January 2017 Surgery Group
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I completely agree with lisabekind - Check out the Look Good, Feel Good Classes. You get a bunch of really good make up and a wig... It's nice to have more than one wig (if you've already gotten one). My youngest son named my wigs (I have a few)... for example he'll ask me who is picking him up today, is it Stacy? I don't wear them often, but when I do I get to adopt the name along with it. :-)
3Bears - Not the best way to spend Valentine's day, but I bet you are glad to get started! The sooner you start, the sooner you finish!!! I love the attitude! That's my mantra as I prepare for radiation!
Elem - You can do it! We'll most likely be doing a lot of radiation together!
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my look good for better clinic is next Monday! I am super excited.
And, the cleaning program found a cleaning service to match me up with ( at first they were all booked like what fightingirl found but they told me they were still trying.) They not only found someone but had an opening today and are currently cleaning my dusty, grimy house. The program is FOUR cleanings! Sign up, ladies.
It's hard for us all to accept help from friends and family, maybe accepting help from programs is easier?
I also found the results of my genetic testing were available, so a good 30 minutes of persistent calling finally resulted in the results in my inbox...Negative! Super happy for me and especially for my daughter
I am also finding tracking the bills for this to be a huge deal. Glad I took the advise I read at the beginning of this journey and started a big 3ring binder to organize everything. So far i have found 3 major insurance issues and have them working to resolve them. The worst was the letter (after the fact,) stating that brachytherapy isn't covered under my policy. For goodness sakes we pre-authorized it!
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Good Afternoon everyone! Lots to catch up on here. I hope all went well for Vargadoll.
DaniCalifornia, yes, you'll be on a very similar cocktail to the one that BeachBabyK and I were on. You are lucky that you only have 4 rounds every three weeks. I had 6, not sure about BeachBabyK. My hair fell out, but I really think that it was due more to the Perjeta than any of the other 3 - you'll have to ask your MO. There are cooling caps that you can wear to decrease the chance of your hair falling out. It works for some people, not so much for others. I chose not to use one because of the cost and also because I didn't want any little cancer cells to hid up in my hair follicles and come out later to taunt me, lol. My hair is really coming in now (6 weeks since last chemo) even with the continuation of Herceptin until September. Look to see if anyone has started a chemo group for February or March; you'll find lots of information there.
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3Bears, thanks for the update! I was thinking of you today & wondering how you made out. Love your attitude! You're right, a little short-term discomfort for long-term peace of mind...you can definitely do this!! How's the Feb Chemo group of gals? I'll know tomorrow if I'll be joining you on that board...
Lisabekind, knowledge is power! I'm a researcher too!!
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Taxotere is actually the drug that makes your hair fall out as its platinum-based. :-( Carboplatin also lists hair loss as a side effect. I do know of people that used cold caps and kept a good amount of their hair. I kinda wish I had known about it before I started me chemo. My hair is just now coming back in (also about 6 weeks).
Pyrrh - glad that you are negative and that you have the little mice cleaning your home!
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I'm all done! Sleepy but all 14 catheters in place and ready to go radioactive Thursday! Everything went smooth but it was a long process. Left the house at 9am and it's 3:30 here now. Will post more and catch up on posts after nap. Much love ladies!
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Good afternoon ladies..... I am following your thread/posts, as I am scheduled 3/9/17 for Rt. MX with spacer. Still digesting the next phase re: reconstruction w/ BMX of left ....and whether DIEP or not. Plastic Surgeon noted I have enough in my post menopausal tummy pooch for 2 nice "C" cups. So I guess that 's one way to be thankful for that addition. Still deciding, based on recovery and down time..... Can anyone weigh in on reconstruction with DIEP ?
In midst of all the pre-surgery stuff....stress tests, cardiac clearance etc. Never been to some many DR appts. , guess I am making up for all the full vitality years.
Appreciate the input......
BTW here's a little something that popped into my email today.....you might enjoy it. It's a piece from Ralph Marston @ greatday.com http://greatday.com/cgi-bin/X10/video.pl?mc17020709HQc6x
Terry ( aka Whistlestop)
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hi Whistlestop: I had seriously considered having the DIEP to the point of having it scheduled. I wrote a long post of my reasoning to go with pre-pectoral implants & reconstruction instead way back on page 2 of this topic board. Here's a good DIEP thread by those who chose to go that route...I found what to do about recon to be a difficult decision but I'm happy with what I ended up choosing...wishing you a good outcome & peace with whatever you decide...
https://community.breastcancer.org/forum/44/topics...
