jaminkw
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Good News!
in HOPE
About the profile....When I first came on the site it was just too soon for me to rehash the steps to my dx. Then when I decided I was ready, I didn't follow Ned's advice about Control N and got a good way into it and lost the whole thing. I promise I will try to do it again.
In short in the meantime, according to Dr West at onctalk, I have a cancerous chest disease that is lumped in with NSCLC. He feels that in a couple of years they will be differentiated. No there is not a great deal about the white-out of the lung which is really called a pleural effusion. It singals what is considered advanced (IIIB) NSCLC and is usually thrown by a dense mass or tumor. They can't find one. Dr West said that they do sometimes find pleural effusions without finding a dense mass but, again, I find that's not so common either. I certainly take no pleasure in being unique in the case of cancer. It makes it really hard to benefit from other's experience.
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Good News!
in HOPE
I hate calling my doctor's office unless I really have to so I didn't call back and question (my questions these days are always delayed reactions) why they were moving my Feb CT/PET to the end of March. I learned the good news when I went for this last infusion on Jan 29. It is because my previously "stable" scans turned to "improved" with the CT WET done on Jan 8. I have always counted on my husband to hear everything at meetings with the doc but this time he spaced too! I heard "improved" and "your lungs look great" and something about the pleural thickening. I don't have a clue but my husband thinks she said something like it cleaned itself up nicely. Whatever, I'm happy with one more chemo cocktail on Feb 19, an Avastin three weeks later and the CT/PET that will probably tell us more about the intervals and length of the Avastin maintenance? I'm really still on the fence about this chemo--I know I probably need it to control the cancer but my husband and I are both scared about how much of it the body can take before it starts having a negative effect. I know a lot of you have been doing chemo for a long time relative to my short three months but it's still scary to me.
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I just had my fifth Taxol/Carbo/Avastin cocktail. It wasn't a straight line of side-effects because it was administered differently all but 2 times! In any case, I was disappointed this time because I thought it would be like the second--some manageable naseau the fourth day and a little into the fifth. Instead I've had constipation and cramping (only encountered once before) and naseau beginning the third day, fourth day and into the fifth. I had asked a family member on chemo some years ago if the effects were worse with each infusion and she said no. I agree so far with Ned, the fifth is a little worse but at least I don't have the headaches I had the last two infusions--a cold, sinusitis or 1/2hr vs 1 hr infusion of Avastin???
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My sister has been visiting all week from Arizona so I'm touching base while she still sleeps. I slept until 5 am (instead of 4) this morning, yea! It doesn't take much to get me excited these days and my labs really got me up. I get them every two weeks after chemo and that puts me one week before the next infusion. First time 2.3 and a call from the doc to get ahold of some neupogen right away. 2nd time, 4.3. Third time 5.4 and then 8.something a week later at time of infusion! This time, 8.1 two weeks after the infusion and with a really bad cold. Can't wait to see if they're still up when I go to MDACC next week. I am still taking three shots of the neupogen after each infusion but think it's awesome that it just keeps going up or staying up. What do you think?
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Donna, I found it really important when I quit smoking years ago to identify the specific situations that made me want to smoke long after the 30-day period of the physical addiction. One that surprised me for me was fatigue. Although as smokers we all say we smoke to calm ourselves down, since nicotine is actually a stimulant, it makes sense that the "calming" actually comes from stopping whatever you are doing, walking away from it physically or emotionally, striking the match and the time it takes to smoke the cigarette. I've always been a bit of a workaholic and the stimulant factor gave me that little burst of energy I wanted to finish a task when I was already tired. Solution, stop and take a rest when I am tired. Duh!
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I've been hearing about this tarceva on this site and have been planning on googling it. There's been no mention of it for me but I'm still early in the program. If so many people are taking it, it must be worthwhile but there sounds like a lot of unpleasant side effects.
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It worked! I went to bed around 9pm with my normal pre-cancer Tylenol PM which contains benadryl and helps my nighttime allergies. I woke up around 1 am and took my Atavan and went right back to sleep until 4:45. This was a marked improvement over 4, 3 and even 2 am to remain awake for the remainder of the day.
I was reading in bed at night for awhile there. I'll try that again but will stay with the surer thing until I get over this cold.
Thanks everyone.
Judy
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Maryanne: Doing something nice for someone when you really don't enjoy doing it is the best! Unfortunately, I had to do something nice for my massage therapist this morning and cancel my appointment. Late yesterday I started with a real coughing, sniffling, sneezing cold and didn't think it would be fair to subject her to it. She just got over one and made my appointment late in the week to be sure she wouldn't contaminate me. What a bummer! I was so looking forward.
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Thanks for all the feedback. Since I have Tylenol PM on hand, I'll probably try that first. Never thought of starting with that and then the Atavan if I wake up earlier than I want. It's really important right now for me to get sleep since I've come down with a cold--coughing, sniffling, sneezing. I need to get well before chem on Jan 29.
