jaminkw
-
Posts
4,754 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by jaminkw
-
-
Good one!
-
Randy, so sorry to hear about the passing of your friends' Dad. Any death from cancer will strike a chord of saddness in the hearts of survivors and surviving caretakers.
Judy in Key West
-
Kristi: It sounds like oh so much to take in all at once. You and your family must really be struggling with it. I love the thought of having the immediate goal of getting your Dad to your niece's wedding. After I read it, I thought to go to my desktop calendar and write it in. It may sound weird but I don't think you can have too much positive energy directed towards a goal.
Good luck to you and your family and pain relief very soon for your Dad.
Judy in Key West
-
I posted Dr West last night but am wondering now if I misunderstood you and asked the wrong question. You did say you were questioning why a CT and a CT/PET were scheduled within a day of one another didn't you? If so, Dr West thinks it could happen that someone would order both a CT and a CT/PET because the CT by itself might offer more detail than the CT that's combined with the PET. It didn't address the proximity in time, just the info offered by the two tests. He explained it like any electronic all-in-one. Any one function might not be as good as a standalone--i.e. a standalone camera will likely take better pics than a camera in a cell phone.
Anyway, I wanted to get you some kind of answer but am glad you are beginning to be able to think through to some little details that might explain your husband's particular follow-up. I suffer from a similar need to know or need to make sense of things the doctors say or do. The questions in my mind, of course, always come up between visits
Good luck tomorrow.
Judy in Key West
-
elkiesmom: I can tell the frequency is really freaking you out but I have to agree with others here who have said it's better to err on the side of caution with this disease. I admit, though, I thought as soon as I read it that I'd never heard of getting a CT and a CT/PET around the same time. Since you mentioned it again, I think I'll go over to Grace and ask Dr West. I'll let you know when I get a reply.
And yes, Florida is a long state, believe me I know since I live at the southernmost end. Whenever we travel north, it seems forever before we cross the border into Georgia.
Judy in Key West
-
Elkiesmom: I didn't mention that one of the reasons I initially balked at the Avastin maintenance was because it meant continuing to travel from Key West to Orlando for treatments every three weeks. It's a seven to eight hour trip and we've been doing it since October and were really looking forward to a break. Well you know, once you know what you have to do, you do it and it's o.k.
What I really feel bad about is when I hear, and I do all the time, people having to wait days and even a week for test results. When I have scans at MD Anderson, I get the results directly from my oncologist the same day. I can't believe my good fortune because I really don't wait well so I really feel for you.
On the subject of the scans and why they are being ordered/approved, I know Dr West on cancergrace.org told me that once you are diagnosed as I have been, the expectation is that it will come back and that's why they do some of the things I didn't understand given I'm in remission. I don't know about your husband's diagnosis but it might be something like that and it's just a protocol they follow. I bristled at the mention of the "expectation" that my cancer will return but ultimately decided it was just that, an expectation, and I don't have to meet it. Same for your husband.
Judy in Key West
-
Sandra: I was recently questioning on cancergrace.org about being on Avastin maintenance for my IIIb lc when my recent CT/PET scan showed remission (that's the word my onc used even though people said they don't use that word at MD Anderson). I guess remission is equivalent to NED(???). Dr West said that once you are diagnosed with IIIb lc, it is expected that it will return. I focus on the word "expected" because we don't have to meet those expectations. If I were you, I would go to Dr West and ask the question about new discoveries relative to CT scans. He's written a lot on the subject of scans and should be up to date on the most recent info. I agree with the others that scans seem to be the best we have right now to pick up early on recurring cancer. I also wouldn't want to take the risk of giving them up because of what could happen 20 years down the line.
I've been avoiding joining a local support group because I, and people who know me well, are afraid that I'd wind up taking care of everyone else. But I have a profound need to give back as well. So I never say never. Fact is every support group of any type has it's own character or personality. Perhaps your doctor knows you and the group and don't think it's a good fit for you. We all need to find our place to deal with cancer and for now, I feel like I've found it between here and cancergrace.org.
Judy in Key West
-
I just had a CT/PET and was told I was in remission. Nevertheless, my oncologist has me on Avastin maintenance every three weeks and sees me every six. The CT/PET was April 1, 2008 and I'll find out on May 13 what the scan follow-up schedule is. I was on the side of I don't need all this stuff now until I learned my daughter-in-laws father, after surgery and "light" chemo for a dx of IIa, had a scan that showed nothing but a little blip on his liver (they even took his port out it seemed so nothing). By the next three month scan, he progressed to Stage IV. Scared the jeebies out of me and I immediately decided I'd go with my oncologist and her conservative maintenance and follow-up. I'm hoping if I put in more time in with no changes, my oncologist may begin to trust the remission a little more. Same may be true for your husband.
