Starting Chemo July 2019
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Well I guess he is right jjpope. On the plus side, based on your stats it's a low likelihood it will come back? But of course we all get it better than your doctor who is walking around not having had cancer.
Glad you are feeling better !
I had my rads planning appt today but they wouldn't schedule my appts. I start 1/6 but they won't know what time they can give me an appt at until 1/2. I think it's BS. I don't like how doctors seem to not take into account that people have to work. I know that overall cancer treatments are more often done on older people who are likely retired-but come on. So hopefully they can get me in after 2pm like I am requesting b/c apparently there is no way they can get me in early (earliest appt is 8:30am- which isn't even that early) and I take a train to work so my options are limited. If I have a standing appt M-F at 2pm or later at least I can tell work I can work 4.5 hours per day. IF I could get in and out by 10AM I would be able to work M-F 6 hours per day which would be better. These treatments really don't make it easy to balance. I am lucky my work is as good as they are about this. Many jobs I'd be screwed.
Anyway who all is really excited to say BYE to 2019 ???
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2019whatayear def understand your point on scheduling! How many treatments do you have? I am so ready for 2020 and the main word I hear in my head is CHANGE. I even sat down with my husband last night and had a very clear to the point conversation with him about I wanted change in 2020. That I wasn’t going to continue living how I was living, that I want change for the better and I don’t have time not to change. So I told him what my goals were and he came up with some of his and we both came up with some for our family. I’ve always lived for others and I need to start living for myself. 2020 for me is about a fresh start, not being sick, and bettering myself and my life. 2019 I know was a year that was already planned and though I may not see or know the reason now, I know I will in time. I’m just so glad it’s a chapter closed and beginning of a new one.
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Good evening ladies! Hope all is as well as it can be!
Not ready for the holidays - I am like 2019whatayear - this one can go away any time now. This year has sucked like no other, in fact my hubby and I have been get nailed for about three years now so I am ready for some good mojo. I was working on my bills earlier and I use a day planner to organize everything. When I opened the front of it I saw the 2020 and 2021 calendars and couldn't help but wonder what all those days have in store for me. I know not every day is good but I sure would like to have it be better than it has been.
I fear that as we go on our journeys and things improve that we will go our separate ways. I have come to depend on this group more than listening to my Dr's as they like to say everyone is different. I have leaned on the fact that we share symptoms and fears, have ups and downs, that everyone has a little hair but its a work in progress. I hate that we have this in common but need to hear that others are looking at their husbands and saying things have to change.
My surgery is coming on January 9th - I really can't wait. Did any of you have soreness in breast after you stopped chemo? I feel like my tumor just wants to go on a rage - I just want it in off my body and in the biohazard bin. I hope the rest of this journey goes like the Dr says - surgery, reconstruction, radiation, and done. I have the same fear as you jjpope1 - what if the rest of my life is spent fighting this same battle over and over? I don't want to die young but I don't want to be sick and scared forever either.
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2019whatayear I agree on the scheduling. I feel like treatment success also hinges on our overall happiness and minimizing stress levels so scheduling is really Important
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hi guys.. i got a question. Does trastuzumab + docetaxel shrink a tumor
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I love my mom- that's the goal of chemo before surgery.
Jjpope and Deanders, yes to all you guys said. I am looking at 2020 and and looking at myself and asking how can I live more fully. Like frankly a cruise around the world would be nice - and life is short and at the same time- I don't know that taking out a second mortgage on my house to take the cruise would be the best if I get to live for 4 more decades like I would like to live. Ya know? So I'm trying to find a balance where I am living more fulling, doing/learning new things with in the means of a parent with three teenagers. Ya know? So cancer made me get out of my comfort zone in many ways and now I need to keep getting out of my comfort zone as far as how I spend my time on a weekly basis (work, come home, make dinner- maybe do some dishes or laundry, watch TV read or scroll twitter and go to bed - and repeat repreat repeat) Boring!
So now is the time get out of that routine and I figure I don't have to wait to do something big and dramatic. I can start by little things- do a craft class at a local art store, take advantage of free concerts at the community college a mile from my house. Basically expand my horizons, you know?
I am having 25 rads treatments basically on the top left quarter of my chest and under my left arm. I'll be doing the breath holding technique to help keep the radiation away from my heart as much as possible I like that the breath holding has a cool name: Deep Inspiration Breath Hold.
Happy first day of winter! One of my January goals is to find the joy in January b/c traditionally I really don't like winter.
