TRIPLE POSITIVE GROUP
Comments
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HapB,my MO will not do anything other than physical exam.but i have spoken to my PS to do MRI since i will have BMX and implants over the muscle.also, my PCP is willing to do a Pet Scan.of course, these will all depend if my insurance will approve the scans.My PCP is very involved in this journey and i will ask him if it is advisable to do tumor markers.
SpecialK, i am taking probiotics.
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I think my time here is done... don't do drama ...
HapB I never said if you don't have a positive attitude then your sx get worst. or your a bad person .. in fact ..NO one has...
a persons attitude is just about the only thing we can some what control in this uncontrollable situation .. our bodies and mind can and have betrayed us ... some of us can try to hold on to the one thing that cancer can't touch... is our attitude.. and even some days that gets tested..
I don't need someone putting words in my mouth, thank you very much ...
HapB I hope you get yourself strengthen out medical wise..... everyone deserves happiness and their life back after this hell ...
To everyone else.. be blessed and thank you for the info and the love ...
I hope everyone has many years of happiness.. and Blessings on your journey ... -
hi Denise,
I don't believe Hapb was remotely referring to your much earlier post; she was directly responding to Sooz' post and her comments - not yours at all. If you feel it's time to leave the board, then that's totally fair and right for you. But I'd hate to see you leave due to a misunderstanding. You seem very supportive and caring, and so does Hapb
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Hey everyone, lets just hang in there together!ย We are all going through so much and I do believe the chemo taxes our brains, our bodies and our emotions.ย Our brains are chemo'd out, our bodies are weakened due to SE's and our emotions run high...there is also sorrow and disbelief and of course crazy humor at times.ย ย I absolutely believe that we are all trying to help and encourage each other and this disease makes us more vulnerable.ย One thing that I hate about the internet is that we can't see the creases around our eyes when we smileย or even the smile on our faces.ย How about the tone of the voice, I love to hear a persons voice, the internet does not allow for that.
****My smile to you all for today to make you smile:ย ย (a short note that I sent to my friends/family about Chemo#2 the other day)ย
Can you say STEROIDED UP? Is that even a word? My poor, sweetย daughter (who is not a morning person) listened to me non-stop talk yesterday on the way to chemo (I may have seen her wince).
All went well, Benadryl infusion slowed down my yapping, but not my mind. Last day of steroids till round #3. I feel very energetic, very energetic. I promise my kids not to do anything too risky today....like chop or dice any food by hand with a knife! Their smiling now and hoping that I keep my word. Today, I still have all of my digits ladies!ย
ย We will get through this!ย How about lets do it together.ย
ย Melanie
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Hi
2 weeks after my last chemo and I am feeling pretty good. Still very tired but that is all. I have 3 weeks till surgery and I have been working on building my immune system up. I have gotten some great advice in a personal message (Thank you!) I will have TE put in as I will have to have rads afterwards. My PS wants me to do DIEP reconstruction so I have been researching that a lot. There is a lot to that surgery. But it looks nice when done. What are you ladies thoughts on DIEP?
I hope all you wonderful ladies are having a great day! If you had chemo this week I hope that you have little to no SE's. Where every your are in your journey know that you are not alone! We are here!
I just want to comment about the positive attitude thing...... I do not think having a positive attitude can "cure" you or change the results of chemo and all this but I think that if I had not kept a positive attitude through this that I would have a horrible time. I tried to stay upbeat for myself and no one else. It is a personal feeling. Hugs to all that have gotten their feeling hurt here lately.
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Denise,
I drank plenty of fluids and still ended up in the ER with dehydration. They said sometimes the fluid we drink goes right through and doesn't reach a cellular level. After that I was scheduled to go back to infusion center for fluids 3 or 4 days after each treatment. Felt so much better doing that. Ask to go back for fluids if you feel crappy after the next round. Good luck with the rest of your treatment.
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shelabela,
Good to hear you're recovering from chemo. I have often thought that if I recur and do a BMX that I would consider DIEP. After my twin pregnancy, all of my weight gain ends up in my tummy area, so there's plenty of fat to use. Plus, you get a tummy tuck in the process! But, I would have to have the time to devote to surgery and recovery, and I still work full-time and have the time-consuming twins with autism to manage.
Moodyblues,
Steroids made me crazy, too. Ugh. That was the worst part of the Taxol infusions.
