Calling all TNs
Comments
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Stupid boob there are some legitimate work from home although they are few and far between. Check for moonlighters.com and other things like that. there are a few sites, you will have to look hard.
I know how you feel about your father. I have lost both of my parents then lost my only brother 2 years ago. It was devastating. There is no one who I grew up with no one to share childhood stories with. It is very hard.
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Oh, Bak, that is awful, something nightmares are made of!
I had my port taken out after a year and a half just last week. Thankfully, everything went smoothly and the Lidocaine was sufficient. But it turned out I was allergic to the adhesive on the bandage they put over it and after two days of intense itching, I finally ripped it off and found blisters underneath. Fortunately, the wound itself was not affected. It's finally all healing up now. I could have kept the port if I had wanted to, but it really hasn't been used for over a year anyhow.
Hope you heal quickly; it's almost bathing suit weather.
Carol
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StupidBoob - Can you sign up for Obamacare?
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Bak94 you and I are so much alike..................I totally understand everything you said.
I have not yet had my port removed, because I feel it is not over yet............I know not the right thinking but I had that feeling about removing it the first time. I was going to have it removed on my 2 year (maybe) and then found out that the cancer had returned. So, with not even being out of treatment a year this time, I am going to keep mine a bit longer. Thanks for sharing your experience. I am sorry that it hurt and still hurts. Glad you had some meds. These Drs. do this all the time and they think they know what they are talking about......WRONG!!!
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InspiredbyD I thought about it but my hubby heard something about it and cancer.............I will have to check back into it. What he heard made it sound like it would not be good for cancer patients.
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tekwriter thank you for that website, I will check it out. I have never heard of it before.
I am sorry that you have lost so many as well. You are right, it is devastating
I was so afraid I was going to lose my brother with his set back from open heart surgery and he is my only sibling too. I have a half-sister but she would not pee on me if I were on fire. My mama and I were best friends as well as mother and daughter, so that loss was horrible and she has been gone 10 years. Daddy just a little over a year.
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Bak94, {{{hugs}}}
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You do not sign up for "Obamacare." You sign up for a health insurance policy either through a private company or a state exchange where they are not allowed to deny coverage because of a pre-existing condition. For all of us, cancer. However, March 31 was the deadline - which has been in the news for months. I don't know what happens if you miss the deadline.
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Thank you all for the kind words. Doing much better now. I hope my port story does not scare anyone, as most people go through the removal with no issues at all. I think my doc was surprised at how difficult it was to remove, I could see it in his expression, I knew he saw a challenge. He tried to downplay it to keep me calm. Well, I got through it anyways and my port is out. Stupidboob-I get it about the port being a security blanket. Unfortunately the last couple of times they tried to use mine it would not work, even when they did the enzyme thing. Now I know why! It was overtaken by scar tissue!
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If I remember reading and it has been awhile there is a penalty at tax time for no insurance. However if you are unemployed or recently lose you insurance there is a waiver of the penalty.
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Journey4life - thank you so much! I appreciate that!
Bak94 - I'm so sorry about your port experience. Glad to hear you're doing better!
Stupidboob - I'm so sorry you're struggling right now. So glad you reached out for support though. I think we all have a hard time with the diet and exercise, so don't beat yourself up. Just do the best you can and know that that's enough. Hugs.
I have a quick question - The tips of my fingers and palms of my hands are a little red and quite sensitive. The exact feeling is hard to describe…almost like a blister or swollen feeling, but there are no blisters or swelling. If the blood rushes to those areas, I can feel throbbing or pulsing. Is this neuropathy or hand foot syndrome? If it's neuropathy, can I ask if anyone here has taken Glutamine and did it help you? And if it's hand foot syndrome, is there anything I can do for some relief? I have a Lindi cream specifically for that, but it's not doing much. Right now, whichever it is it's still in mild stages, but I'd like to be proactive and make sure it doesn't get worse. I need to get my butt over on a chemo thread, but just haven't done it yet. I appreciate any insight.
Hope everyone else is having a good week!
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Ally, I did L glutamine and it did help. I was at a breast cancer symposium and a researcher mentioned glutamine in a cancer pathway so I stopped taking it. ( I tend to overanalyze) Started gabopentin instead and had great improvement. I'm off it now and neuropathy is much better.
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FierceBlue - nope, you're not overanalyzing at all. I'm so glad you mentioned that. I will definitely rethink starting Glutamine now. It's so hard with all these supplements. There's always two very different opinions/sides and I never know which way to go. I will look into gabopentin. Thanks so much.
I'm still not positive, but after doing some googling, I'm thinking this looks and feels more like hand foot syndrome. The tips of my fingers are red and slightly swollen I guess you could say. And cold water relieves the hot feeling and sensitivity…I'm reading that's more the syndrome.
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Yes, that's the frustrating thing. You can do all the research in the world and make what you think is a good informed decision, and then someone else comes along with a theory and scares the crap outta you!
The specialist I saw on Monday told me that by my eating healthy, taking antioxidants (liposomal vitamin c) green smoothies etc. I probably just sent the cancer into dormancy. Ugh. Kick a girl while she's down!