Hang in and be glad he's being watched closely.
Judy in Key West
-
Welcome Barb. That's great news on the scan. Good luck with the walk. You are an inspiration jumping onboard with the benefit so quickly. We need all the help we can get.
Judy in Key West
-
Pup: Not that I know of. I don't really have first hand knowledge of this stuff but I seems as long as you do it gradually as you are, you should have no problem. You'll do great. Sounds like you have been so far!
Judy in Key West
-
O.k. I'm game. I'll try it.
-
Pup: I know what you mean about needing this site. Don't know how I'd have gotten through the past several months without it.
Congrats on the great test results. Keep us posted on how you are doing without the dex. Have they told you anything about side effects for getting off it--sometimes we have go through stuff to get rid of stuff. Keep fighting. I know sometimes it feels like we don't get anything in this fight for nothing.
Judy in Key West
-
Sorry it took me so long to reply. I had been taking Flora Source for a year and had no idea they were being taken and marketed so extensively until I googled the subject after I read the replies to my post. I went to Dr West at the new cancergrace.org and asked about probiotics. I am assuming that the doctor I saw (not my regular onc and not someone I expect to see on any regular basis) was referring specifically to people on conventional cancer treatments. Dr West says he and most conventional oncologists don't recommend treatments for anything for which there is not good research to back it up. He says that too often things assumed to be good for cancer patients on traditional cancer treatments have turned out not to be good. If you are doing chem or radiation and are interested in exactly what he said, go to the site mentional about and the discussion is under "Probiotics."
Judy in Key West
-
I almost forgot to share this info. A couple of weeks ago my oncologist had me see another oncologist at MDACC who is up to date on the Avastin high blood pressure issue. When she was going over the medications and supplements I take, I mentioned that I am no longer taking the Flora Source that was on the list. I ran out and didn't reorder because it's expensive. I took it for a year, I joked, and it doesn't seem to have done much for my immune system since I was dx'd for cancer during that time. She said not to take it, that taking it or any probiotics is currently very controversial. Afterthought: I didn't think to ask but don't know if she meant people in general, people with cancer in general or people with cancer on chemo?
-
Jackie: It's me again. Can't help with the surgery questions but happened to tune into The View last week and Whoopie who doesn't wear a bra was raving about "Flexies." It's a one piece with snaps where you need them. I wore one pieces for years before my girls needed taming!
Good luck with the surgery, and it's Sunday, hopefully members who have more info for you will wake up and respond soon.
Judy in Key West
-
I haven't been on Tarceva but am IIIB so I read about any drug I might ultimately be on. I'm not sure you're out of the window for getting the rash but I wouldn't worry about not getting it. From what I hear, that rash can run from none to mild to really nasty so I'd be happy if I didn't get it. I don't think I'd put too much stock in the view that a drug is only working if you have significant side effects. I'm sure others who have done Tarceva will come in and give you more info. Good luck.
Judy in Key West
-
Jackie: Thanks for responding. Sounds like you've had a tough time too. Although I was finally diagnosed via cytology slides because I had not discernable tumor, we do have in common that we both appear to have intuited something was wrong before the doctors picked up on it or before any symptoms appeared. I was also told I should respond well to treatment because I was so healthy. Glad you finally got the doctors that did the job.! I sure did.
I trust my doctor implicitly--I'm at MD Anderson and if you don't trust them you won't trust any doctors. I also post Dr West at onctalk.com now cancergrace.org between doctor visits. He always presents a view that mirrors my oncologist at MDACC. But the doctors are all so enamoured with Avastin. But I've been borthered on occasion when my intuition (not always to be trusted!) conflicts with the doctors big picture. In my case, I'm going to opt for asking for a break. I need it, my body needs it and, in the meantime, scans can tell if anything is happening. If the break is brief, I don't think I'll get anywhere dire before it's caught. That's my hope anyway--of course, all only if my doctor agrees.
Good luck with your surgery. I'll be waiting for an update.
