TRIPLE POSITIVE GROUP
Comments
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couchvicky - funny you should mention your dogs stretching. Every morning I get down on the doggie bed with Truman to cuddle him awake, and both of us do the "downward facing dog". He stretches EVERY time he gets up. Amazing.
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tld2017 - Yes, I waited after my BMX until Chemo. I waited 3 months after surgery for several reasons. One, I had a rough time recovering from Surgery - I have a skin disorder and don't heal well, and two - my MO terrified me about Chemo. I saw him 4 times, and each time he kept telling me "Don't worry about Chemo, you wont have any side effects" WHAT? When I asked him how did he know that, he answered "Because I'm that good". BullSh*t. Finally I went to a chemo 101 clinic and had a one on one with the Pharmaceutical MO and she told me the reason my MO said that is because of all the pre-meds that are given and SE's are usually minimal. If he has told me that the first visit, I would have started Chemo much sooner.
However, no one seemed to be concerned I waited 3 months. Take care! Hope you get your answers and are at peace - don't second guess yourself.0 -
Sheabela - sorry you got the shingles - again? I've had them 3/4 times, none since BC. I have Valtrex and Prednisone on hand to take mega doses if I even think its coming back. So very painful. The only good thing about going flat - No Bra, No itching, No rubbing. I hurt with a bra, I hurt without a bra before BC because of the shingles Neuropathy. Now Problem solved. Yeah.
Runny nose - all the time. Now, I have watery eyes. Like I'm crying. I guess its better than dry eyes.
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Hapb, no results yet from my trial. They are still accepting patients.
Shelabela, it's terrible you have shingles again, that sucks - hope you feel better soon.
Trina, I'm so sorry for all the pain cancer has caused your family. I hope you find the answers and support you need.
Runny nose - I had my last Herceptin 5+ months ago and I still have a runny nose although it is not as bad. My nose bleeds a lot and has been all through treatment. I too don't go anywhere without Kleenex. Just another annoyance I've gotten used to
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tld2017,
I really think that this depends on the result of your nodes. If there's no nodal involvement, no lympho-vascular invasion is seen, then I think the extra two weeks waiting is fine.
Also, it depends on the chemo regimen. After taxol, the first week was a bit hard, but then the rest (two weeks) were kinda like nothing happened. If you get AC or EC, that is a bit different. (I got both.) Meaning that with taxol, you can probably go and start the treatment, and enjoy the trip. Of course, no harsh sun.
Cold caps... unfortunately they are not available in my country in Europe. I would have done anything to keep my hair, for me, losing my hair was the hardest thing actually. BUT: as I later found out, they prevent chemo to get to your head. Her2+ bc's met areas are: brain, lungs, liver, bones. So honestly, I know that if I had done the cold capping, now I would worry more.
But I had an excellent wig, which helped me keep my situation a secret. If you need more info on that, let me know. I used that wig every single time I stepped out the door.
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rljes - you are experiencing "Taxotears", from the Taxotere - and it actually is caused by dry eyes. Try using a lubricating eye drop and it may help reduce the involuntary tearing. I found that I had more of an issue when doing things like watching TV or at the computer or reading because I was blinking less. Blinking helps lubricate the eye. The good news is that it usually stops when you are done with Taxotere. This drug can cause some scarring in the tear ducts for a small number of people, so if you have any concerns about that see your eye doctor, I have seen a very few who needed stents in the tear ducts due to this - but this is not common at all.
deni - sorry, I have forgotten, is your study NEOADAPT?
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I had my lumpectomy on Dec. 20, 2016 and didn't start chemo until Feb. 3rd. No one seemed concerned about that. By the time I saw my MO, I had already finished brachytherapy. Original plan was no chemo, just AI's. That obviously changed after the final path report came in. Before BC, I had scheduled a trip to the east coast to be with my daughter for some minor surgery she was having and I did that between rads and chemo. I'm very glad that my MO gave me more than a week to have my port "settle" as I have had no problems from it. Last Herceptin done Jan. 12th and the port comes out next week. (I wanted to get one more mammogram before I did that.)