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Surgery today! Lumpectomy with Sentinel node removal. Went in at 6:45 am and left at 1:15 pm. Overall not a bad experience. They registered me and someone came out and took me to day surgery room. I changed into the gown and then the anesthesiologist came back and asked a lot of questions. The nurse came and put in the IV and gave me 5 pills - one was to relax me. Then they took me to the breast center where the radiologist numbed my breast with little tiny pin pricks, inserted the radioactive stuff (not blue dye) and inserted the wire. Nothing hurt and the longest part was her finding the tumor using ultrasound. After the wire was inserted they took me to another room to get a "soft" mammogram where they just gently pressed. Then they took me to another room and took "gamma picture" with a machine I've never seen before. Next was back to the day surgery room where I waited about 5 minutes before they took me to surgery. In the surgery they placed electrodes on my back, gave me oxygen, then the anesthesia. I'll write another post about waking up.
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Waking up was hard. In the recovery room the first thing I said was "You didn't use the Michael Jackson drug." I couldn't wake up so I knew right away they used something different. They asked me how I was feeling and I told them it hurt. On a scale of 1 to 10 I said 8. They gave me fentanyl. This made me even more sleepy and "loopy" but didn't take away the pain. They gave it to me three times because I kept telling them it wasn't working. They should have tried something different after the first time. Anyway, they finally took me back to the day surgery room where the nurse gave me a hydrocodone pill and the pain was gone in five minutes. I came home with a prescription for mild hydrocodone and instructions not to drive for seven days. 😳 Don't lift anything using my right arm (surgery side) and less than ten pounds using my left arm. Ice pack 20 minutes every hour if needed. Leave the dressing on for 24 hours and I can shower in two days. I meet with the Surgeon and Oncologist on Friday for follow up. It's 7:30 pm and I'm just now eating and getting a clear head. No pain. Not a bad experience (except for the fentanyl) and I'm so glad it's done. 😊
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Just a quick message to wish everyone a happy holiday, whatever that may be. Here's hoping 2020 brings us nothing but health and happiness.
To everyone recovering from surgery, I hope your pathology report comes back with the best possible results.
To those still doing chemo - keep up the good fight. You got this!
I have my preventative double mastectomy on January 20. Trying hard not to stress about it too much. Tamoxifen has been kicking my a$$, but trying to push through it.
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It’s 3:15am here. Post surgery and i can hear fluid sloshing in my breast when I walk. Looked it up and apparently this is normal after lumpectomy. Will call the doctor later this morning to make sure. Happy Christmas Eve everyone!!!! 🎄😊
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Merry
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So as I head toward surgery I am having a huge increase in anxiety. I just wish I could get this done, the waiting is killing me. My mind is all over the place of "has it spread" "are we getting to it fast enough" "why does this or that ache" on and on. I am just terrified and can't get it off my mind. It has ruined the entire holiday for me, I have felt distant and stuck in my head. All I can think of is getting this tumor out of my body before it spreads some place and that's the end of me. The sad thing is that once I have the surgery, I know I will be a mess until I get the pathology report so more worry worry worry. I just don't feel like I caught this soon enough - I let it go too long. How does something get to 5cm so quickly and will it grow too much before I can have it removed? I know I did all the chemo but now I worry that it was just that keeping it at bay. Now that I have stopped chemo, I think it's just growing with a vengence (which I have no proof of). Our minds are such enemies in this battle.
I do have a question from those of you who have had your surgeries - what type of post-op garments were you given? Were they crap? Do you have a recommendation for better? I am just having one breast removed and have no idea what to get to stay comfy. Advice appreciated!
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pathology report back 4 days after surgery: clear margins and 2:2 lymph nodes clear 🙏🙏🙏 Thanks Lord!
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Hurray! 🎉🎉🎉
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So I had a full on breakdown yesterday. This waiting for surgery is really in my head. My breast has been sore the last week or so and it has me terrified that the tumor is coming back with a vengeance. I feel like it's pissed that I tried to kill it and now is going to go wild between now and the 9th of January. I keep looking at calendars and thinking how far away that is but really it is super close. If I didn't want it to happen it would come fast, right?
So much hangs on that surgery and what the pathology says. I need to know and it's eating me alive. I stayed home from work and just cried. And cried and cried. Nothing uglier than a bald, no-eyelash, no eyebrow, over weight woman sobbing. I ended up calling the Survivorship Counselor at my infusion center and meeting with her. And then meeting with a counselor, all while my daughter waited. That's a fail. I googled survivor statistics just to see that there is hope. I remember reading once that often when chemo ends, patients can feel lost in the silence afterwards. At the time I thought that was crap but there was some comfort in seeing my doctor and the nurses regularly for reassurance.
