Starting Chemo September 2015; join us!
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Might as well can veggies too and not just fruit. That brocoli you love is chalked full of vit C. Veggies are big with vits. So what else is there? We had a similar chat on the bacon thing and it causing cancer. Kind of the same thing here, imo. I think I'll grab me some bacon now. I just made myself hungry for it!
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Exactly Southern. So why feel shittier than you do when chemo isn't even in your body anymore to interfere with?? Maybe stop the day before. I mean it's daily vits so you want it not in your system for when chemo is there...
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I'm basically in a nutritional wasteland until chemo is done, but I just have 12 weeks. I know others are in treatment for much longer so your body needs more support with that.
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I had 2 chemo teach classes, 1 when I was going with Sutter Health and the onc there and this one where I am now. Both emphasized nutrition. And it makes sense. Your body needs the energy/power to fight cancer. It's not just the chemo. It's both. So to say I'm not going to worry about it until after imo you're shooting yourself in the foot. Help yourself now.
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I didn't take vitamins before getting bc, and was not advised to not take them once I started, but I did think they ask me if I took any at first intake. The MO did put me on prescription strength Vitamin D after seeing how low my levels were.
Octogirl
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in NY Obamacare networks do not include a lot of doctors and does not include Sloan.
I shudder to think of where I would be receiving tx and the quality or lack thereof if I had Obamacare. But that's NY.
We opted for COBRA while I'm out of work.
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It's the same in CA. Not everyone takes Obamacare even if you have a PPO plan. I'm very fortunate to have found the best doctors around the corner from me who do. You have to actually call offices to see and not rely on what the insurance website says because it's not always updated. Docs don't report changes to the insurance so the websites tend to be wrong. This is especially true this time of the year where contracts are being renewed, or not, for 2016.
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southern - ditto what el Tigre said. Mine was from Amazon, I looked it up in my past orders it says Milano collection "wigigrip" wig comfort band. It was 19.74 helps me tolerate the wi
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IJcic/- what kind of work do you do? Did you say third shift? And you support your son and family? That's a lot on you.
Minnesota- I opted for bilateral because I prefer symmetry. I opted for no reconstruction because I didn't want foreign objects in me. For myself, I've been happy with the choice.
Southern - I take a prenatal vitamin. They took me off feosol iron and had me take the prenatal with iron instead.
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I'm also chocking down Ensure high protein shakes. Not exactly the best tasting, but the vits and minerals with the protein in it came up as highly recommended for those of us who aren't eating right as well. Wheatgrass in juices is another thing that I've heard former cancer pts say really helped them with their compromised immune system during txs. That however I can't get into. Tastes horrid imo. But ensure high protein I try to remember to gulp one down a day.
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Sorry that I keep harping on about my lymphedema, but if sharing info with you will help avoid, recognize, and treat it, irritating a few of you is worth it. This forum has its own Lymphedema forum with over 150 discussion threads. Here is an excellent series of photos --- but do not wait until you look like this. Often the first sign is heaviness or aching in the inner upper arm, which docs/other health caregivers often dismiss as post-op pain (as did mine):
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Also, this is an excellent site for LE (lymphedema) info started by some of the wonderful women on these very forums --- especially preventive info! Wish I had found this before my operation!
http://www.stepup-speakout.org/
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Sorry it took me so long to get back to you guys. I have been struggling with a long day and trying to figure out my future. Well, put AC#3 as finished and in the books! I decided to be more positive this time despite the problems I am having. I even blew my budget and went to the cafeteria and had a grilled ham and cheese sandwich (the man across the counter said he didn't normally offer it but he would make it for me). I brought my own apple juice because they hardly have anything there to eat on- it leaked on my blanket. They took my chemo off the schedule because they weren't sure I would be up to it. I surprised everybody by eating and drinking before chemo. I'll have to improvise for food for awhile. I was a little talkative. Oh did I say I took an Ativan before the red stuff came out. I was talkative because of the decadron and then got sleepy when the cytoxan was put up. I had to stop a couple of times because I felt like I was drunk driving. I got home safely. I won't do that again. My hair has only thinned in the crown but it is stuck to my head like it is holding on for dear life. End of the good.Now the bad- since now I am feeling positive, my MO has to decided that I need an ultrasound that may push me into Stage IV land. His nurse says, "'if it is something, there is a chance we can keep you alive for a decade or more". My MO chimes in, "But with your ethnicity, your prognosis will drop to approximately 12 months". From positive to in a hole, in two minutes. My right kidney needs an ultrasound because I have a thing that is hanging off it. I pray that it is just a cyst but it could be renal cancer. My MOs eyes lit up when he said it just like when a fat kid hears the word cake. The ultrasound is tomorrow so I'll know pretty soon if I have to leave the group. It made me cry. And even if it is a cyst, it means surgery.