Judy in Key West
-
Carole, your supportive response is very helpful. You and Patti B represent two valid perspectives on my situation. That's what makes it so hard. I have a niece who is my hero. She has breast cancer with mets to the bone and liver. After about a year of weekly chemos, she said enough. She changed her diet, started exercise and went on an approved hormone treatment for her cancer. Everyone says she looks great and she said she's never felt better. Of course, she is on another treatment regime and I'm considering none, but not for prolonged periods of time. And I am basing it on the logic Carole so clearly laid out. If my doctor is o.k. with a break, I expect frequent follow-up scans. But Patti, I hear you too. Bottom line, staying alive wins and I can't see me going against my doctor's strong recommendation. We'll have "the talk" in three weeks. She knew I was skeptical about the Avastin before the CT/PET and I went with her wishes. Post CT/PET, I need to hear her plan now to see if it will accommodate mine or if we can find a compromise.
Judy in Key West
Judy in Key West
-
Max: The fact that you don't have the SOB when you are exercising with the Wii suggested to me it might be outdoor allergies. But then you said in another post, it's worse at night and hardly a problem at all during the day. I'd look for leads in Snowflake's post--check the route you walk. Is there even a gradual incline? Also, I see you are from Arizona and you are supposed to have practically no humidity there. I'd still check, is the humidity higher at night (Snowflake talks about heavier air being a problem) or does it get cold at night?
Hope the doctor gives you some real answers.
Judy in Key West
-
Mary: You and Joe have really had to struggle to get to this place where things are finally looking more positive. Thanks for updating and will be looking for more good news to come in the future.
Judy in Key West
-
Like I've seen people say on this site--take a deep breath. I would also suggest you take a look at the signature (the words in blue letters) of the gentleman who just posted you about getting a second opinion. That is a list of all the "stuff" he went through fighting cancer and he's still here. People on this site will tell you, the doctors don't know when anyone is going to die so don't listen to them.
Wishing you a calmer place to stand beside your Mom in this difficult time.
Judy in Key West
-
I thought of the subject after doing a post to Dr West at the new site there. For those who remember, I was told my cancer was in remission on April 1. To be more precise, my doctor said, let's stay on the Avastin "for awhile" and keep this cancer in remission. So am I a survivor? If not, how long does it take to become one in the face of no evidence of the disease? How is "maintenance" different from follow-up in my case? I don't want to appear ungrateful but I really, really want the doctors' (three of them!) blessings in seeing how my body will handle this now without chemo.
My original CT/PET said it appeared to be low level malignancy, inflammation or infection. My follow-up after six infusions of Carboplatin/Taxol/Avastin and two Avastin maintenance infusions about five months later showed the malignant pleural thickening was gone and there was no evidence of cancer cells in the chest wall or anywhere else.
No one wants to give any credibility to what I and my family (including my daughter who is an oncology nurse) believe were a combination of freaky events that led to the effusion that we suspect revealed an early stage cancer. At the same time, none of the experts can explain how a pleural effusion that defines advanced lung cancer appeared so suddenly after a complete physical three months earlier and disappeared so quickly after first line treatment. What am I missing?
Judy in Key West
P.S. Looks like maybe Comcast in Key West has resolved it's issues just in time for me to leave for Orlando again!
-
Jenn:
I had Avastin with Carboplatin and Taxol for 6 infusions, and now have had two Avastin only maintenance infusions--all every three weeks. Although I didn't have the brain mets, I had a followup scan and my Stage IIIB adenocarcinoma is in remission. Although it's difficult to know what did what, I think Avastin is worth looking at particularly in combo with other chemos. I was real skeptical about the Avastin maintenance because of the high blood pressure. That's now under control and three out of three doctors I see seem really optomistic about Avastin so I have to think you and your husband have made a good choice.
Judy in Key West
-
Don't know where to put this but wanted to post that I've missed visiting the site. I've had tons to do since I got home after two weeks away but the main problem has been a wireless issue here in Key West. I can rarely get on at my laptop and when I do, I get kicked off after a very short time. I hate doing the group site sitting up at my work computer. I usually visit when I'm taking a break at the laptop in a comfy chair.
In the meantime, I'm working on other ways to give back. Everywhere I went the past several months, people said they just loved the hat my husband bought me when I first lost my hair. It is soft and stretchy and comfortable but is no longer available in the store where he bought it or online. I guess it was a special promo item because it had a breast cancer symbol on it. I found a free pattern to knit one very much like it on lionbrand.com called a "Chemo cap." I haven't knitted in years but plan on starting again and donating the hats to my daughter's hospital chemo floor where she works and to MDACC.
Hope I'm wireless internet happy again pretty soon!
Judy in Key West
I wonder why
in NSCLC GROUP
Posted
elkiesmom: Oh a huge congratulations to you and to Gary. I can't think of a better way to end the week than hearing such great news from a fellow site member. Enjoy this time in your new home state and come back to Florida for more good news in six months.
Yeah!
Judy in Key West