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Fightingirl: wow! So glad the catheter placement went smoothly for you. Blast those cancer cells into oblivion!! Xoxo.
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Hang tough all you ladies needing chemo. Start mine tomorrow and I'm on the chemo board for Feb. Had a port put in yesterday. Wasn't that bad!
Good luck all having surgery. It is so tough waiting for results.
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Good luck Fightinggirl. Get your rest
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RoseRN1: good luck tomorrow! What's in your "chemo bag?"
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Hi ladies,
I do not post very often but have been following everyone's journeys. I have to say that you all are an inspiration to me even though we have never met. There is so much strength and support here from women that really do get it. I have a few friends that have been down this road that can relate but have many more well meaning friends that are way too free giving unsolicited advice and have no clue what this is really like, emotionally and physically. My mom and sister have both defeated BC, so they are huge support to me.
Someone a few pages back discussed how difficult it is to accept help. They sounded so much like me. My work family arranged a Meal Train for me. So, every other day someone delivered food to our home. The food was delicious and I really did appreciate it but it stressed me out so bad. I would worry about the messy house, how terrible I looked, and about the dogs jumping all over them. I am usually the one that takes care of everyone else and I like that role much better. The last meal that we got was actually a pizza delivery that a friend sent. That was a great idea I thought. No stress about entertaining the pizza guy, though the dogs did still give him the once over.
I wish everyone the best no matter where you are with treatment. I know many of you are still in the waiting phase to find out what's next and I think that's the worst part. I'm a get it done and behind me asap kind of girl. During my first round with BC ten years ago, I did have 33 sessions of rads and took Tamoxifen. I have to say they are both doable. When I first started rads, I thought there is no way in hell I could do that for six weeks but before I knew it, I was done. Rads did have a cumulative effect in regards to fatigue. It was after I finished and went right back to working 12 hr shifts that I realized just how tired I was. So be good to yourself. Nap often!
Good luck to all of you recovering from surgery, undergoing reconstruction, and beginning chemo or radiation. I cannot believe we are well into February! What a rollercoaster of emotions January was. Next year at this time, hopefully everyone in this group will have BC in the rear view. Wish we could all meet up in the cabanas! That thought is what kept my anxiety under control going into both of my surgeries!
I am one of the fortunate ones that will not be joining the chemo group. BMX revealed a lot of pure DCIS-only. On Jan 20th-2 wks, after BMX, I had direct pre pectoral implant placement. That surgery was way more painful than I had expected. So far my radiated skin is healing ok. My skin was still very swollen and not very pliable apparently so only have smallish implants and will likely have some fat grafting and maybe attempt a larger implant in about 3 months. I believe both of my nipples will survive. So for now I'm done and just recovering and enjoying the beautiful coastal NC weather we have been having before I have to return to work in a couple of weeks. The bills are rolling in and the PTO is running out!
Best wishes and hugs to you all!
Alli
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Pugsmama (taxotere and cytoxan) every 3 weeks for 4 rounds
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Alli glad to know you don't need chemo. Hope your pain improves from the surgery! I think we are all entitled to have an emotional day every now and again. We are all 'Superwomen' but also part human
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Hi everyone - been a very long day with several apps and the last one was an hour late in getting started.
First - Fightngirl - congrats on getting everything in place. Remember that song Radioactive by Imagine Dragons?? That's what you made me think of. I'll be there eventually too.
Vargadoll - thinking of you and hoping you are enjoying the post-op sleepy comfort.
So the apps - MO was first and chemo is a definite. He said everyone was surprised at the size of my mass and that it was in my nodes as extensively since nothing showed up on my MRI. I have the numbers wrong - it was 6/17 nodes. Made me feel better than 9/17 but it was intralymphatic in a couple of places which is honestly freaking me the hell out. We had a long conversation about PET scan. I asked why we even bother and he explained the reasoning - basically to know exactly what we are dealing with. But for me - I just don't want to know. I'm afraid that it's spread and I'm not sure I can handle more bad news. The only bright side is he said that I will get results within about an hour. So I go back to him in three weeks and start chemo immediately thereafter. So looking at the calendar I think it will be around the first of March that I start chemo. I will have every other week for 8 weeks (AC) the T weekly for 12 weeks. 20 weeks - 5 months - I cannot get my head around hat. I go to chemo class on Friday, port placement on 2/20. I have to buy a wig too. Well, I don't have to - I am going to go ahead and get a couple.