Now the ugly- I have had phone calls and letters from my insurance company pushing me not to go to the emergency room. They are not happy with me. They questioned me about my need for ER care and who told me to come. They have sent me letters encouraging me to go into Hospice, "where they can better manage my needs". They have threatened me with cancellation (kind of funny - I am so poor Medicaid doesn't want me).
I too have been thinking of a bilateral mastectomy after things settle down. I just don't want to ever have to do this again. When I was first diagnosed, they thought the tumor was only 5 mm big, my ex-boyfriend was telling he wanted my boobs, and chemo was not on the table. Fast forward to 2.8 cm plus 3.5 cm of DCIS underneath it and some hyperplasia mixed in, I just want it all off. And this is the breast that had calcifications surgically removed when was in my 30's. I can't even imagine what would have happened if that didn't get that done. Nothing showed up on mammogram until a year ago and then advised to wait 6 months. Here I am. So I really don't trust what might find in the other breast over time. I hate Pet Scans. They pick up benign things and bad things alike. I know my "social life" is over. No man will ever want me again without my DDDs so if I have to have a shortened life, it should be in peace. I have decided, once this is over, I will sell the contents of my mother's house and estate and move away. It is too much work and I hate her house.
But AC#3 is in the rear view mirror! On to the side effects- extreme fatigue and the nausea is rising!
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Hazel, ironically or not, I work in Pathology in a hospital. I've been doing that for more than 40 years.
Wow Grey. Remember You are not your boobs! Nowadays even if you had a tumor in your kidney, they can remove just part of it and if they had to take the whole kidney you can live normally with one. Some docs like you tell you the worst scenario. ButI believe that our attitudes have a lot to do with our prognosis.
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I agree! Your attitude effects your outcome. We aren't dead until we are and no one should give in to that stinking thinking!
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Sorry Grey I don't mean to minimize how you feel. That's not my intention.
Believe me, I have my "down" days too. I'm just saying Life, that is what is most important.
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Grey - Congratulations on making it through Round 3. Very positive thoughts for your pending scan and results. We are in your corner and cheering for you. Hang in there and thanks for the update. <<<hugs>>>
Tessu - Go for that movie! It's great that your husband is helping out. I used to love cooking every evening and haven't prepared dinner for the two of us in months. I'm enjoying a rest week surge of energy at the moment and plan on making us a simple Swiss and bacon quiche tonight.
On vitamins... I was given no caution on vitamins. My MO shrugged when I mentioned B vitamins to minimize Taxol neuropathy. She said "There's no hard evidence, but B6 can't hurt." Mostly my practice seems concerned that I'm eating and not losing or gaining a significant amount of weight.
On finances and insurance... I'm in Artista's situation: relatively low income qualifies me for an ACA subsidy. Like her, I'm also lucky to have good local providers who accept my plan. I'm grateful ACA eliminated insurance companies' ability to deny coverage if you have a pre-existing condition (which I had even before BC). I feel for everyone struggling with money issues; BC is more than enough stress in our lives right now.
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Grey, I do think that thinking positive helps, when we can. But as I think you realized with the eating and drinking, sometimes we have to take care of ourselves and be our own best advocates.
So a few thoughts: first of all, yay and a big CONGRATS to you for putting number three in the books. You did it!
Second: all stages welcome in this thread and whether in active chemo or not, so no matter what they find in that US, stay with us, ok?
And most importantly, are you comfortable with what your MO said about ethnicity? I wouldn't be. Indeed, it is unusual enough for a nurse to lead with a prognosis that I wonder if she saw it coming. While I haven't followed the research closely, you should read up a bit. It may be that the African American women who don't do as well aren't getting treatment. Or it could be that your MO isn't really up on the research in that area. And the underserved are also understudied. I'd ask him (her?) why he said that, and I'd tell him you don't want to be under treated or treated like a number. Part of being positive is being your own advocate. While you are at it, I'd take him the letters you are getting from insurance about the ER and ask how his clinic can do better to help you avoid that happening.
I know it is so hard being alone. It is easy for me to say all this: I am white, a member of the privileged class, and have been my entire life, and I have a strong (albeit small, cause I keep it that way) support group and hubby comes to every apt, I wouldn't dream of driving myself. You are so strong, and believe it or not, I can see how your strength has grown just in reading your posts over the months. Every time I see a new post fro you I am glad to know that you have come here to share, and that this feels like a safe place to do so.
We are here for you. I am here for you. Yeah, I live across the country so can't offer to drive you anywhere, but keep at it, and please feel free to send a private message anytime.
