Who is starting chemo in September 2016?
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docmama: Love your hair! It's rockin'!
CC2016: I am not at all a hip person, but I'm feeling like it with this hairdo. Why not do something rad? It's time to have fun with something!
(I'm starting radiation on Monday, so I'm looking forward to the end of the tunnel!)
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Met my new MO today. As expected her take on treatment would be different than my last but...ugh. She agreed on chemo but not the aggressive AC+T. Oh well, too late. What's interesting is I had gotten a second opinion who also said aggressive and even named AC+T in his consult. So 3 opinions and 2 agreed.
Started tamoxifen today but have a feeling that will not last 5 years. MO is recommending a consult with a gyn onc to talk about ovary removal. If that happens I'll be switched to an ai. Anyone going this route yet
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Hi ladies! It has been a while but I finally just read through the posts. Congrats to Nayda and Seq...I am sure you are beyond thrilled!
I laughed with all the hair posts because I use to have dark brown hair....now there is a lot more gray hairs..I still wear a hat when I am out and about because there is not enough to make me feel confident but I am close -
So my update....I had a bilateral mastectomy on Feb. 2 and I came home to sleep on a great recliner. The drains lasted for about 2-3 weeks (that was quite a learning experience). The pathology report came back very positive which made me pretty happy. I just started physical therapy 2 weeks ago to get my arm feeling better (they removed 21 lymph nodes on the left side and I still feel numb and tight). I did my radiation mapping today and that begins next week on 3/29 until 5/8. I am still on Herceptin every 3 weeks and that will be until some time in September. Overall, I am feeling pretty good. My energy is coming back and I am trying to exercise as often as I can. I am really look forward to radiation working for me and hearing the cancer free words.
I wish everyone well!!! We all need to hear great news!!!
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Dennyj, sounds like you are doing very well, congratulations on the good pathology report! And the hair progress lol.
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Good to hear from you Denny...congrats on the good pathology report...I agree we all need good news!
I have a radiation consult on Thursday...I really don't want to do radiation and I told my MO this...he said for me to just do the consult before making a decision..He also said I couldn't start my hormorne therapy until I spoke with radiologist first. i just feel like I don't need radiation at this point.
I have an appointment today to get fitted for a mastectomy bra and prosthesis..i hope my insurance will cover this...I have been missing my breasts this week..especially when I get dressed...I have to get used to this new body of mine..lol
Everyone Stay Strong!!!!
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hi Everyone. I haven't logged in for a week and missed so many updates. Love the hair!!! Purple and white. My new hair was predominantly grey so once I got an inch and half length I decided to color. I am actually sitting in the salon right now 
As for ovaries, I am getting monthly ovarian suppression shots, and after one year I'll switch to AI . Before you remove your ovaries, ask your doc about the function they perform apart from producing eggs. So I would like to keep mine if possible. When I'm done with tamoxifen, I'll be 46, who knows, they might find a different treatment by then...
Wishing everyone optimism and patience ! xoxo
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smilethrupain, you're doing great on the hair front. How many weeks is that for you now post-chemo?
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misslil, thank you. 17weeks. The stylist had to trim the fine ends . Ditching the wig
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That's great that you're ready to "ditch."
My wig looks nice but after 7 months already I will be super happy to be rid of it when I get to that stage. Since you are four weeks ahead of me, I will hold back my intense jealousy on the hair growth ha. But I don't think at 17 wks I will be anywhere close to where you are now, maybe by May or June if things pick up the pace. Losing the wig for summer is hopefully a realistic goal.
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Thank you for the positive feedback. I wish I did not have to do radiation but I have a inter mammary node that I have to deal with....hopefully I will have a complete response.
Smilethrupa....your hair is looking awesome!
I had a heart breaking conversation with my 9 year old tonight. She keeps a lot of her feelings in (she is a very private person) and at her doctors appointment today she told her doctor that sometimes she worries about things. She was not specific about what worries her but he gave her coping skills that she could practice. So I asked her about the conversation with her doctor...at first it was about school and then it came out that she is worried that I am going to leave her and the family. She cried for quite a while as I tried to hug and console her. I told her that I did well with chemo, the surgery went well and I plan on continuing to do as well as I can. The conversation was so hard....I feel horrible that the kids even have to worry about this....this is when this whole experience feels surreal again.