Thanks again guys. If one thing doesn't work, I'll move on to another.
Judy
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There was some discussion a few days ago about doing massage therapy during chemo treatment. I googled massage and cancer and came up with this (oops forgot to note the web address):
Q: Is massage safe for cancer patients?
A: People used to worry that massage could spread cancer cells. This is not true for most cancers. It is wise, though, to avoid massaging body areas known to have cancer or inflammation. And be sure to talk with your doctor before starting massage therapy.
Many cancer patients attain pain relief and emotional comfort from massage administered by a skilled therapist. Some cancer centers have incorporated massage rooms into their facilities. Massage before chemotherapy treatments helps lower anxiety. It has also been shown to heighten immune function and improve blood flow.
--Bernice Crook, RN, OCN
I will ask my onc next appointment but I wouldn't give up the one I have scheduled for tomorrow for all the tea in China. It's been a grueling week putting numbers together for MDACC and ORH people who are trying to get me some financial help. I used to do it monthly but have only had one other massage since dx. My massage therapist is one of those people who just exude goodness and the physical and emotional benefit of a session with her is worth the risk. I can't imagine it hurting me.
Judy
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My physical side effects are so benign compared to those of other members signatures I've read. But I really do want to complain about waking at four am. I'm just into my third month of chemo every three weeks and before my last infusion had just started to relish waking up at five and occasionally even six am. Now I'm back to four am. I try staying up later--last night to an amazing ten pm. No luck, up at four. I take an Atavan before bed so I go right to sleep. Anybody have this problem? Any ideas?
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I love getting up in the morning (unfortunately it's usually around 4 am) and finding support online! Wendy, that's a great idea. I'm sure my PC physician's office will give me samples. Patti, like you I had a perfect bp, even on the normal-low side all my life. Mine went up earlier--about 6 or 7 years ago but I stayed on Diovan 80mg until this year. I know now the cancer was lurking and trying to show itself for awhile before my pleural effusion. My daughter (also named Wendy) is an oncology nurse. Even though she's five hours away, we talk daily and next to my husband is my greatest family support. She and her "oncology friends" all say that it's o.k. for me to get down and feel sorry for myself on occasion. But they all feel I have a great scenario--stable since before Dx, no new fluid since the first in Sep and (with the exception of the 3rd FAST infusion) a great tolerance for chemo. Because I've always had white coat syndrome and a weak stomach that caused me to vomit with any and all anesthesia and prescription pain meds, chemo was always my worst nightmare. I'm suprised and happy it's tolerable.
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Gail: In my case, I had a perfectly healthy lung in the xray taken for my annual checkup in June and a complete white out in September. They found the cancer(adenocarcinoma) cells in the fluid but dx and staging was not simple. I was referred to a pulmonologist who didn't feel he could definitively determine anything with a surgical procedure. Even at MD Anderson, they went back and forth deciding if I need a thoracic surgeon or a medical oncologist. Don't know if your friends Dad's spot is a tumor or a nodule. Seem like the nodules are pesky even for top notch cancer doctors but I wound up with the medical oncologist, chemo but no surgery. I'd take the hospital referrals from Kasey if you want Phila and put yourself in the hands of a team. My medical oncologist was the one who finally nailed the IIIB lung cancer after further pathological consultation using the slides from my infusion. It's all so individual. Good luck to your friend and her Dad.
Judy
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Thanks guys. I will check out the massage issue. I just can't imagine it being bad and have had one already since doing chemo with no ill effects but it's worth checking out. This is twice on the site that I've heard high blood pressure associated with Avastin. It's just a matter of a pill if you get the right one. Even before my Dx my 80 mg Diovan had to be doubled. Now I'm barely controlling it with 240mg. If it's the Avastin, I guess I'd better get to work on the right pressure pill before I go on Avastin maintenance.
My promise to myself as soon as I get through the next couple of weeks is to fill in the diagnosis and course of my treatment to be repeated with my posts. It's helpful sometimes to read others. Long story short--hospitalized in September with a pleural effusion and pneumonia and had two liters of fluid drained from my lung; they found cancer cells--adenocarcinoma to be exact in the fluid; x-rays showed fluid gone; CTs no tumor; CT/PET no tumor but nodules and activity in the chest wall described as associated with "low level malignancy." Diagnosis was still IIIB Lung Cancer because once you've thrown an effusion that's where you are staged. After four infusions (Taxol/Carboplatin/Avastin) at three-week intervals, I'm stable but I was stable according to xray and CT before chemo. For the most part, I feel pretty good and have a hard time accepting the Advanced NSCLC diagnosis. The only times I feel bad is pretty much after chemo. Go figure!
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Carrie: Thanks for the feedback. I am taking Avastin w/Taxol and Carboplatin. My doctor told me months ago when I had a pressure rise to take another half of my 160mg Diovan. I'm going to keep an eye on it with my cuff and experiment within that dosage and times of day. I have two more chemo cocktails with Avastin but then am going to go on Avastin maintenance. This could be a problem but I dread the experimenting with one pressure pill after another. My husband went through it and it was dreadful. I get my prescriptions from Canada and that doesn't lend itself well to short term use and switching meds.