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FierceBluebird.....that's aggravating to be told that healthy eating may have hurt. It's like "damned if you do and damned if you don't". I wonder about that from time to time too, but I still have to believe that eating healthy for us is generally better than eating crap all day. I think they are just really starting to learn about stem cancer cells and that's where the issue seems to be. Until they know more, we just have to make the best decisions we can with the information we have. I hate that! It's all still such a guessing game.
Stupidboob, sending more virtual hugs your way.
I went for a 30 minute bicycle ride yesterday and had my second radiation session. Both went wonderfully. Today it's really windy so biking outside is probably not in the cards. I'll just have to see if the wind dies down later on today. Strong thunderstorms are predicted here tonight with the possibilty of tornadoes (it's that time of year for us in the mountains in Tennessee). We are going ballroom dancing tonight, but we should be home by the time the storms arrive since they are expected around midnight. The thunderstorms were really loud here last night and we had at least a couple inches of rain. Ahh....springtime in the mountains! I'm just VERY GRATEFUL to be able to feel up to riding and dancing this spring.
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Ok girls I hope someone can help me find info on recurrence rates! I did neo adjunct chemo and when I had my MX and they removed 13 lymph nodes I had PCR! I know I had at least 3 positive nodes light up on my PET scan prior to starting my chemo and also had fine needle biopsy of 1 node that was positive. I asked my MO about recurrence rates after PCR and she really didn't have an answer, she said she would research it. She said it was awesome that I got PCR and I'm doing so well. She said I will be followed very closely, but I just wanted some numbers thrown at me as far as survival rates/ recurrence rates. Anyone have any info??
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Gramof2boys - Woo Hoo! Congratulations on the PCR. I was lucky enough to have the same result and feel very happy about that. I have not researched survival rates/reoccurrence rates, but wanted you to know that I'm thrilled for you. I decided that the "numbers" don't mean much to me so I'm content with living my life assuming that cancer is part of my past, not my future, unless proven otherwise down the road. It did take me a while to get to that frame of mind though. Anyway, just wanted you to know that I remember how it felt to get that news. Time to celebrate!
Kathy
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Gram I agree with Kathy. I have no interest in the stats. For each of us it is either 100% or 0%. So why worry about some number that may or may not apply to you.
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Stupidboob its hard to know what to suggest to help you as you seem to be suffering so much. Loneliness seems to be more of an issue. If you are not working is there a rest home near you where you can go and visit some of the elderly folk. Many of those ladies and gents are as lonely as you too and would appreciate somebody to talk to as many of them have nobody in their family visiting. They really appreciate someone reading to them or writing a letter for them or just talking to them. It's amazing how much you can help each other. Here in Taupo they even allow little dogs to visit as well as many of these people love animals and have to give them up when they go into a rest home. Many of them will become your friend and yes you may lose some of them eventually perhaps through illness or old age but it would be nice to know you have made their days much happier.
With regards to exercise, when it's warmer even walking around your pool against the force of water will be exercise for you. You will be surprised just how much and then when you combine it with swimming you will be well away.
As for diet change one thing at a time until you get used to it and then gradually decrease the not so good to something healthier. You don't need to do it all at one time because then you will get discouraged. If you don't make it one day then don't fret about it just try again the next day.
I too lost my mum at age 16 to ovarian cancer and I probably need her more now than I did then but I guess that is life. I've been blessed with two gorgeous daughters and a wonderful hubby and you have been blessed with your wonderful hubby and new little fur baby.
Sending you big warm hugs for a good day today.
Bak could just feel the pain you felt in having your port removed but so glad it's out and hopefully for ever.
Cat how are you doing. I think of you daily and hope all is going well. Still in your pocket love.
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Bak - I insisted on taking out my first port under anesthesia - so glad I did. I figure they can do that if they can do colonoscopy with it.
Stupidboob - thanks for the links, they were helpful. I hope you find something to lift your spirits.
Carol - I am allergic to the Tegaderm tape too. It gives me blisters so now it is in my chart that I am allergic.
waving HI - Cocker - thanks for thinking of me and staying in my pocket. I got my second Taxol infusion today. This week has been horrible. I was totally out of it for 3 days and couldn't barely pick up my head. I felt like I wasn't even in my body, pounding head, ringing ears, constipation, foggy head, no appetite, nausea, numb legs/feet, etc. I just started feeling normal yesterday, then got infusion today. I am hoping it was bad because it was the first infusion. I seem to remember that from when I got it before. Bad news today though. They didn't have enough tissue left from lung biopsy to test for a clinical trial I am interested in (CDX-011), so now have to have another biopsy next week - he wants to do it before lumps get smaller, but they actually seem to be getting bigger. They are going to do it on the nodes on the side of my neck because they are big and accessible. At least no chance for collapsed lung too! I told them they will have to heavily sedate me along with locals as numbing doesn't work good on me. He gave me scripts for oxycodone and valium. They will call me with a date/time.
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Oh Cat, you have to go through the biopsy again?! I'm glad you are going with heavy sedation. Let us know when your procedure is going to be. I wish you didn't have to go through that again, but if it can get you into that promising trial, I know you'll be strong and get through it again.