I'd go on your trip, tld. Some who have had lymph nodes removed use "stockings" when they fly. I didn't need them so I can't offer more information than that. I did double up on the airborne while I was gone though. Travel on 3 airplanes and a train and time spent at Debbie's hospital but I came home healthy. Time spent with my daughter and my sister before starting chemo worked out well for me.
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photogirl and tld2017, there is NO connection between cold cap use and mets anywhere in the body. The chemos given for breast cancer don't reach the brain anyway, nor does the cold reach through your hair, scalp and skull to the brain. There has been some research into whether or not there is an increase in scalp mets with cold cap usage. Scalp mets are very rare anyway, and the research concluded that there is no added risk with cold cap usage. So please don't fear using cold caps! (photogirl, I'm sorry that they weren't available to you.)
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5 1/2 weeks ago, 39 days ago, to be exact, my world changed. I know no one who has cancer, much less breast cancer. And until I found all of you, I was very alone. I am grateful for all of the responses, all of you who have taken time out of your day to answer my questions. I will have more questions, for sure!
Just wanted to thank you, you are my heroes - you are fighters, you are who I hope to emulate. I read about each of your stories, drawing strength from your courage, from your tenacity. Thank you from the bottom of my heart. 0 -
Happy Valentine's Day Everyone!
We have lived to see another day of celebration.
I think I have caught up on the postings.This week DH and I worked on a business proposal and finally finished yesterday afternoon.
@Special K you write: I try to be kind, we never know what burdens people are carrying or how a small act of generosity can impact someone. I see this is you. I am sorry for the losses in your life.
@Deni1661 you write: I can sit on my porch and just listen to nature without feeling like I should be doing something else. I know! In addition, I don't feel guilty either.
@shelabela: About those shingles...I take a daily Valtrex (valacyclovir) for prevention. If I am going to get an outbreak, a small lesion inside my ear will start to peel. Then I go up to three pills a day. I will share that after taking the shot, my outbreaks are tolerable and very few.
@KimCee: Your tissue expanders are almost gone! Have you made a decision on your implants? WhippetMom has a great forum on implant sizing.
@Rljes: How about pictures of you and your doggie stretching? I bet that is cute.
@tld2017:In KimCee's words welcome to this "mutually lousy experience". To answer your questions:
There was 7 weeks or 49 days from my BMX to my first chemo.I panicked because I thought I had to start within 30 days.My MO wanted me completely healed from the surgery and time for my port to settle. I had 12 days for my port to settle before I started chemo.
Enjoy your vacation.I think if your MO wanted you to start earlier, he would have told you.
My DH hauled ice chests filled with cold caps in dry ice into every one of my treatments with Taxotere. I believe I would not have had any hair loss had we used dry ice the first time to freeze the caps. We thought "freeze" meant in the freezer. I lost about 40% of my hair. I did have my hair buzzed to make better contact. I later read that misting the head and changing parts helps with contact.
The caps are cold. They are freezing. It was worth it to me.
You wrote: 5 1/2 week ago, 39 day ago ... I urge you to find whatever blessings and positive change you can as you make this journey. I think that was what kept me from going crazy (not that I had far to go LOL).
Thank you all for your supportive words to me. I am grateful you wrote.
I guess I have learned that life was going on while I was making plans of how I thought life would be. Glad I got the wake-up call to start living. Wish I had learned this another way but I probably would not have listened.
Vicky
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I had my port put in, accessed while still under and my first chemo all the same day. No settling in period
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been so busy as my boy is sick. cant keep up so i will great everyone Happy Valentine’s Day!!oh special K i love your post on the changes you have had since BC.love you all
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Happy Valentine, everybody!
tld, I did not know anyone with bc either, this group became my lifeline. We got very close in my August chemo group and moved to FB, I believe I made friends for life. Please do not hesitate to come here for support, I know how it is when you feel that no one can understand what you are going through. Without these boards I would have gone insane.
During chemo I always been the youngest in the waiting room but now when I am doing rads I saw several women my age, we all have our hats compared to older ladies who still got their hair and only doing rads. I caught some glances, once I got greeted and greeted back but no one takes a first step and I do not want to intrude on someone’s privacy either. On the other hand what is it we can say to one another, all of us are just miserable. For some reason the worst part is when I park my car in front of the radiation facility, it is a smaller parking reserved for patients only, and when I walk inside the facility I walk by the taxi cabs and the looks the drivers give you, that I am much younger compared to the patients they usually bring in and pick up. Oh, well, that too shall pass. Hang in there to us both, hugs,Cherry
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I had one month and three days between the surgery and the start of chemo, I know that the surgery at least here is to be performed no longer than six weeks after the diagnosis, I am not sure about how long one can wait to start chemo.
