Calling all TNs
Comments
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Thank you Michelle,
Just want to point out to any ladies who are currently taking it or trying to get it that live near a Publix grocery store. It's FREE!!! That's right!! FREE!!! I was really excited when I heard that.
God knows between all the meds during treatment and all the supplements and vitamins afterwards, anything saved is nice.
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Suze: I am glad you checked in, and good to hear that you are happy with the hospice care:)
MBJ: It's so good to hear from you (((hugs)))
riley702: Good question, I had neoadjuvant also. We get staged twice. I did see a calculator online which allowed you to put in both stages to get a statistic, I think it was through MD Anderson.
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LuvRVing: Thanks so much for posting the links to Metformin trials. I am seeing my Onc. this Friday. I am going to ask him for Metformin. I hope he does give it to me, as I feel he is very interested to help me. Where can I go to check out the doses they are giving patients. I have read somewhere that the dosage is less at the beginning. Please let me know what is the normal dose for someone who does not have diabetes, although I have been having non-fasting sugar as 109 lately, which is a little higher than usual. I am hoping based on the non-fasting high sugar, the Onc.prescribes this for me.
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mccrimmon - I am sorry if I missed your prior conversation with Michelle, but what exactly is free? Do you mean metformin is free in a public grocery store? Please do tell us more if you are talking about Metformin. Thanks.
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Lovelyface - the clinical trial dose is 850mg twice a day. They start you at 850 mg once a day, then increase it after a few weeks, assuming you are not having any bad GI side effects. Metformin will cause some diarrhea, gas, tummy upset in some people for a couple of weeks. That's why they generally start with a smaller dose, then increase it when your system has adjusted.
McCrimmon's comment about "free" does relate to metformin at Publix. I guess there are some pharmacy chains that will provide certain generic drugs without any co-pay.
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Lovelyface. Oh, I never thought about "Publix" being misread as "Public" So sorry. Yes, I do mean Metformin is free in Publix, which is a chain grocery store in Florida and in the SE US. Sorry, I was the one who actually PM'd Michelle asking for the links again, so I apologize, I guess it was confusing when I jumped in at the end.
I just had my physical on Friday and my primary put me on it for weight loss even though my sugar was fine. He explained that since Metformin has not been "approved" for cancer treatment it couldn't be prescribed in that manner for me so he had to come up with a different reason. If you onc declines you, please try your primary, explain your situation and see if he can prescribe for one of the other reasons Metformin is approved for.
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I want Metformin now!!!! lol I asked my onc about it she said she was gonna study it and get back with me. I guess I should email her. If not I will ask my primary, cause I could stand to lose a few lbs..
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mccrimmon and LuvRVIng - thanks both for the wonderful information. I will let you know what my Onc. says this Friday.
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You will loose weight from 3-7 pounds per six month check-in. I have loss a little over 4 pounds. The GI issues in the beginning are pretty HARSH, but does ease up. My tumor markers went from 19.5 to 15.2, but that could be from many other factors, but I am hoping from the Metformin. That would be good news to us all.
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I will say that the weight loss tapers off after a while...otherwise, I'd be wispy by now! My weight has stabilized right where I need it to be, even though I take 2000 mg. a day. And I know a few diabetics who take 2000 mg and don't lose weight. So it's not a universal thing.
Fighter_34 - very good news for you!
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Any good dinner suggestions?? I am tried of the same ole same ole....
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Fighter, I keep thinking I'm going to check out some of the recipe threads, we're so tired of eating the same things over and over again.
Tonight is grilled chicken, brown rice and asparagus. BORING!!! but healthier than we used to be.
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I'm pretty scared right now. I've had a little discomfort in my neck nothing major but today it's really hurting when I move my head. Two big ole lymphnodes. I'm seeing my onc tomorrow but I know what I know. Man I keep saying it, this cancer is so fast. I'm anxious and scared to get my markers tomorrow. I always pray that I'm wrong but sadly in my heart I know that it is moving up my neck it's already jumped to my right side. I'm not sure if the numbness in my right hand is from the cancer or the chemo. My left hand is useless from the cancer I can't even button my jeans and it's not because they are tight I just haven't figured out how to do it with one hand. This pain in my neck today just brings me to tears. I just can't seem to stop crying. One minute I'm trying to make plans for spring but then I think what's the point. I was hoping the Halavan was still kind of working but it seems like it's not at all anymore. I was hoping if I could at least make it till spring they would come up with a new chemo. Oh man, I'm just so sad and angry. I've been trying to beat this ever since I was diagnosed. I had a month in a half break last June when I thought everything would be ok at least for a while. What I'd give for just 6 months pain free and chemo free. Hell, I'd love a month.
Well thanks for letting me share it just feels good to get it off my chest. I try and keep my positive cheery attitude and sometimes it just disappears for a minute. I'm so sorry if I bring anyone down.0 -
Laurajane I am so sorry you are in pain and scared. You are not bringing us down we are all here for you. You just keep thinking of spring. This will turn out ok for you I know it will. Just don't give up.
