TRIPLE POSITIVE GROUP
Comments
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SpecialK - That whole cancer cluster information that you posted is very interesting. I've always wondered if something similar happened to me. We were stationed at RAF Woodbridge a year after the Chernobyl incident in 1986. Many people believe that the radioactive plume that passed over the UK may be the origin of mad cow disease. I lived there for 4 years and ate British beef (among other things). I'm still unable to give blood because I lived in the UK for longer than six months between 1980 and 1996. It makes me wonder.
We also lived near a nuclear power plant (Sizemore) when renting a house in Leiston, England for a year.
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TampaBayBucsGirl - It is definitely something to think about - I also wonder about all of the chemicals in use at any operational flying base. My husband crawled all over nuclear bombs in the B52 bomb bay during the 7 years he sat alert - then I washed his flights suits, so I was handling that material. Not to mention de-icing run off, among other things. I have a few friends who were stationed in Great Britain and Europe who can't donate because of their time there - when, and if, they develop a screening test for donated blood that detects Mad Cow that restriction will be lifted.
For all - as far as donating blood - as a former blood banker who administrated the units of donated blood and the patients who received them, I would discourage donating by all of us who have been diagnosed with cancer. We never know if we are in the midst of recurrence and it means that even at the five year point (declared safe by some blood collection agencies, including the one I worked for) I do not feel our blood is 100% safe for the sick, other cancer patients, anemic, injured, elderly, frail, newborns, etc. - who receive it. Imagine if your sick infant in the pediatric ICU needed a transfusion - would you want it to come from a "former" cancer patient? That is the yardstick I use, and there is a reason that we cannot donate organs regardless of how many years have passed. I don't believe anyone is tracking donated units of blood - by individual donation number - transfused where the recipient later develops cancer, the exception is organ transplant.
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Yes, and we shouldn't forget about Water Survival Training at Homestead AFB. LOL! My husband still talks about how he got dropped in the bay with all the pipe lines from Turkey Point. OMG, I totally forgot about the flight suits. Yeah, I guess we were all exposed to a lot of bad stuff over the years.
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Hap, enjoy it while you can; it goes away in 2019..
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Hap, you’ve posted before that airing one’s political beliefs are not appropriate here.
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Hap, I understand your frustration about medical costs from cancer, but that is not what I was addressing.
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Hap, I wasn't personally offended; my reaction would be the same regardless of the content. On any public board where people of all stripes gather it seems disrespectful to me when potentially polarizing comments are made.
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Today's tax reform is what it is. I'm glad that some (like HapB) have found financial relief in it. Our taxes have become so complicated (thanks, DH) that we've become a shoe-box couple who drops our stuff off with the accountant in February.
I hope that all who are still undergoing treatment can find relief and peace this holiday season. I will be visiting my parents in northern CT with my daughter and my (more peaceful) son, while DH stays home with my anxious and more aggressive son. I am so thankful that my oncologist extended my Ambien prescription by one month. I find it impossible to sleep at my parents' house without some help.
Many blessings to all!
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Thanks, Hap B, and enjoy your time with your daughter! I was so glad to hear that she would be spending the weekend with you. I will see my Mom, Dad, sister, brother, their spouses, and my nephews. Time with family is precious; I hope you enjoy yours! Heck, we might not be that far away from each other as my parents live on the CT/MA border (I went to high school in Springfield, MA).
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I just read through three pages and can't remember who posted what, but I will try to guess.
Cherry-you are correct that it just never leaves. I recently read an article somewhere, maybe the Army of Women site, where they had done a study and women with breast cancer basically had PTSD type symptoms many more years after diagnosis than was thought.
I kind of thought that this year was a little better for me, but I also feel that if I quit thinking about it, I will become less vigilant about potential issues. This one literally threw me right back into it. I really couldn't hardly focus. I have prepared myself for potential recurrence, but always figured it would probably be somewhere that your could take treatment and live ten years or so. Not 2-5.
Even though rationally, I know I could get hit by a bus tomorrow, or have a massive heart attack, that just doesn't have the same effect on me, maybe because it hasn't been a reality. I don't really know the reason, but wow, it as bad.