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I have two questions:
Anyone who experienced sweet taste in the mouth weeks after chemo? I do and it has started four weeks PFC when I first thought, oh, it has been awhile since I cooked artichokes, they taste so sweet and even the peas, but then later I realized that everything tastes sweet and that it lingers after the mea, it basically does not go away, even water tastes like someone added the sugar. The sensation is mostly on the tip and sides of my tongue, it is like to teeth taste sweet. EC did not kill my taste buds, I could still taste salty food but now everything is sweet and it is not unpleasant, I mean it is better than bitterness but it still freaks me out. Appreciate any feedback.
My second question: I plan a flight trip in the end of March and wonder whether I should order any LE preventing sleeve? I only had three nodes removed and I have only recently found out ghat LE can come years after surgery, I thought if I did not get right after then I was safe. I do exercise and do push-ups and some lifting. When I am powerwalking my hands get swell because I swing them, but I had it even before the surgery and it goes away after the few hours. It is hard to say whether my arms swell because I gained weight. It could be the other way around that it looks I gained a lot if weight because I swell, I dunno. Anyone who developed LE years after the surgery? Anyone who did it after they took a flight?
Cherry
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Happy Valentines Day everyone! May your day be filled with lovely experiences, happiness and joy. I am blessed to be part of this wonderful group and appreciate each one of you!
A very dear friend of mine was just diagnosed with multiple myeloma. Sadly she is another victim of the horrible disease of cancer...the bright spot is they have caught it very early and my friend is a fierce fighter who has quickly moved to acceptance and problem solving mode. I shared KimCee's phrase 'welcome to this mutually lousy experience' (she got a good chuckle out of that!) and told her how supportive my triple positive community has been in helping me through the cancer journey. I hope she can find the same support I have received from all of you for her type of cancer.
Sorry to be a downer on this day of love but I needed to get this out and knew you can relate. Thanks for listening.0 -
Cherry, I traveled quite a bit after my mastectomy and recon surgeries and never had any lymphedema issues. However, my PT confirmed the recent shoulder surgery has disrupted my lymph system and I have pockets of swelling in my upper arm, side of recon breast, back and hand. My PT has been trying to move the lymph fluid through gentle massage. She said while I don't have lymphedema now, it can appear any time and trauma on the side where the nodes were removed poses a risk. Her hope is that moving the fluid will reduce the risk of lymphedema settling in. Time will tell I guess.
It seems difficult to pinpoint what might trigger lymphedema if you don't get it right away. I have several trips planned this year and I'm wondering if flying will aggravate the swelling I have now. I don't want to avoid traveling but am fearful of lymphedema popping up sometime down the road.0 -
Happy Valentines Day to to you all...
I turned 49 today and my husband got me some goodies and wrote a poem
. My son has been sick all week and I was before that, so I’ve not been very active. I’m sorry for your friend, Deni. Multiple Myeloma is not a nice one (not that many are ‘nice’). I’m glad they caught it early and I hope they can control it for a very long time.
I loved reading about some of the changes you all made. I’m waiting to be serenaded by our songstress! I took up felting and am taking guitar lessons. I needed to pursue my creative and musical sides. It’s so true that so many things just cease to matter.
Love reading all your posts, even if I’m on here a bit less often
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KB870, a whole year?! I was really hoping it will go away sooner than that
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deni, I am so sorry about your friend, and she is so lucky to have you around, it is so important to have someone to talk too. Sorry about your LE too, hope it will resolve soon. A friend of mine who has diabetes told me she has been using a dry body brash to massage her lymph system. Every day she massages her entire body from upside and down with this harsh brash. I have to start doing that, I always forget. She also said that jumping on a trampoline is good for the lymph to keep circulating. Well, a trampoline gets everything circulating in my body, even my stomach and what is in it.