On a positive note....Today I was calling around to find a compression sleeve for my arm (which has been surprisingly hard to find) and I called this local company. The woman on the other end of the phone asked me about my situation and then asked if she could share some "hope" with me. I didn't know what to expect because I have found that people can provide an assortment of "hope" or stories that I could have done without...Anyway, she told me that she was a 22 year survivor and that if I ever needed anyone to talk to or just wanted to be encouraged to call her. Honestly, this woman was like an angel...and I needed that positive vibe this morning. I enjoy survivor stories.
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Dennij, it is a strange situation we find ourselves in as parents. I have probably shared here that I didn't tell my 10yr old son that I had cancer until the chemo was over. His classmate died of cancer last summer, and my son associated cancer with death. So I had explained the disease and the treatment in broad strokes without calling it cancer and chemo. Once I told him, he was so sweet, he asked many questions about survival, genetic links, prevention, outlook, then he said, had I told him about this from the beginning, I'd have saved myself tons of headache, as he would have been a model child and behaved well .
I was told by social worker and pediatrician that the children's worry is inherently a selfish thing, not in a bad way. They worry about us because it affects their security and way of life - especially mothers. Who would take care of them, if anything where to happen to us? I personally went through it as a child, because my father died when I was 10 and mom had BC a couple of years later. If we reassure children about their safety, that we are doing everything we can so that we are around a long time, and involve them in it - them become helpers by doing chores, or fixing a cup of tea (little things, my son needs to not fight with his sister so that I don't get stressed out, and needs to fold his laundry, and do the heavy lifting of laundry basket), we empower them to be active participants. I would love to know what coping skills your doc suggested. My friend who is is children's anxiety therapist said apps like BREATHE that dana farber produced are helpful. Good luck with that. Misslil, I take 500mg biotin a day, and occasionally, whenever I remember really, smear coconut oil on my head and leave it for a couple of hours. My growth is still patchy - you can see through the skull. My hair before chemo was thin, so I don't expect miracles now. It's just with length I could create the optical illusion of fullness. Good luck!
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Well I have just had a long good cry....I really do not want to do radiation..i am just tired of all this..the appointments..the dr's and nurses...I am just ready to start becoming me again....had the consult with the radiologist...he wanted me to explain to him why I didn't want the radiation treatment...and I explained it to him...I am sick of all this and the pathology report came back clean no evidence of cancer..and I was like what will you be radiating, I had a double mastectomy...he responded with he is sorry that I am going through this and he understands that I am tired of this whole thing...but right now there is a 30 % chance of the cancer coming back..and if I was to do the radiation it will knock it down to 10%....he strongly recommends that I do the radiation especially b/c I was stage 3..he also said that I am young and I have to be here for my kids and my husband and my love ones...he said if I was in my 70's or 80's he would be okay with me declining treatment..He says it only takes 5 minutes and I will have to do it for six weeks...
#so upset right now
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nayda, hang in there. I feel you on being tired of all this. I've been quite mopey the last couple of weeks, not feeling like I'm getting good guidance from certain of my drs on what to do/not do, and just tired of it all exacerbated by frustration that my hair's not been growing back all that fast. Which last item is a stupid item to be focusing on given everything, which makes me even more mopey that I'm so shallow lol.
Take some time to de-stress if you can and give it some serious thought, see what your family thinks? From what I've read, the statistics seem pretty persuasive radiation is well worth doing in most situations.
I did not find radiation bad at all when I first did it (also after a mastectomy). I had no skin damage, and was not tired. I worked a full schedule and just rolled through. Hoping second time through, it won't be too bad even though I'm older, have been through radiation before to same area, just did chemo etc. Plus have a bad attitude heh.
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I'm so sorry, Nayda.