RO was the next appt - he reiterated what MO said - everyone was surprised - yeah, no one more than me. He said that after a three week break from chemo we will have 6.5 weeks 5 days per week. He wants to stretch it out a little because of the TE's - said they have had success with less contracture if they go a little lower and longer.
I'm guessing after that we will have another PET scan and see whether it did any good. Then we wait about 2-3 months during the final fills and remove the TE's and hopefully shut the book on this, except for being on the long-term Tamoxifil (sp?).
I have had such a hard time getting my head around all of this but I did like my MO's approach - he said to live my life and chemo is something else I'm managing and not the other way around - with chemo in the center of everything and trying to fit my real life into it.
So I'll either be on the Feb or March chemo board. Probably the Feb because I like being at the tail end and learning from others' experience. But I'll hang out with this group of lovely ladies as long as you are here. You've helped me so much to this point - cannot imaging not having you for the long road ahead.
Almost forgot - also saw the BS - said everything is going well. He's hopeful that the drains come out with PS tomorrow. Not more than me for sure. Referring me to PT and OT to stave off lymphedema. He said if I start showing signs they have one of the country's top lymph node transplant microsurgery centers and it's shown to have an incredible affect in decreasing risk of lymphedema recurrence. So that's good.
Here's hoping 2017 gets the hell over quickly and with less drama than it's had thus far.
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thanks girls! I napped some but the pain meds bringing strange images/dreams behind my eyeballs but I still feel better having laid down for awhile. Giving a quick run down on today as I know some are considering brachytherapy. There are several methods savi/contours/mammasite. The one I have is Interstitial
One hour before appt took Valium, pain med, and rubbed numbing cream on breast then cover with Saran Wrap.
On the way to appt I look at my phone calendar and realize that my cancer brain screwed up again and thought my appt was at 10 but really it's at 11. Call the office because now I've taken all of the above 2 hours early but they tell me to just come and doc will probably be ahead of schedule anyways! Whew!
First I go into the CT for quick scan. They sterilize the area. Doctor comes in and massages my breast to pull the skin away from my implant. He says I have good bunchibilty which I don't even know if it's a word but made me laugh! They then take a template and squeeze that skin between two clear plates (kind of like a mammogram it it stays squeezed in there throughout) They numbed up certain areas and stuck I'm guessing hollow needles through from one side to the other. They do more numbing and repeat until I have 14 needles going through. Then they take the catheters (long but very thin plastic like tubes) and put those through the needles and tug out the needle leaving the catheter. I did feel tugging but no pain. I go back into the CT so they can make sure everything Is placed well. I go with a nurse to get cleaned and bandaged. At this point I still have very long piece so of catheter that they wrap and fold towards my back and under my new fancy surgical bra I will wear until treatment ends. Went to lunch with the hubby an to had to back 2 hours later. They clipped off the extra catheter sticking out and used some sort of heat gun type thing to seal the catheter. Another CT and a lesson for hubby to clean the areas on non radiation days and done. The physicist also came in at end and not sure what she as doing but she isn't in charge of getting me dosage etc right with radiation. So now I have what looks like 14 buttons on my breast in 3 rows on the right and another 14 on the left. They are about the size of an Advil pill.
Nothing was terribly painful...some pressure and the tugging but overall pretty easy. The numbness I'd wearing off and I definitely feel it but going to be good about keeping the pain meds in on schedule. So there you have it in case brachytherapy is offered to any of you!
I left with a calendar print out of my radiation treatments which will be twice daily exactly 6 hours apart and bless the girl who changed Thursday's schedule so I can make my oncologist appt after all. I will pin that calendar to my shirt since I can't be trusted with appt times!
Sorry for the long post. I'm gonna go back and catch up on all of your days now! ❤️❤️❤️❤️
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Shellybeans, my heart goes out to you right now. That is an awful that to get your head wrapped around. We are here for you and the approach of your MO about nmanaging chemo. You are a gonna get through this. ❤️ The words seem so generic but we are all rooting for you. I did put Radioactive on my F Cancer playlist!
Alli, you are an inspiration to me...going through this a second time. Much love to you my friend.
Pyrrh, I almost had a heart attack last night when I opened a letter from Cigna saying they were denying brachytherapy...the night before my procedure! Then I opened another later saying it was authorized. You do have to watch them for sure! congrats on the genes and getting g your house cleaned! I was bummed to learn they had no openings in my area. If I end up needing chemo, I will try again and see what happens.