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Posey, your birthday is on Valentines day? Oh, this is so sweet! Happy Birthday to you!! Wishing many, many more ahead! A poem sounds so romantic, he is so talented. You will hit this guitar class, write a song for this poem, perform it live and post a video for us)) But seriously, I wish you a bc free year, may it get out from your mind as well, we all deserve it, hugsCherry
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Thank you, SpecialK for that info on pCR and your succinct interpretation! I didn't know any of that.
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Happy happy birthday Posey...many many more happy birthdays.
Vicky...no decision, so over all of this. PS is the type that keeps trying in the operating room until SHE is happy. That is what former patients have told me. Love you...always got my back 😉
Deni...feeling any relief? Praying for you.
SpecialK, thank you. I am happy not to have the runny nose. I could do without the zits that pop up. I had hardly none through puberty but now I get them, grrrr.
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Hi ladies-
As of now I have great energy and strength but am mentally and emotionally partitioning my fears about upcoming Feb 22 3rd treatment of dose-dense AC. Ugh. But halfway done with that bad stuff, then a 4-dose set (every 3 weeks) of TPH (Toxal, Perjeta, Herceptin), then a month to recover and 5 weeks of 5 days a week of radiation, and Herceptin for a year. My MO is suggesting that, due to recent research, I take Perjeta for a year as well. Ugh. Not looking forward to a year of both, and to the side effects.
Anyway a friend just shared this link with me: https://www.medicalnewstoday.com/releases/316170.php suggesting that 9 weeks of Herceptin would suffice. Any thoughts, folks?
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i had a runny nose the whole time I was on Herceptin. It sucked. I think I now have stock in Kleenex brand. Lol
Kim, i had horrible zits when I was on Taxol. It was horrible. I had them on my face, chest as back. They slowly cleared up. I think it took 2 months after the last dose. Hope it clears up for you.
I am in a chill stage right now. No appointments until end of April, then we will meet with PS again and schedule my exchange for end of July. What will i do with my time.
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Shelabela, I hear you. What will you do with your time? Being triple positive s a full time job.
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Possey ... happy belated birthday.
KimCee ... get the girls you want!
Hap ... thanks for the article. It is "damn if I do and damn if I don't."
Shelabela ... As Suburbs writes, what will you do? Maybe rest and have some fun!
Vicky
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Shelabela enjoy your down time, you deserve it. Rest and do things you have put aside....the serenity will get your body strong and healthy for the exchange 😊
I feel the same as coach about Hapb's article.....it seems so much about treatment is conflicting. Same with diet, damned if I do or don't. This is where faith and living each day to the fullest and with a positive outlook keeps me sane
Kae I hope your son is feeling better
I am getting out tonight for dinner, yay! First time since surgery so I am making progress. Thanks for all the well wishes. Happy Friday everyone 😊0 -
My sister was adopted at birth. (we reconnected and are extremly close. we have the same mom and dad. Our parents got married after she was adopted and had 2 more kids) She and both her daughters live in a different state. So, we shared no eniviromental or eating habits. Her kids both got skin cancer before the age of 5. The doctors agree that because of their ages that sun exposer is not the cause. I have a very small immediate family. 8 out of 11 have had cancer. We are spread over 4 different states and our lifestyles are not similar. It just seems like at matter of time before we all get it. My genetics physicians dont want to give my daughters the genetic test because they are still young. They are worried that they may feel like their life expectancy is short. They don't want to hand a kid a death warrant. I was pretty shocked that they were so morbid. Ive been told we have an 80% of getting one or more types of cancer.
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My sister was adopted at birth. (we reconnected and are extremly close. we have the same mom and dad. Our parents got married after she was adopted and had 2 more kids) She and both her daughters live in a different state. So, we shared no eniviromental or eating habits. Her kids both got skin cancer before the age of 5. The doctors agree that because of their ages that sun exposer is not the cause. I have a very small immediate family. 8 out of 11 have had cancer. We are spread over 4 different states and our lifestyles are not similar. It just seems like at matter of time before we all get it. My genetics physicians dont want to give my daughters the genetic test because they are still young. They are worried that they may feel like their life expectancy is short. They don't want to hand a kid a death warrant. I was pretty shocked that they were so morbid. Ive been told we have an 80% of getting one or more types of cancer.
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