As far as if I am comfortable with the diagnosis...I had the followup ultrasound today. Same tech as a week ago. I went through this whole past week with her and asked how her first one could have something that has a potential dismal reading. She said ultrasounds can pick up weird things that can be the way something is laying etc. she was so apologetic. But she said that the CT scan is what to go by and it was good. So I am better there. Ultrasound today shows thyroid slightly enlarged but nothing really in particular. Maybe the start of a goiter (such a gross word lol). Just going to watch it.
Expanders-whomever mentioned them....ugh, worst things ever...but if I was ever going to have stripper boobs, that certainly did the trick. I rarely work a bra. I had some tanks that had the bra lining in them and they worked great. Wore a really soft surgical thing at night too.
Hapb-I noticed you are just doing hercepting with no chemol Is the becoming more common now? When I was diagnosed, it was only given with chemo because that was what the studies were based on but they were looking at the potential of just herceptin.
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fluffqueen, once again I am glad that it turned out to be nothing and hopefully will continue this way. You and I have the same stats, approx same size if tumor but I have done lumpectomy, and I asked SpecialK once about your exact stats when I was at crossroads whether I should add another chemo regimen to my treatment or just do weekly Taxol and Herceptin. I decided to add EC, Ellence+Cytoxan, because of my age and high KI67, the oncologists at my clinic said that we can try even this. I will resume Herceptin in February, I have already done weekly Taxol and have the last EC infusion left. What I am trying to say, since we had the similar tumors I took your post about the enlarged node almost personally, I know, it is crazy but I am still new to this and this EC regimen is really tough. Have great holidays!Cherry
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KB870 is so right.
It is hard for me to believe what a difference a year makes both physically and emotionally.
As for the cost of cancer, my insurance has been billed over $800K. I stayed within network except for one doctor who agree to my network's payment so I have been fortunate with my out of pocket expenses. Early in treatment, I asked the nurse on my Oncology Team why I wasn't scheduled to see anyone before treatment. She said most people can not afford seeing the doctor and treatment so they limit the doctor visits. I didn't know.
I went to the dermatologist yesterday. I am still having difficulty with my nails growing and I think my rosacea may be coming back. Chemo gave me great facial skin. She prescribed the following:
NUVAIL NAIL SOLN 15ML
SOOLANTRA CREAM 45GM.
Both are somewhat new products.
Merry Christmas to all.
Vicky
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Fluff - so very happy to hear your good news!
rjles - your dog is so cute! Your picture brought a big smile to my face 😊
Posey - thanks for sharing such a wonderful testimony of how God brings people into our life to provide comfort and inspiration. I feel that way about everyone in this group!
Bjquilter - this is the best place to express what you are feeling. Let it all out, it's not good to keep frustration or negative thoughts floating around in your head. We've all been there and we're all here to support each other.
Shelabela - so happy to hear you are doing well. I hope your recon surgery is soon so you can get those expanders out.
Hapb - enjoy the holidays with your daughter. There is nothing I like better than time with my kids or grandkids, they lift my heart and bring such joy! Thanks for recommending the PBS show on cancer, I will look for it or get the book. I LOVED the grinch pic!
Coach - you always manage to post a message that lifts my spirits. Today I had a down day, just really tired and all my incisions from revision surgery were more bothersome than usual today. Started feeling sorry for myself because healing isn't going fast enough, my house is a mess, blah, blah. But your post reminded me that on most days I am in a better place than I was before diagnosis. I have more gratitude in my heart, a healthier perspective and so many new friends that bring great joy to each day. There IS life after cancer and despite the setbacks we all experience, we will move forward to the brighter days sure to come.
Elaine, specialk, cherry, KB, lita and all others - may you all have a very Merry Christmas and many blessings in the new year!0 -
I did not get a Christmas tree either but also thinking I should get one tomorrow...:) Last Christmas I was in the hospital getting my mastectomy. This year I am all done with treatment, my hair is back, I work again and I am feeling pretty good..:) so yes, folks it does end! Maybe for that reason I will drag myself up and buy that tree in the morning...:) Wishing everyone as happy holidays as can possibly be wished!