Have a good night ladies...I'm still all medicine head so going to get to my Netflix! ❤️❤️
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YayFightingirl...so glad you don't have to wait another week for the onco appt!! Whoo hoo! Where has cancer brought us that this is what we're cheering!! We'll take any victory we can get!!Lolol love you!
Shellybeans: I think it's a real positive that you like your MO. He's right about where chemo fits in your life...hang onto that! xox
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DaniCalifornia- I had the same chemo as Beachbaby and Docmama- but like them- 6 rounds. You can do this, but they're correct- hair will fall out. It freaks us all out at first, but it's ok! I never wore a wig, wasn't something I was interested in doing and have been just wearing scarves or beanies.
So sorry some of you are hitting the chemo train but Shellybeans- yes- you're going to kill any of those floaters that none of the tests can detect and get back on with your life. That's the plan! Remove, kill, and move forward! It's overwhelming, but you will get it just like with the surgery- I promise!
Wishing you all well...it's hard to stay up on this board, but I try and scan it once in a while. I had 2 drains removed yesterday- looking forward to getting rid of the other 2. I agree with the uncomfortableness on the TE's. Not really taking much in the way of pain meds now- some tylenol here and there.
Wishing you all the best in this journey.....
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yes my sweet pugsmama, the little things are worth celebrating...I was really sweating that, thank you for sharing in my joy. So you on Wednesday and then me on Thursday. So glad we all have eachother no matter how it turns out.
Just had to get my RO paged...pretty red around my catheter "buttons". He says happens about 10% of the time and to take my temp every 4 hours...If temp creeps up then I have to be seen tomorrow and start antibiotics. Go figure, I'm in the 10% with this and in the 20% who develop cording. This stupid boob!!!
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Fightngirl, what have I missed? What are you having done?
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pugsmama,fingers crossed for you tomorrow!
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Good luck RoseRN1 . I hope it goes smooth for you tomorrow. Shellybeans , its an awful lot to grasp in one sitting , but I think your MO gave you some great advice re: management of chemo and where it fits into your life. Alli , what an inspiration you are to everyone here. You have beat this once and so have your Mom and Sis.That is so awesome! Glad you were able to get the help and Iam sure it's hard , but so needed when there is so much going on. ! Fightingirl congrats on getting everything ready for your internal rads. Sounds like it went well so far. One more victory in this crazy world of BC. Hope our Vargadoll is doing well after rocking it in the OR today. Pyrrh , I hear you on the mounting bills. Theyvjust keep coming . I am only 770. Away from my max out of pocket .. yeehaw! I am glad about that! I ran out of PTO at work in January so , I need to get back to start earning again! 3bears livevyour positive attiude. Love you all .. and Docmama nice to see you here today too.
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Hi DaniCalifornia, brachytherapy. High dose radiation that is delivered internally vs traditional external beam radiation. I will be treated twice daily for 5 days instead of once a day over 6-8 weeks
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wow, I've never heard of that. How did you determine/decide to do that over traditional radiation
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good luck tomorrow RoseRN1!
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Good luck RoseRN1 . I hope it goes smooth for you tomorrow. Shellybeans , its an awful lot to grasp in one sitting , but I think your MO gave you some great advice re: management of chemo and where it fits into your life. Alli , what an inspiration you are to everyone here. You have beat this once and so have your Mom and Sis.That is so awesome! Glad you were able to get the help and Iam sure it's hard , but so needed when there is so much going on. ! Fightingirl congrats on getting everything ready for your internal rads. Sounds like it went well so far. One more victory in this crazy world of BC. Hope our Vargadoll is doing well after rocking it in the OR today. Pyrrh , I hear you on the mounting bills. Theyvjust keep coming . I am only 770. Away from my max out of pocket .. yeehaw! I am glad about that! I ran out of PTO at work in January so , I need to get back to start earning again! 3bears livevyour positive attiude. Love you all .. and Docmama nice to see you here today too.
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Thanks DaniCalifornia: I know you're all rooting for me! I'll take that with me to my MO appt tomorrow..
Fightingirl: praying that your redness isn't the start of an infection...
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love to you Pugsmama .. you are always so upbeat and make everything seem alright.
Yikes Fightingirl, hope that redness is nothing but a irritation and not an infection.
Good luck tomorrow to Zsupullar with your surgery .
Good night Dear Ladies sleep well .
👍💗
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