Sending lots of love and lots of hugs and in your pocket for the tests. Let us know how it goes.
Xoxoxox
Octogirl
Ps edited for chemo and steroid brain edits. Geez...I said years of posts when I meant months. It only seems like years, right
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happy Wednesday ladies. Waiting to see mo for 2nd dd taxol infusion. This makes #6/8 of total chemos. After today I will be 75% done and have 2 left. I still don't want to go but no crying last nite about going just so over it and the whole thing.
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I've been meaning to post this for a few weeks. Like most us, I hate the "pity stares" and have coped with many.
In a "feeling half-way okay" day a couple weeks ago, I made a solo Costco run. There was a single man ahead of me in line. I could tell he knew the cashier. They had a serious, hushed conversation for maybe a minute.
Once she started ringing me up (there was no one behind me in line), the cashier apologized for the delay. I said "No problem" and she explained she knew the man and his wife. The wife had just been diagnosed with Huntington's disease.
I said "I have cancer and I know hers is a very tough diagnosis." She engaged me with sincere, caring questions about my cancer. "And look how positive you are," she said toward the end of our brief conversation. She gave me a hug and has given me updates about her friend during subsequent visits as well as asking after me.
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random aside--on the list of things folks should have when getting chemo, we should add nice junky magazines in the bathroom for your time spent becoming one with the toilet (for c or d). Just stocked up last week and has been much less upsetting to be stuck in the bathroom
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Pesky spiking temps just won't give me a break. One antibiotic not working so now call in to MO for another suggestion. I'm sick and tired of being sick and tired. I've had worse colds in my life and this one seems mild but it did coincide with my first taxol infusion so who the hell knows why I'm such a mess. Joint pain to the extreme on the weekend (neulasta I'm sure helped that) means I was one sick puppy. I guess I'm getting used to it as I'm just muddling through.
This is my "off" week so I'm hoping I will be fixed up for my infusion next week. I'm at #5 of 8 and I'm seeing that light at the end.
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Lindy-sending fever and pain free thoughts. What a positive attitude you have in the midst of feeling crappy. My beanie goes off to you!
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Shopgal- thinking of you today. Good luck with taxol #2. May it bring death to cancer cells and minimal side effects to you. You can see the light at the end of the tunnel now! May that light help ease the final few weeks ahead. We are all cheering for you.
Lindy - you are I are next week. Sorry about your spikey fever. I had such a runny nose after taxol #1. That, with the aches made me think it was a cold. Now I think it was just no nose hair runny nose. Doesn't really matter because it felt the same. No fever though, thankfully. Hope you feel better quickly.
I'm starting to lose my eye lashes and brows 😩 have heard they grow back quickly. Yes???
Hugs to everyone. You are all in my prayers.
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Grey- I feel you on the possibility of stage IV. I'm in the same boat with the spot on my bone "unlikely to be cancer" and not knowing if the nodule in my lung is or not until after chemo when they see if it's gone or not. We'll get through whatever is thrown at us together, good and bad. And I don't think anyone here wants you to leave this group IF you are IV. I know I don't. You're my buddy, another person with minimal to no real life help so I won't let you leave.
Try and stay positive. Focus on the good news. That's what I'm doing, good news no one has told me I'm stage IV. I hope we are both in the clear but if not, we'll support each other here along with all the wonderful ladies here.
And good on you to treat yourself! Sometimes it's the little things that makes all the difference in the world that those without cancer don't get. But we do.. xo
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No one told me not to take multivitamins and I've been taking them for years. Last night I added a B complex and one l-glutamine capsule in hopes of it helping to prevent neuropathy. I will continue with those from now on. Basically, my MO said it wouldn't hurt and might be helpful. One good thing about the weekly lower dose of Taxol is that I no longer have to get the Neulasta shots. They were a bit rough and the Claritin didn't seem to help me at all.
Finances are tricky, even with Medicare. I was fortunate enough, or poor enough, to qualify for significant help with all the hospital charges. Medicare is covering most of my expenses but I do have to pay a small share for lab work and external diagnostic services. So far it's been relatively manageable.
It's a shame we don't just have single-payer or Medicare for all like most civilized countries have. Administrative costs are the lowest and they can negotiate pharmaceutical prices. I don't appreciate paying for an insurance company's CEO's bloated salary, which I did for many years before I became eligible for Medicare. Especially in the old days when they could deny anyone coverage for the flimsiest of pre-existing conditions. Teenage acne? No insurance for you!
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I don't think it will change anything SouthernCharm. (Although I could be wrong). There's no evidence that you do have heart disease. But having breast cancer and getting treatment right now trumps everything else.
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