It does seem never ending, doesn't it? Most ladies report that radiation isn't nearly as taxing as chemo, but having to go every darned day is such a nuisance. Most radiation facilities run very efficiently in terms of getting you in and out quickly. I have a mapping / tattooing appointment next Friday and will be starting radiation in April, too.
Lyn
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thank you miss and lyn for your kind words and wisdom
I have talked to my family and they said its just part of the "healing process" and Its another hurdle I gotta jump through and that I am a tough cookie and I can do it.
I am de-stressing with wine..ha
I will be rocking the bad attitude..i already told the RO and his nurses..i told them don't take it personal..haha
Looks like we're doing radiation together Lyn:(
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For Lyn & Nayda....I had #18/30 today, and a month ago I was def in your shoes. So glad I did it...as it's really not bad, and surprisingly quite empowering -being able to do it without pain and something I can control (time, getting there, making it work in schedule, etc). It really does fly by quickly...even though I didnt believe it would.
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Looovve it KD!!!!
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Nayda...I hear your frustration. We have come this far, as much as the idea of radiation sucks, we can do it!!!
Smilethrupa...I could see how your son would relate cancer to death. Honestly, I am glad that we had the talk but it was tough. The coping skills he talked to the kids about were for generic worries (nothing specific to the BC)...using coping skills such as exercising, talking with a friend, positive imagery, and writing in a journal. Thank you for your powerful insight, everything you said was spot on. As a mother, I just want to protect them and make sure they are okay. It is really hard.
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Thanks, KD! I only have to do 15 treatments so it's definitely doable. I've cried little about my own situation, but shed many tears when my sweet Katie was diagnosed with lymphoma recently. Luckily, she seems to feel fine so far.
Lyn
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Nayda--I just wanted to share my radiation experience with you since we've been in this together from the beginning. Tomorrow I will finish my very last radiation treatment-- #30 of 30--6 weeks. I dreaded it so much in the beginning. I'd already had surgery and 20 weeks of chemo. Like you, I was tired of appointments, I was tired of everything. 6 weeks seemed like such a long time to have to go there 5 days a week. I was scared to death of the side effects. As I look back on the last 6 weeks, I've realized it has gone incredibly fast. Actually I can't believe that tomorrow is my last treatment. Each appointment has gone quickly and has been uneventful. I had none of the side effects that they said are possible. No burning, no pain and no fatigue. The only thing I have to show for 6 weeks of treatment is a painless red spot on my neck from radiating the lymph nodes. It is healing quickly. I have made some new friends in some of the staff members and other patients. But do you know what the most important thing is that I've gained from radiation treatment. It's the fact that I know that I have done every possible thing that I can to fight this awful thing. I thought about skipping chemo. The thought of going through that was the worst of the worst. But I kept thinking of the what if's. What if the cancer comes back and what if the reason it came back was because I skipped chemo. Each step of the process lowers the recurrence rate percentage. The final decision on radiation is yours and yours alone, but I know you will find radiation a piece of cake and it will be over before you know it. You can do it my friend! Hugs.
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Seq....what you have said...about brought me to tears lady.... Your right... I have to do everything possible to fight this cancer..not just for myself...but for my family....your words are so true...ty my friend. Ty you all for sharing your radiation experience with me... I really needed that.. Hugs to everyone!!!!
#i can do this!
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I love this website...i don't think I would have made it this far without this forum!
I feel lost at times.. Like today....it is great to talk with ppl who feel your pain.
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Great note, Seq. You can do this, Nayda!
Lyn
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I have to say reading the above posts, and "watching" the support and push brings tears to MY eyes! I feel grateful to be able to see such uplifting support, and to be a part of all of these boards. This is a place where we can be vulnerable, question, cry, complain, and whine, and then pick ourselves back up and push forward with each other by our side.
And KD- love that quote! That's how I feel I live my life through it's ups and downs.
Have a wonderful weekend ladies!
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Not that I've been keeping track or anything, BUT.....