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hap - something I did for my mom was to get a pre-lit tree 4' tree from the craft store (Michael's or Hobby Lobby have them), and select her favorite ornaments, and wire them to the tree with fine wire. That way she could just put a garbage bag over the tree and store it until the next year. When the holidays rolled around again, all she had to do was take the garbage bag off and plug in the tree. Made things easier! Maybe a small pre-lit tree would be a good compromise. I am a total weirdo and have 5 trees - but four of them are the 4' size - one is vintage pink and turquoise, the ornaments are from the 50's and were my mom's, one has all the ornaments my children made or received from teachers and grandparents, one is red, white and blue with all our military ornaments and ones from the White House, the outdoor one on the lanai is nautical with starfish and all silver and gold, and a big 10' slim tree in the living room with lots of glass and red and green and more rustic ornaments.
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Thank you Deni1661. I appreciate your kind words. My yesterday took a turn down a little. The NUVAIL NAIL SOLN 15ML is $500.00! It is not covered by my insurance. When our pharmacy called, I asked if it came in a big bottle. He said "the bottle is so small that you are going to be really made when you see it." I didn't get it. I will look for an alternative and be grateful that I did not have nail lift. To the person who has no hands, my raggy nails would be a gift.
I implement the 5 minute rule for housecleaning. Before I leave a room, I give it a 5 minute pick up / cleaning. My home is not spotless like before diagnosis but it is presentable. DH bought an I-Robot. It has really helped especially with the dog hair.
Hap ... yes there is so much more to consider that just treatment costs.
I think we are normal and not weirdos, SpecialK! Get the TREE ladies! We sent our nephew in Afghanistan a 4 foot pre-lit tree along with some ornaments. This size is cute and festive. I have 2 on each side of the fireplace. So far I have 3 trees up. We get the big on 23 December and decorate 24 December. Think of all we have to celebrate this year!
Merry Christmas.
Vicky
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So it feels different. My breast, that is. Emotionally, visually etc. The stitches are out. I feel good, just different.
I am 5'1" and HAD breasts that were D's, when I walked in a room, (unfortunately) my breasts were the first thing that entered and the first thing (I feel) that people noticed about me. I always layered my clothing so that my large breasts would be less noticeable. I wore a well fitting bra, a snug cami and sometimes a light tank under my shirts.....I strapped those babies down so they wouldn't bounce. Intelligent, hardworking and determined and yet a dirty blonde with a strut and large breasts is what they saw. I have lost 8 lbs since dx, and I have a new breast. I look at it and this is the first time I feel a loss. Why is that? Why didn't I feel this way after the mastectomy and only feel this loss now?
I feel less, not me....not because of the scar, because it's just a scar. I don't feel like this (body/breast) is me (mine). Any suggestions from you all who are passed the MX and have the implants now, did you feel like I do now? What did you do to in order to move past this feeling?
I am feeling more emotional, could it be the Letrazole? Could it be a snowball effect of all of this? I am interested in hearing your responses because I am ready to move past this.
Melanie
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I am sorry, Melanie, that you are hurting.
Please take a look at this site: https://grief.com/the-five-stages-of-grief/
The 5 stages of grief are:
- Denial
- Anger
- Bargaining
- Depression
- Acceptance
I will share that getting to this stage on your journey is a great step. It is normal and predictable to grieve. You have lost so much more than a "breast." For me, I lost the safe life I once knew. The next step is up to you. You can get stuck where you are or work to acceptance.
Yes, I have been where you are. One reason I got skin nipples is that the new ones didn't feel right when I showered or DH touched them. I asked DH if he missed my old girls. He said no. He reminded often (when I was were you are) that my breasts were killing me and how great my new ones look. That is what got me to acceptance. These breasts are mine ... bought and paid for. And they won't kill me.
I also reflected on how my life has changed for the better since my cancer diagnosis. I feel free to do all the things I wanted to do but previously held back because of "obligations" (mostly work and owning a business) and such.
You will get pass this. You are stronger than you think.
Keeping you in my prayers.
Love, Vicky
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hap - I would bet that the small pre-lit trees are on sale this close to Christmas, which would be extra nice - and maybe it will help lift your spirits and you and your daughter can decorate it together!
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Hab B - I have a small 2 ft fiber optic tree that is just perfect. Plug in and go. I can leave it on 24/7. And I put some small lights in the window - strung haphazardly - nothing big, but added a little cheer without any effort. Hope you can do the same.
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Thank you Vicky, I looked at the site that you mentioned, it's a good reminder. I do well usually but, maybe it's because the breast is finished, it's done and now I need to move on to something else. Phantom 'emotional' loss if that makes sense...I feel like it should be there, it was mine. Time, it will take time.