Re: positive attitude -- it is one thing we CAN control, and it's awesome when cancer patients do adopt this approach. My health care providers have often complimented me on my attitude, probably because it makes their jobs easier and they ran out of other cheerful compliments at some point (e.g., nice wig!). But, I don't think anyone should feel pressured to maintain a positive attitude or to be a brave cancer warrior. We each come to cancer from a different place. I came to cancer as a 46 year old woman who needs to work full-time and to be there for her special needs kids, who will live in our house indefinitely. (My sons are on a 10-year waiting list for post-secondary education services and, thanks to state budget cuts, we don't know what services will be available for them when they leave school.) Getting through treatment was the least of my worries. ((Hugs)) to Denise, HapB, and everyone on this site.
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shelabela,
Good to hear you're recovering from chemo. I have often thought that if I recur and do a BMX that I would consider DIEP. After my twin pregnancy, all of my weight gain ends up in my tummy area, so there's plenty of fat to use. Plus, you get a tummy tuck in the process! But, I would have to have the time to devote to surgery and recovery, and I still work full-time and have the time-consuming twins with autism to manage.
Moodyblues,
Steroids made me crazy, too. Ugh. That was the worst part of the Taxol infusions.
Re: positive attitude -- it is one thing we CAN control, and it's awesome when cancer patients do adopt this approach. My health care providers have often complimented me on my attitude, probably because it makes their jobs easier and they ran out of other cheerful compliments at some point (e.g., nice wig!). But, I don't think anyone should feel pressured to maintain a positive attitude or to be a brave cancer warrior. We each come to cancer from a different place. I came to cancer as a 46 year old woman who needs to work full-time and to be there for her special needs kids, who will live in our house indefinitely. (My sons are on a 10-year waiting list for post-secondary education services and, thanks to state budget cuts, we don't know what services will be available for them when they leave school.) Getting through treatment was the least of my worries. ((Hugs)) to Denise, HapB, and everyone on this site.
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Shelabela.ย I didn't do DIEP because of the extra surgeries and pain in two areas (mastectomy and abdomen).ย I also did not doย DIEP as I am 54, soon to be 55 and it wasn't worth the extra time that it would take to get it all completed.ย I had aย unilateral MX and will have theย tissue expander taken out and the implant placed before the end of the year (hopefully).ย ย I may work on getting the other breast to match at a later time, at this point honestly I can't wait to get this all over with.ย
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shelabela,
if i was only a good candidate i would do DIEP flap but i am not so i would have to go with implants and i am so scared about having TEs right now but it is what it is...
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Hi all, I think I've mentioned this before, but I'm wondering if any of you get tingling or pins and needles in your forearms and fingers on the side of your surgery? Mine is almost always there, but more pronounced at times. Wondering if this is normal??
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Hi everyone. Haven't posted in a while as I am still waiting for my Taxol to restart. Still have a dressing on wound but hope and pray this will be the last one. Seeing my BCN tomorrow morning who will check the wound. Fingers crossed its healed and Taxol will restart next week. I notice you receive Herceptin through infusion. I am also on Herceptin every 3 weeks but it is injected into my thigh (alternating each week) and only takes 3-5 minutes - no SE so far. I assume this is new as my sister also had Herceptin on 2 occasions and at that time (4-5 years ago) she had it as an infusion with her chemo. -
HapB I second SpecialK. You have to slow the infusion down to 90 minutes. It makes a huge difference!!!
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hap - your side effects from a 30 min infusion indicate potential benefit from dropping back to a 90 min infusion. I wouldn't suggest slowing your infusion rate, I would insist. Remember that you are the customer. Also, I believe injectable Herceptin is not yet being used in the US currently. The injectable dose is substantially larger than what you are getting with weekly IVinfusion.
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I really had trouble with Taxol (quit after 8) but going to a 30 minute of Herceptin worked for me. Had lots of joint pain when I started Anastrozole but it has gotten better over the last 6 weeks. Seems to just be the aches and pains of age 70 plus arthritis now. (I've already had surgery for achilles heal and for carpel tunnel). The handful of pills twice a day seems to keep growing but for now I will hang in there with the treatment. Quality of Life issues are important for me and I feel as if I don't have a very high pain threshold so I'm certain I will continue to revisit doctors' recommendations in the months and years ahead.
Hair on my head seems to be coming in very slowly (I'm over 3 months post taxol) although not on my legs and arms.
Just scheduled my 6 month mammogram and am certain that this Friday's visit will lead to another echo order. I resisted a bone density study pre-cancer because I had decided I wouldn't take the medication which my primary respected. Will probably have to revisit that now although MO hasn't focused on that as a SE. Will see primary again in August.