*245 days since diagnosis
*197 days of active treatment
*134 days of chemo including 16 infusions, 30 pokes, and approximately 56 hours in the chemo chair
*30 radiation treatments with about a total of 7.5 hours on the radiation tableBut I am thrilled to say I AM DONE!!!!! No major side effects to anything. This has been a long time in coming but I can finally say it's a HAPPY DAY!!
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. Thank you everyone for all of the love and support you have given me throughout the last 8 months!! That means the world to me.
Now if my hair would just grow back to a presentable length and thickness. I start taking Arimidex tomorrow. Pretty nervous about that. I've heard so many awful things about it.0 -
Nayda--I'm so sorry. I didn't mean to make you cry. I dreaded this whole process more than anything. I had to come to many realizations throughout the last 8 months. The main one being is that we do what the doctor's recommend to fight the cancer for ourselves and our families because all that's left is the alternative. And that's an option none of us want to face. It's been long, it's been unpleasant but I know that I have done everything I can do. I finished treatment today. Soon you will be saying the same thing. Hugs to you!
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Np Seq...it was tears of truth, that this is something I have to do and I just really appreciated what you said. Congrats on finishing and being done with this mess..i am doing the happy dance for you lady..lol...I love to hear great news!!
I agree abjclan!
Hugs everyone!!!!!
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Congratulations, Seq!!!
My experience is very different. I've come to regret doing chemotherapy. The improvement in survival related to chemo is likely only 6-8% for my cancer profile. I get winded just walking a few yards to the mail box and can't even do a quick trip to the grocery store without using an electric cart. I can't work or pursue the dog sports I love. My muscles have been so weak since the last few Taxol that I can barely lift a gallon of milk with my good arm, let alone trim shrubs and rebuild a gate or regrout counters as I have in the past. Without chemo, I wouldn't have gone to the ER, said trip resulting in dealing with lymphedema for the rest of my life. I cling to the hope that my neuropathy is only temporary and that I'll be able to regain my endurance once the radiation is complete. I wish I could sound encouraging and inspiring, but chemo has destroyed my quality of life for the past four months and I fear the destruction may be permanent.
Lyn
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VLH: I hear you about the chemo. I wound up in the ER/hospital for a couple of days after each AC treatment due to a rare side effect no one bothered to warn me about. Plus, another visit during Taxol. My last Taxol (after daily for 12 weeks) was February 2nd, and I still have some neuropathy...but thankfully it has been gradually going away. Chemo did ruin my life for several months, but I do finally feel like I'm getting to my 'new norm' again (well-still in radiation; so have a ways to go). Hang in there
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Nayda - it sucks being young here, doesn't it? And you're much younger than me. I've gotten the young speech by every doc. "Since you're so young...." recommend chemo, aggressive chemo, longer rads...and my latest this week-consult a GYN onc about ovary removal. I've been wondering if this will ever end as well this week. (I actually started a blog about this journey and called it Young, and Otherwise Healthy since that was all I kept hearing last summer anyway.) But as others have said, you have to do everything in your power now so that there won't be a next time. I'm doing it. Dragging my feet at times but doing all like a good patient. Hand to God if I have to do this again down the road I will NOT be such a good patient! Expecting not to have a treatment and then being told it is highly recommended REALLY sucks - that was chemo for me, I had a lumpy so knew rads was coming. Great surgery, clear margins, node negative and the damn Oncotype came back intermediate. "Since you're young...." Cry it out, fight it out (I got a second opinion, just to hear the same thing in another voice - actually did wonders for my mental state, the whole weight lifted thing, for real. I'd totally recommend a 2nd if you need an added push), and then do what you know in your heart is right for you.
My take on rads - not a big deal. Wasn't fun, was very "exposing," was a daily job to get up and dressed and drive to the center. Took longer to drive there and back than the treatment but it was over in 6 weeks and it didn't seem that long. (and then I started a REAL job the next day!) My skin did get a bit burned and uncomfortable the final week but now, a month later, it's still a shade or two darker but back to almost normal. Young skin is a bonus on this one. Chemo effects are still bugging me worse. Even started tamoxifen but haven't noticed anything bad there yet either. Chemo sucks. Amen. Amen.
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