say that you and Rosie look like it won't be such a hardship to hang out at a hotel by the beach! Enjoy!
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Oh Barbara, I am so sorry to read this. You have both been so courageous through this horrible battle. And you have both been an inspiration to so many of us here. Thoughts and prayers to you and your family in this difficult time.
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You father would be so tremendously proud of you for taking something so horrible and turning it into something so wonderful for the entire lung cancer community!
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I've got tons of good vibes, positive thoughts, and prayers coming your way. I can only imagine how hectic and worrisome this has all been for you. Do not ever call your worries small potatoes. We all wish that each of us are worry free. Any worries are worries we want to help with.
Now, time to stop typing so I can recross my fingers for you.
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I waited a bit to post here because of an odd finding that Kelly had in the last 3 scans - April, August and December - her right tonsil kept lighting up her PET scan. Although the odds were in our favor that this was not (1) a met from the lung or (2) lymphoma or (3) head and neck cancer - no one was really comfortable doing nothing. In April and August, the ENT examined her and said he just saw nothing that worried him. But at an appointment in late Oct or early Nov, he asked her - if this turns out to be 'something', would you treat it? She said to him - I've done everything I possibly can to beat this, why would I stop now? So they set a date for January to take the tonsil out.
She was hoping the December scan would show it doing nothing, but no such luck. So the tonsillectomy was a go. She laughs when she says - how often do you have a doctor use the phrase "excruciating pain" when telling you what to expect.
The main reason this is in the 'good news' folder is, that the reason everyone was determined to remove the tonsil is, that for all three of those scans, absolutely no measurable uptake was seen where the tumor is. You can see it on the CT, but not on the PET. In December, her doctor told her to wait 6 months before the next scan. Then he looked at me and said "next December, we're going to yearly scans."
So - tonsillectomy was last week and although she never felt 'excruciating pain', she is hurting. But on Friday at her follow-up with the ENT, she was told that the path report came back negative. I said - well I guess sometimes a tonsil is just a tonsil.
Now she's making a plan to get back on her stationary bike to get her legs ready for the 5K at this August's Philly Livestrong Challenge.
My sister - she still amazes me!
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Yeah, apparently a "non" was left out of that press release. Which may not seem like a big deal to those not in the lung cancer community, but we know what a difference it does make.
I was looking at Kelly's latest scan reports and she heard me give a little "HA" sort of sound. She looked at me and I noted that the one report listed her as having small cell. Those 3 little letters have a habit of going missing it seems.
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No prob Neil. I knew you knew, and I'm sure lots here did too. Just wanted to make sure for the folks just starting out on this journey and learning so very much in such a short time.
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Just to further clarify - it was NOT rejected by the FDA. The FDA never released any decision prior to this announcement. It was rejected by their advisory committee, which is not the same as being rejected by the FDA. The FDA is not bound by the decisions of the advisory committee (though as the media often tells us, they don't usually go against the advisory committees) and the advisory committees do not make any regulatory decisions.
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Hey, I have those socks too!
Congrats on your milestone and may there be many many many more. Your bike riding mileage always inspires me! -
I'm so very very sorry to read this. I can say that my niece was widowed at the age of 32 and I think it has an added layer of grief that others can't relate to. I encouraged her to seek out a support group of not just widows, but young widows. Perhaps you, in time, can do the same. Until then, I'm so sorry for your loss and will keep you and yours in my thoughts and prayers.
shots for low blood count - Dr. visit required?
in SCLC GROUP
Posted
I think what happens is that different insurers, including medicare, have different levels of decreased WBCs or RBCs at which they will cover the cost of the shots that will raise those cell counts back up. I remember at one point with Kelly's RBC count the nurse actually said - do you have (insert whatever insurer)? Then said, oh good, they will pay for the epogen if your levels are 12 or below, but medicare will only do if it is is 10 or below. Now we didn't have that same experience with neupogen for her WBCs, but I could see there being a similar requirement. You said that this last go around the levels were borderline, so I assume they are checking to be sure that the levels are still suppressed enough and therefore the shot is covered by medicare. And that is an expensive shot, so you don't want to risk it not being covered.
Not positive, but that is a possibility.