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Does anyone have experience with a rise in blood pressure associated with chemotherapy? I have been taking Diovan for years but it's not working well now.
Judy
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Randy, I'm sticking with MDACC for now and may be locked in (in a good way!) by acceptance in a drug replacement program for Avastin. They said I was accepted but needed to send in some documentation. Haven't heard since then but rep is also working on replacement of some other drugs and hospital is saying they want to help with other medical bills. We got caught uninsured and it's a nightmare. The travel will be worth it if we get even some financial relief from what looks like disaster!
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Thank Ry, Randy and Rich. I've been busy feeling the feelings--yeh, the kick in the gut--but I'm on top of it again. I started last night with my post here. Your responses were really comforting this morning. I followed up with a call to my massage therapist who has offered free massages through my chemos, made an appointment and had another good cry with her. Later I was feeling up to calling a good friend who lives miles away but who is coming to visit in March. We made plans. Asked my daughter to call the hospital and confirm I heard correctly (because my husband wasn't sure he heard the same and I wasn't up to making the call) that I'll have two more three-chemo cocktails, then another CT/PET. If I'm still stable, I'll go on Avastin maintenance. I'm trying to take one day at a time and not fret over how long I'll be doing maintenance every three weeks. My husband and I are traveling between Key West and Orlando for the treatments and it's getting wearing after five or six trips! I'm focusing on Ned's "signature" that says his Avastin only infusions were a cake walk. I know I could use a real live support group but I'm a retired mental health therapist. My massage therapist, who has known me for years, agrees if I join the one here, I'll wind up being the therapist taking care of everyone else. I'll stick with the online group but will consider a phone buddy.
Thanks all who responded for being there.
Much appreciation, Judy
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Didn't have the courage to ask the hard question outright but I guess between my husband and I, we got close enough that the doctor gave it straight. Believe it or not, we three were sitting there in a fairly small circle and I never heard her say it. My husband told me later. I should be grateful for the "manageable" but can't find the positive yet. Crying off and on for a couple of days. Told my son and daughter and sisters but don't want to talk to friends yet. Hope I can get back on top of it all tomorrow.
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Thanks guys! I love my one small glass of red wine a day so I didn't ask the doctor. A chemo nurse said I'm supposed to tell you no but I know people who do. One question, does it have something to do with your particular chemo cocktail. I left my notes home but I think mine is Carboplatin/Taxol/Avastin. RandyW says red wine is a source of antioxidants and another chemo nurse told me to stop taking my vitamins with anitoxidants because I should take antioxidants. Anybody know anything about this?
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Patti: I really like that perspective. Guess I'll hold onto this weight and maybe even more until my next CT/PET. The first CT after 2 chemos was stable. Now I wish I'd gained more weight. Maybe it would have shown improvement. I really mean it. I need positive thinking right now and this gives me another positive to hold onto.
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I quit smoking years ago but initially my gain was because I feed naseau. Also, I've never been a big bread eater but I started craving tea and toast--an old comfort combo from childhood. Right now, though, it's more the inactivity AND too many cookies and candy from the holiday. I've cut them back but not out for several days and guess I need to just stop. Easier said than done!
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Carol,
Congratulations on your Nov NED. I just joined in late Dec and had to go back and check the LC Dictionary the make sure it meant what I thought. I love signatures like yours--not too long and with a happy ending. Of course you were a "IIA" and I am a "IIIB" but people on the site say not to pay attention to the statistics that go with the codes.
I am just beginning treatment (looking at my fourth next Tue) and have gained five pound since I started in November. I've complained because I just lost fifteen pounds before Dx (using that dictionary again!) and people keep saying not to worry, I'll need that weight. I really don't believe it and it sounds like lots of people are struggling with weight issues at various stages of LC. For me it's not exercising--I'm afraid to use the total gym that I really love but it's no excuse. I could walk for exercise. It tough when I'm having to prioritize how to use what energy I have between chemos. Need to talk to my oncologist about the total gym.
Hang in there with the exercise. I exercised for years with no weight loss but when the exercise became habit and I started watching what I ate (I used Weight Watches online), it started coming off. It was slow but steady. I really want to get motivated before I gain back more than I want to think about losing--again.
Judy
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Ned:
Glad you can relate--to the middle class issue and the Microsoft Explorer glitches. Your "how tos" are so concise I cut and paste them into a Word document. Thanks again.
Judy
Nutrition Suggestions or recomendations
in HEALTHY LIVING / RECIPES
Posted
Was just browsing the web and had to reply to Blaze100. I started laughing at #2 cause I'm old enough to remember taking spoonfuls of Marshmallow Fluff!
Judy in Key West still avoiding working on my profile!