Annie xx
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LJ, you have absolutely nothing to worry about bringing anyone down. You have my entire attention and concern. Goodness, it sure moves fast, but I am still hoping the neck is just something coming from a wrong sleep position. Where exactly on the neck? LJ - are you taking metformin, I can't remember whether you had mentioned it or not. Is Halaven the last chemo you are trying? I sure hope your markers are down tomorrow. Is that how your doctor is monitoring you? I am so sorry that you are down today, but I can imagine where you are with this. It is very tough my dear and you have been doing so well with this mentally and emotionally. I wish I could take this away and make you feel good. I am so sorry but I feel so helpless. All I can say is that it is never the same every day. In some way or another things change, after every dark night comes a bright sunny morning.
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LauraJane, Please don't ever apologize. I'm so sorry your upset today, I really really wish we could all be together when one of us gets down or anxious. I'm with Lovelyface and CS thinking that maybe you slept wrong or something and you just keep on thinking about Spring! Why not start the metformin right now. What the difference between starting tomorrow or tonight. You never know!
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LauraJane - sending you gentle hugs. You are in my thoughts and prayers and have been since I started reading this thread again 2 weeks ago. So, so sorry to hear that you are still struggling with pain and are running out of options. Just wish there was something that I could do to help! ((Hugs))
I have been avoiding this particulart thread for quite some time.... Although I am TN, I have always felt out of place here because I have never been able to share in the Chemo experience (I was told I did not need it - even with a second opinion!) I always felt like I was just waiting around until I was told that it was back and nothing could be done! So far - I feel pretty good!
Then, I stopped reading all threads last summer, when I became a caregiver for my father who was diagnosed with throat cancer. After he passed away in September, it took a few months before I really started reading the threads regularly again. This is the last thread that I have caught up on and I can NOT believe the sorrow I feel when I read about Suze, MBJ and LJ's struggles. I really do now think that this really IS all a crapshoot!
Just wanted to let you all know that I am back and will be lurking regularly again - You have all been in my thoughts and I find that I really NEED to touch base with you ladies who are probably feeling the way I do, but struggling for normal! It is also great to see familiar names and to know that there is still a sense of humour here amongst the sorrow!
Although I don't post very often, please know that your comments and suggestions are wonderful, not only for the newbies, but for someone like me who has been living with a TN diagnosis for the past 2 3/4 years and trying to have a "normal" life - or as normal as I can make it! Thank you all for being here whenever someone needs you!
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Laura jane...you have never brought us "down"---ever. I have always looked for your posts. We all know the reality of this disease and pray for you and you family. You are such a great example of strength. Your positive attitude is contagious and we are here for your ups and downs just as you are for us. I hope that the pain subsides for you soon.
Maggie
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(((LauraJane))) sending hugs your way and wishing you some peace.
Ladies looking for recipes, come check out "So...what's for dinner?" in the Moving on... forum. We share lots of recipes and life experiences. It's a really good group of women and you will enjoy the discussion.
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LJ:
Sending you loving thoughts and prayers for some peace from this raging beast. You have fought so valiantly and long and always managed to be cheerful and optimistic. I wish there was so magic we could all perform, please know that if there was, we would all be using it for you. Never feel you have to apologize for anything you are feeling or going through. We, of all people on the face of this earth, can honestly relate to every word you say. There but for the grace of God go any one of us, so please never think that you are taking us down. The diagnose we all got at one time or the other, took us all down, certainly not you. As I said to Suze, I will also say to you, I will never give up thinking that something might yet be found to turn this around. Where there is breath, there is still hope - and I, and everyone else on this thread, will continue to hope with all of our might.
Linda
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((((((((LJ))))))))
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Laurajane,
Please don't feel you need to apologize for venting and being scared You have shown so much courage and strength during this awful ordeal.. We are all here for you.
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LauraJane-first of all, big hugs to you. Second of all, please always say how you feel, don't hold it in, as we are here for you. This cancer stuff is scary, and of course we are going to cry and vent, we deserve to!
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LJ- you could never say anything wrong in here. I think I can safely speak for the others when I say we all deeply care about you, admire you, think about you, pray for you... you are in all of our hearts in one way or another, of this I am quite certain. Personally, yours are the posts I seek out each time I come in here. I feel so helpless.0
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LJ - no apologies! I am so sad that you are scared. I wish there was something I could do to help. I really do.
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LJ so sorry you are having a bad day! Yesterday my neck hurt really bad and today nothing. I think I slept on mine funny so praying you did too! You don't ever worry about bringing us down. This is why we are all here to vent and listen and encourage! (((hugs)))
pinterest you can find really good recipes on..
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Laura! You never bring anyone down..you bring everyone up!
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Oh LauraJane, Love you girl. We are all holding you close.
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Is there anyone out there that remembers taking the contrast for the CT scan and the injection they give you. Plus how long before the contrast makes you go to potty. Mine is tomorrow and I'm freaking out again. Please help if you can. Annie
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Annie, if you are worried about the bowel problem some women have, only have liquids tomorrow, stick a imodium in your purse and ask if you can take it. It doesn't happen to me, right away.
Hope your scans go well - and that you get your results right away.0