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Shelabela- glad to hear you are doing well after chemo and building up your immune system. That will help with your surgery recovery! I had Unilateral April 27 and DIEP recon May 27. My PS laid out all the options and I felt this was the best choice for me as I wanted a "one and done" recon i.e I didn't want lots of revisions. I had enough belly fat for one breast and got a nice tummy tuck out of it. I recovered from the mastectomy quickly, off pain meds and moving around pretty good in less than 2 days. My DIEP surgery was 7 hours - they monitor you closely for the first 72 hours to make sure the transferred blood vessels are flowing properly. I was in the hospital 3 days. Couldn't do much of anything for 3-4 weeks except sit in a recliner or on my deck (lots of vitamin D!) or sleep. Each day I could move around more. I was off work a total of 9 weeks. I am still tired, my breast hurts somewhat, I have cording under my arm but that's getting better, and my stomach feels tight. I am happy with the results and didn't have any real issues other than pain but even that wasn't too terribly bad. Feel free to private message me if you have questions.
In regard to the positive attitude string, I believe faith and a positive attitude can help you get through difficult times and probably has some health benefits. Cancer is a mean monster and we're all entitled to our down days; we wouldn't be human if we didn't cry or worry or get crabby with all we're going through. Staying positive, meditation, and acceptance has helped me see the beauty in each day regardless of how I am feeling. I start my day with thanking God that I get to see another day and then I go through my grateful list. I can't really complain or be negative when I think about the many blessings I do have. I tell myself that any pain or side effects or inconvenience is only temporary - good days are ahead for all of us!
Hugs and blessings to each of you.....
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Shelabela, my BMX was last Wednesday and I have been home since Sunday evening. So far my experience mirrors that of deni1661 - pain and very little movement other than from recliner to patio to couch to bed.
I left the hospital with 4 surgical drains, a pain ball and a Foley catheter (long story not fun!). One drain and the pain ball were removed today. Hurrah! The drains make sleep very difficult especially if you are a side sleeper.
I have a schedule of family and friends to be 24/7 caretakers for the next 5 weeks and a visiting nurse a few times a week. Between appointments, picking up prescriptions, milking and measuring drains,and preparing meals, so far there is a lot to do and it's a full-time job. I am not helping at all. A lot of planning took place in advance.
And to think I was going to go flat. Anyway, please feel free to pm with any questions. Also the 2017 DIEP thread has a ton of information. -
Suburbs - congrats on your surgery. Sounds like your recovery is going well, a few drains out is progress yippee! It's a long recovery but not as bad as I thought it would be.
I might have missed it but did you get your pathology results yet? I've been saying lots of extra prayers ๐ -
MLMSC - thanks so much for sharing your update. Great news, only 4 Herceptin left for you!!! I can't wait to hear the bell when you are officially done. I have 4 left as well with my last one on Aug 30. It certainly is a milestone to celebrate for us both.
Congrats on how far you've come on your cancer journey- wishing you the best -
Sooz714 - so sorry to hear of the terrible time you're having. You are tough. Sending prayers and hugs your way. Take care
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Taxol #5 done! Went good, my port cooperated and gave blood return right away. Ran some errands and stopped for supper at Texas Roadhouse. Have a busy week, 2 family birthdays and holiday weekend planned at the lake. I did take the plunge and shaved my head, the top had gotten so thin I couldn't style it. The back and side weren't too bad, I still have hair, just very short. My wig fits much better without the hair, had it cut to match mine. Out to dinner with friends on Monday and last night spent with my Bunco Babes, no one even noticed! I did get a bamboo beanie for night, just going bare headed at home. Last week brought the dry mouth, hoping nothing new this week. Have noticed slight breakout on my face, nurse said its from steroids. Still have my eyebrows and eyelashes. No neuropathy yet, nails still look good. Despite what others say, I still believe that positive attitude and faith has made my journey easier. I know I still have a ways to go, but next week will be halfway home! Another positive - I haven't shaved my legs or armpits in over a week!
Praying for a good week and few SE, everyone have a good 4th of July!
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hap - not all chemo drugs used for other types of cancer cause hair loss, however most for breast cancer do, and they do it with the first dose - that is why they say you usually see hair start to fall at about the 14 day point. With only one dose of Taxol you may only experience thinning, but not total loss.
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This is a link from Chemocare.com re: Taxol - 2nd side effect listed is hair loss. I am surprised any MO would say you won't lose your hair.
http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx
hap - The reason I like PREDICT is because it factors in treatment for Her2+ breast cancer - other calculators may factor in the risk, but not modify it with the treatment modality.
Here is a link to their site that explains what their numbers are based on:
http://www.predict.nhs.uk/faqs.html
As always, whether you recur is either 0% or 100%. Looking at those numbers will not tell you the risk you face as an individual, it will only give you a general group-based statistical prediction, which is exactly what their disclaimer says.