HapB, Letrazole may be part of the culprit, I cried hard at Walmart over the song by John Lennon 'So This Is Christmas' (what have you done...I fought freaking cancer, that's what I did). I have written that down as a SE as Vicky suggested a while back.
KB870, Hopefully with time my emotions will go back to a better level!
Thank you everyone for your thoughts on this.
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hap - glad you got a tree! Yay! Most oncologists do take funding from pharma, but they also participate in drug trials with these manufacturers, and they also have to report even the lunches the reps provide to the centers. I don't find it problematic that mine takes funding, I feel it helps him stay on top of what is new and upcoming.
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Hapb - I'm so glad you got the tree. It will create a festive environment for you and your daughter. Celebrate being together!
Coachvicky - sorry the nail solution didn't work out, it sounded so promising. The price is ridiculous.
Melanie - I did not feel a sense of loss like you're experiencing. I was happy to be rid of the breast that could kill me. I am small so I was never attached to them to begin with. I am not quite sure how I feel about my new breast but I think that has more to do with being sore and uncomfortable from my recent surgery. Although sometimes I think my body will never "feel" normal again. I have had constant tightness in my stomach from the DIEP and soreness on my left side under the reconstructed breast since May and I don't like how it feels. I have read that it can take up to a year for this to go away. I think it does take time for us to get comfortable with our new bodies and what you're feeling is part of the process. Hang in there, ((hugs))
I am on Letrazole too and I am starting to wonder if that has something to do with my occasional mood swings. I've been really crabby the last couple of days. I blamed it on being cooped up with my husband for the last 3 weeks but maybe it's not him.0 -
deni1661, I am having the same side effects from Diep 2 surgery. Surgical tape, bandages, gauze, and other wound treatments are part of my daily routine. And yes, it does get you down. I dream of a future that includes bubble baths as it's been almost a year since my last. It's depressing. Who would voluntarily do fat grafting and lipo? Not me!
Chemo first makes surgery second even more of a challenge. I am glad I had no clue the healing process would be so difficult. I was so broken and down at the end of chemo, I might not have done the immediate recon. Then again, I avoided radiation so I should count my blessings. I am an expert on bandaging wounds. Thanks for listening.
I hope you recover soon.
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deni,
AIs definitely cause mood swings. I was worried about taking Aromasin since I'd always had problems with hormonal changes during PMS and pregnancy. Sure enough, three weeks after I started Aromasin, I was feeling exactly as I did when I was PMSsed. My MO put me on Celexa, and I feel much better.
HapB, have fun with your daughter!
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Yeah HaPB! Even little things help
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Suburbs - Did I read you right that you are passing on Radiation? I am planning on not having Radiation as well, since I have skin diseases. Was this your idea or your RA? (if you don't mind me asking) My RA wants me to go ahead after chemo, but I just don't think its worth it. Did your RA give you any stats that Rads would change the chance of occurance? Thanks -
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Rljes, radiation was not recommended because my nodes were clean and I had a complete pathological response to TCHP. When the pathology came back, no cancer could be found. I'll never know about my nodes because I did chemo first.
Standard care would be radiation if you had a positive node. I think someone else could weigh in on the statistics as I am not informed at all about radiation. That's a very personal choice. I wish you the best in making that decision.0 -
wow, miss a day or two...I am so behind.
Hap..enjoy your tree and your daughter. So glad you got the tree.
Rljes, I am not having radiation either. Same reason as Suburbs mentioned. However, my oncologist said that had I had a consult with a RO, the RO would provide rationale that would support it. I just don't think the benefit would outweigh the risk. That is my own opinion.
Deni, sending you hugs for a speedy recovery. I can't even imagine. I am whining over expanders...and I am truly not a wimp. This all totally stinks.
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Suburbs ...
For what it is worth ... I became allergic to tape. I would break out in a sore rash after a day or two and have to find another place to tape.
I wore tube tops instead of any type of bra during the day and a surgical vest at night.
I took a Carefree thin pad, place it against the wound and the tape side against the inside of the tube top or surgical vest. No more tape on my skin.
When my Plastic Surgeon saw this, he thought it was cleaver but warned to ensure I was using a "pure" material next to my skin. I didn't fully understand that b/c I found nothing "pure" about tape. To be safe, consult your medical team to see if this would work for you.
Vicky0