I have a question for you. Did you mention that your breast MRI found the spot in your lungs? I'm asking because as part of my surveillance, I schedule a breast MRI yearly, and so I asked my Onc if a breast MRI would be detecting things in the lungs/chest area and he said no, the breast MRI is of the breast. Did you have a particular MRI of the breast that also imaged further beyond that? Or did you have a follow-up procedure after a suspicious breast MRI? I do recall you also had scans, but I thought your recurrence was spotted before that.
Oh Cocker - that's such a lovely thought and idea - about visiting the rest homes.
I saw 2 interesting articles on the bc.org site as I was signing on - I'm heading back out now to read them.
Gram - Congrats! Smiling, thinking of your news!
Sending healing thoughts to everyone and prayers for continued success. (hugs)
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Cat, I'm going to try for the same trial. It's 2 1/2 hours from my house to the nearest one, but if I can get in I'd like to try it. I'm not even sure where to start regarding the information they need!
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Inspired - yes, they saw some suspicious spots in my mediastinum and lungs during my yearly breast MRI. They just saw shadows of the spots I think so ordered the CT/PET to take a closer look. I know I was surprised that they saw areas beyond the breast but maybe there are different MRI scans or machines? It was an "open MRI" if maybe that makes a difference?
Bluebird - my onc started getting me set up for the clinical trial. Since you have to overexpress the particular protein to get into the trial, the first step is to sign a sheet and send it with a tissue sample for them to test. As I said, they didn't end up having enough tissue from my lung biopsy, so now I have to have another biopsy to send some more tissue. Hopefully, they have kept enough of your tissue to send to them. They say it will only take 5 days for them to test tissue and let you know if you are eligible.
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Inspired one of the girls at work had a breast MRI recently for a suspicious area on the breast and it showed up she had lung cancer. Has just had a 3rd of her lung removed in the upper lung and is doing well.
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That's interesting ladies! I followed up with research and read that there is a difference breast MRI and chest MRI - however, the breast MRI can reach the chest wall and determine chest wall invasion. I had thought that, because when I had my u/s I asked my Radiologist what they could see, and he confirmed they can see behind my implants to the chest wall, he said it actually can look beyond that, but due to the air in our lungs, those images are hard to read analyze.
Cocker - Wow, your co-worker. I'm so glad to hear she is doing well. Does she have any restrictions or is she able to do all her normal things as before.
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We have questions that come up sometimes on each of these three topics, so I'm posting these new articles from breastcancer.org and their links:
"Low Vitamin D Levels Linked to Worse Survival" (Article: Published on 3/24/14)
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Inspired no she was understandably sore at first but you probably know your lungs are divided into three segments and she can easily live with the two portions that are left. They did key hole surgery on her although she was warned they may have had to open her chest right up and separate her ribs which might fracture them but she was fine I was worried about her because when she went for a lung biopsy previous to the surgery she had a partial lung collapse but fortunately everything turned out fine. She is getting stronger every day thank goodness.
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Gram I too am not interested in the stats. I've had surgery, had chemo, gone through the radiation and now want to move away from cancer as much as possible but still help the newbies and others if I can but not through stats only what might help whilst they are going through treatment and let them know what helped me as all these ladies on here did for me. To me reading stats cause needless anxiety and worry. If it comes back I will deal with it then. I still get anxiety if I have a test or scan coming up (which I do next Tuesday and anxiety has set in already) so I really don't feel I need any more anxiety to go with that. For me, I want to enjoy what time I have (little or long, who knows) and stats can't tell me that. What really helps me more than anything is like today, my family are all happy and well which is my major priority, I enjoy my job (most of the time), love all the girls I work with, the sky was a beautiful blue with not a cloud in sight, the Lake was like a mill pond, and the sun was shining all day and of course its Friday so I can catch up with a bit of tiredness tomorrow. That's what gets me through. Stats may help some people on here but just not me.
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Inspired thank you for sharing articles. It is so helpful.
I have a question if we have a lumpectomy then we have tests more frequently than if we have MX. Doesn't the constant testing keep it right there at the front of our mind along with the constant Dr. visits? I am coming up on surgery at the end of June so no surgery thread yet. I also have a while to talk to my surgeon and the plastic surgeon. I am pretty sure my recommendation will be for a lumpectomy still especially since I have had a PCR. I have been considering it ever since I found out they would have to shrink girl number 2 also. But sometimes I am not so sure. I realize final choice is mine and rest assured I will be doing more research and speaking with Dr.s also.
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Thanks for links, Inspired. I am very interested in the Radiation after mastectectomy article. I am one of those gals that had Mx and 3 positive nodes. 2 of the nodes were quite large (over 2cm). My tumor had lymphovascular invasion and a high ki57. At the time of dx and surgery I felt that I done my research and was comfortable with MO's recommendations for TX. And in 2009 the research said no radiation unless 4 nodes were positive. So I went with that and didn't question it further. A year or two later the new information came out about the good results coming out about thef 1 to 3 positive nodes having radiation. But for me it is now water under the bridge. I keep a positive attitude that chemo did its job because at the time that is all I had for treatment. Next month is 5 years for me. So far so good.0
