jaminkw
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Posts posted by jaminkw
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The picture of Harry you chose for your Avatar and the line saying it was Harry before his diagnosis has jumped out at me many times as I was reading posts. He appears so strong and vital looking. It's just not fair.
My sincerest condolences to you and your family. I hope you will continue to come here whenever and if ever you need the support of the LCSC family.
Judy in Key West
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Deb: I saw Dr West's reply to your post. Sorry I missed that the chemo combo wasn't working, but Dr West's the best, isn't he. Hope you can get back on track with Dave's oncologist. After 24 years together, don't even worry about age differences. In fact, you could start to look at it as a compliment. Sorry not to you Dave but to Deb.
Deb I can just feel you leveling out in your post and I'm so glad for you. We've all been there with these highs and lows and sometimes feeling like you're just going to jump out of your skin with the fear and worry and frustration of it all. You're hanging in there really well and best of luck with the docs. We'll be waiting for your updates, vents or whatever you need us for.
Judy in Key West
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Dominick (grandson) and a visiting manatee in our canal.
Ian and Logan in Nonnie's & PopPop's RV
PopPop and his boys
Nonnie and Dom fooling around
P.S. Ned, you're a genius!
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Renate: Like you I was healthy, active and exercised 4 to 5 times a week before I was hospitalized with pneumonia and a pleural effusion and ultimately diagnosed with cancer. By the time I was into my sixth infusion and put on Avastin maintenance, I felt like an old lady. Well, I am 64 but didn't feel really old before all of this.
When I went into remission and they put me on Avastin maintenance, it was really hard. Being in remission was great but staying on chemo was in my mind not good. It's been more than two months now, and I'm not feeling as awful as I was before so I'm living with it. I am planning a break, length of time undetermined, in the Fall. But I don't know about Avastin and neuropathy if you already are experiencing the symptoms. I do know my oncologist asked the first few times I had it about numbness in my hands or feet. Like Ned I've had numbness, pain and tingling prior to cancer, but in my hands not my feet so it's hard to tell.
Don't get discouraged just yet but on the matter of Avastin keeping the cancer from progressing, the evidence isn't all that strong.
I know where you're coming from when the treatment makes you feel worse than you did before they told you you had cancer.
pm me if you'd like, Judy in Key West
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Shedevil: You're from Indiana, I see, I but don't know what kind of facility you will be going to if a biopsy is ordered. It may be too small, like Ned says, and a PET may be ordered instead of or in addition to a biopsy. I didn't have a biopsy but hopefully someone with more info than I will come in and give you cues to questions that take into consideration different types of procedures they use today for biopsies. I know I've read of different types and Dr West on cancergrace.org talks about differences in treatment relative to different facilities. One of many things the sites do is offer you the alternatives that are out there that your facility if it's not a major center won't tell you about.
Good luck tomorrow.
Judy in Key West
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Deb: Dr West was very helpful to me in considering this question. I was not in the same situation but the Avastin in the combo in question eventually resulted in stroke-level high bp. People on the site encouraged me to wait and see if the doctors could level out my bp and it did. It made it easier to stay on the treatment, for then and into Avastin maintenance when I went into remission. Then the ongoing chronic fatigue resulted in the question rearing its ugly head again--quantity or quality of life? I'm compromising and taking a break in the Fall with my oncologist's blessing.
I guess what I'm saying is, if they can adjust Dave's meds, maybe he can get through one more or even three more of the chemo cocktail. It meant everything in my case to make it through the six but even four is considered adequate in many cases. That doesn't mean the question won't arise again but you have to take each one separately. For right now, I think you're right in questioning the meds.
Good luck and hope the doctors really listen to you. Mine do and between visits and as a second opinion, Dr West is a godsend. I'll be watching his site to see how he responds to you.
The best of luck to you and Dave, Judy in Key West
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Thought of one! Those of you who've been around the boards may remember that a couple of months ago I was going bonkers about Avastin maintenance. It was my first or second such infusion and I reluctantly went for my treatment. In the waiting room I recalled that they couldn't give me my first Avastin infusion in my original cocktail because of protein in my urine. I told the young woman who was my chemo nurse that day that I really didn't want to do this infusion and had decided that if it wasn't meant for me to take it, my body would throw protein in my urine. When the labs came back, the nurse returned and with a straight face said, "I'm sorry to disappoint you. You not only didn't show protein, you showed negative protein. So, what are we going to do?" I chickened out and went for the treatment. So much for my body betraying my wishes!
Judy in Key West
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Connie, well said.
Judy in Key West
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My immediate response echoed Shellit--too funny.
Judy in Key West
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Snappy: I'm so sorry you and your husband have been having such a rough time. I wish I could help but I don't have any idea what the sore mouth is all about if he's not currently doing chemo. It doesn't sound like it's surgery related but maybe someone whose had similar surgery will come by and offer more.
I do remember a couple of times in my life with much lesser surgery than he's had that I was told I expected too much of my body for a too quick recovery. Again, I haven't had that surgery and I think you have a point about lack of nutrition with difficulty eating. Also, the meds on a near empty stomach can be rough.