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hap - you won't find the Taxol and Herceptin regimen, or the Herceptin alone. Taxol with Herceptin as a stand-alone regimen is too new, and usually only prescribed for those with Stage 1, or less than 1cm and node negative. Herceptin alone is not a recognized regimen, it is only done by individual oncologists in very specific situations - you won't find any data at this point. The current trials ongoing are not complete so no info has come out yet regarding efficacy of Herceptin when not combined with chemotherapeutic agents.
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BJI the acne is from the steroids. If u have a dermatologist, they can prescribe retin- a . They have to file a special claim with your insurance to get it approved because its supppsed to be for teenagers. Will clear it right up.
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It's been 5 weeks since my Taxol was put on hold due to problems with my wound. After 5 Pico vac dressings it has eventually healed and I was able to have Taxol #3 yesterday with my 3rd Herceptin. So relieved to get back on track. Am keeping my fingers crossed there will be no more major setbacks. Aiming for Taxol to be finished by beginning of September and then 4 weeks radiotherapy. No SE's as yet from yesterday's Taxol - here's hoping that lasts ๐๐
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Hi all. Deni1661, yes, I agree the recovery from DIEP will take more time but so far I am glad I gathered the courage and went for the more involved surgery. The time required for expanders and fills and exchanges can be spent recovering from the first big surgery. Thanks for thinking of me and leading the way by going first. So far so good!
This week has of course been tough physically but I feel incredibly grateful. I got straight A's on my pathology report card - complete pathological response, no evidence of disease, 4 nodes biopsied with no evidence of cancer. There were no questionable margins to measure. My medical team will make a final recommendation on radiation. It looks like I may be able to avoid it. I could not have asked for a better outcome. I need to constantly pinch myself.
I'll be recovering for weeks to come but with gratitude and hope for the future. I will need to find a way to give back and volunteer to help others once my strength returns.
For everyone stateside, happy 4th.
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OH Suburbs this is wonderful news.. I'm tearing up! Hugs!!
Hugs from TN
Denise -
suburbs,
That's great! Also thank you for your posts about DIEP surgery
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My one and only statement on my last post before I took a break..
I would never force what works for me or other on to someone ... That would be rude and unhelpful.. You can't force this... you can't make someone be happy and positive ..... plus its not anyone's job to do so..
But we don't need someone jumping in and saying our opinion on what works for US is wrong... We ALL have to find what works for each of us and use it daily.
HapB I took what you said to myself and BJl about positive attitude as a slam against what we know works for us, That having a positive attitude was not backed up by research and we were wrong and could cause hurtful feelings to someone who didn't have a positive out look..
I think it started with your post on page 1041 to BJI.
You may not have meant it that way..but that's how I took it ... and if you didn't I'm sorry ... and I mean that with all my heart..
Also,after stepping back most likely it didn't help that was in the throws of chemo hell either..
I thought it best to take myself out of the situation.... and will again if it gets too much...
Having a positive attitude is NOT a cure...
Yes I am a firm believer in the Mind Body connection ..I've seen it work... over and over again .. you can't separate the mind and the body
I'm a firm believer in positive attitude or prayer ( no matter what faith or not ) or energy work or even humor, or?
Because it has helped ME .. I don't need any research to tell me that it doesn't I'm living proof that it does....keep reading I explain why
Do I cry?... every freaking day ... do I want give up... every freaking day ... do I get mad... yes... do I shake my fist and scream to the sky.. yes..
I am have never been this scared in my life.. and let me tell you I've been in some pretty scary places.. a lot of dark places in my life.. This cancer has them all beat...
But I made a promise to myself I whatever happens no matter if I live 2 years ..or 30 years ..
I was not going to become bitter with what time I DO have. I'm not going to have my family and friends remember ME as a bitter old woman ..
I was going to fight ....even with myself at times to be happy and positive....
Y'all don't know me .. or my back story .. but I will say this I fight depression,anxiety and a form of PTSD everyday of my life.. I have to work at living .. Learning how to have a positive attitude was something I HAD to learn to do to just survive .
Then BAM! Cancer... :::flipping my tumor off ::: its not going to take that hard work I've done on myself away from me.. its taken so much already .. no .. no way ...
If what I've said or will say in the mind/body connection upsets you HapB or anyone else .. then just pass my post by..or block me.. because I'm not going to stop being who I am ...just know that I wish you well,health and happiness ... and will move on ..
If anyone wants talk more about this with me .. I will be more than happy to take to pvt. conversation ....because this is NOT what these boards are for...
We've got too much healing and living to do to waste our time on this .....
Hugs from TN
Denise
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