Hope you get some answers from the dentist because being able to eat again could make all the difference.
Judy in Key West
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Carole, Yum. I eat spinach and spinach salads a lot but this really dresses it up. I'll try it but maybe substitute pecans for the walnuts. I love pecans and raspberries--oh well, what's not great about raspberries!
Thanks for the recipe.
Judy in Key West
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Tracy, I posted on your CarePage but am happy to offer it again--hurray, congratulations, way to go!
Judy in Key West
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Dang, I'm glad Ned clarified that too. I want to be in the club but I'm not on Altima either.
Carole, so sorry you've been having a bad time of it. Rest up now girl so you can get back on the road with family in July. But do take it easy, o.k.
Sandra, I feel for you. It must be tough keeping up with the family while you're in pain. Glad you're able to barrel through it and do the baseball thing. But if the going gets too tough, just opt out. Your family will understand.
My hospitalization for pneumonia that started this whole cancer thing was nine months ago. Since my dx all my traveling has been back and forth to Orlando for treatment. The silver lining in that is that I see my kids and grandkids more because they're along the route to MDACC. But in a couple of weeks I taking a real road trip. My husband will be working about four weeks up in Ohio but he's taking me to NJ and dropping me in a spot friends have on the Rancocas River. It's in a little burg close to all my family and friends and I am so excited. I'll be in our RV parked on the river just me and the birds and the beavers. I've already planned a sleep over with one of my girlfriends. I'll be extending my chemo to a four-week interval instead of three and getting it going to and coming from NJ. I considered getting a mobile internet device and service but think I'll stick to hotspots. I can't go too long without checking in to LCSC.
Girls and guys, for four weeks it's going to be quality of life!
Judy in Key West
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Ned: You really should start a second career as a computer tech. You just know we sometimes have brain freezes and people are saying "just click" and we're not looking in the right place and not clicking the right words. Don't know how many times I've caught myself doing that but only after wasting so much time. Hope this helps Cathy.
Awesome.
Judy in Key West
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Mary: I love your spirit girl and your sense of humor. Two hours is a piece of cake. Best of luck.
Judy in Key West
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One of my "issues" has always been financial fear. As my husband of 42 years and I became more financially secure, it got a little better. But as we appproached retirement, my fear reared its ugly head again. When I was diagnosed with IIIb lung cancer with no health insurance almost two years before I was eligible for Medicare, it wasn't hard to figure out what the lesson was for me in this experience. I had to learn to let it go.
What positive outcome has there been for you in this experience as a cancer survivor or caretaker of someone with cancer? What has it taught you? Is there something about yourself you didn't really like that it helped you change? Is there some major issue it helped you resolve, a relationship it helped you heal?
Judy in Key West
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Mary: Don't know how they told you there is no cure but it sounds like it wasn't very tactful. I remember when my oncologist told me only after I finally gave her the opening. She said it wasn't cureable but it was manageable. It was a blow but I guess they feel they have to be honest but I don't have to believe it. As long as the treatment points me in the right direction, I get to decide how far I go with it.
It seems cold for a center like Sloan to just not offer you anything. If it's close to home and you will need to travel a significant distance to one of the others, consider first if Sloan would let you see a different oncologist who might have a more aggressive approach. I so admire your spirit but take it from one who has been traveling a great distance for treatment, the travel is wearing in and of itself. But if that's the only choice, go for it.
Judy in Key West
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Karla: I haven't be on the site long enough to "know" you and Frank but it sounds like you both have found peace with your current decision. It touched me to hear your goal for the two of you now.
Judy in Key West
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Susan: Sorry about your mother having to go back on chemo. I'm on a maintenance chemo now and I whine to my husband--"I don't want to do this anymore"--every three weeks when I go for my next infusion. Then I think about the possibility of having to go back on the real stuff. And radiation too! Tell your mom I really feel for her.
Judy in Key Wes
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Really good article Barb. Thanks
Judy in Key West
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Wow! Great news and also to be reminded we have long long terms survivors here on the site too. I needed that going into yet another trip to Orlando.
Judy in Key West
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Marianne: I had my port put in seven months ago. Frankly, I've always thought it was a pain. No pun intended since it's more a nuisance than painful. It's irritating and irritated by a bra strap and I often complain when it feels "raised" to the touch. Other times it seem to lay nice and flat and relaxed. I don't know for beans about this thing but I know the alternative, getting a line in a vein by needle every time, can have pretty unpleasant consequences.
Judy in Key West
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Denise,
Any pain that keeps you from sleeping is just too much! When mine gets really really bad, I try alternating 20 min with a heating pad and 20 cold (those soft gel packs you put in the freezer). My massage therapist recommended it years ago. I have chronic back pain and it has to be really bad to do this routine cause it means getting up every 20 minutes but it is really effective.
Judy in Key West
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Maryanne, what wonderful photos! Thanks for sharing them.
Judy in Key West
Getting to Know You June 6
in JUST FOR FUN
Posted
Good one Patti, and hats off to your doc with the sense of humor.
Judy in Key West