I had an MRI on December 5th and when my MO went over the results with me, I didn't understand half of what he said, which wasn't much. I mentioned that to the Survivorship lady so she managed to get me in with a different MO on Monday to go over them with me. Hopefully that will help alleviate some of my fear between now and the surgery.
This breakdown and moments of pure panic have me afraid of what is next. How will I live with this? How do I find a quality life in the rubble of cancer? What if the cancer has spread and that life just got a timer put on it? How do I not live in the "What if's"? Needing a little strength here and hoping to find just a shred laying around somewhere.
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deanders: 💕🙏💕
The waiting, the what if's, it's all so overwhelming. It doesn't help that with each step there are more questions that go unanswered. Feeling pissed off that no one can give us a guarantee that what what we’re doing will get rid of the cancer. This whole process is based on hope that what has worked for others might work for us too.
I've been struggling with "quality of life" A LOT. I'm angry that "the treatment" has given me neuropathy and feeling out of breath that may never go away. I fear that radiation will make it even worse and may give me lung cancer to boot. My fear from day one being that the treatments cause more illnesses and my quality of life goes downhill.
I’m pushing forward thebest that I can - including moments, days, and sometimes weeks of anxiety, impatience, rage, self pity, depression, thankfulness, hope, faith, and teeny tiny moments of joy. And if the anxiety gets worse I’ll request meds to help me cope.
I hear your pain, anger, uncertainty, and that little spark of hope deanders. Hang on the best way YOU can. I’m here with you! 💜🙏
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It really sucks Deanders. I hope hope hope that when you speak to the MO on Monday that you feel reassured, I"m thinking about you and hoping you are having a good day.
I got a generic call from the RO's office on Friday - and I called back and got their VM and they didn't call me back and so this weekend I'm worried about why they were calling- I can't help it. All medical calls w/o a detailed message cause me to go down a slippery slope of what if there is bad news. I really wish they had left a detailed message like I asked. Last week I had a dermatologist appt and my blood pressure went up 20 points- I know this b/c I had a gyn. appt just prior to the dermatologist appt. All medical stuff makes me very anxious now. I know if I was in your shoes I'd have a very tough time functioning.
Also Deanders when you come out of surgery they should be able to tell you something about what they removed. Tell your surgeon about your anxiety levels and see if you can get some info right after surgery b/4 the path report?
Melmax when do you start radiation?
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2019whatayear
Not sure when rads will start. Had Surgery on Dec 23 so I’m thinking maybe 4 weeks after surgery? Radiologist office supposed to call this week to schedule my first appt. Questioning the benefit of rads because I’m still struggling with being out of breath and neuropathy isn’t going away after chemo. Hard decisions.
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Question: how does a body produce so much estrogen after menopause and one ovary removed in my 30s?!? Doesn’t make sense that pathology says 90% estrogen +
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Positive: eyebrows and eyelashes quickly growing back although very light color they’re getting a tad bit darker. Leg and arm pit hair is very slow growing - hardly any at all - must look very closely. 😊
Negative: lip and chin hair quickly growing and DARK 🙁 I had a small amount before chemo. This is way more noticeable
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Good evening to you all! Sorry I've been off for a lil while. We had a good SLOW Christmas which is def unusual but good in a way. My grandmother passed away 2 days before my surgery so that has been really hard too. I miss her so much but know she's so happy in Heaven.
I feel that we all need to know it's normal to get mad, sad, cry, throw a fit, be happy, all of the emotions we go through ITS NORMAL AND OK FOR US TO F E E L. But we cant stay in that too long or we create bigger problems for ourselves. Yes we over think, over process, and over worry and that's what we do and what the devil wants us to do. It doesn't help if we stay in that place and we have to pull ourselves out of it. YES I'm speaking to myself too! But it only makes feel worse if we stay in that spot too long. The thing we all have to do is keep pushing forward, keep living, and know this was and is a plan that the Lord has. I know when I had my follow up on the 18th all I could do is cry and all I felt was I did all I could do and now I sit here and just wait for it to come back and it would be too late to do anything about it when it was detected. Like I'm waiting for a bomb to go off. And my MO said when it's our time to go we are gone and there is nothing we can do to stop it. He's so right. But it's so hard for me because I'm a fixer and I can't fix this. I have no control over this, but I can control how I live until that day comes weather it's due to cancer, car wreck, in my sleep, whatever it may be. I will live and leave a legacy. So it's ok to feel but don't stay in it and let it take you down. Being sick or in pain takes enough out of us and we don't need to add to it. We are strong, we are warriors, we are enough, and we are loved. We have each other even on the days we may feel we don't have anybody.
My hair on my head is growing and all over not just spots so that's good. Eyebrows have all come back and those terrible lady hairs 🙄🙄 eyelashes are about 1/2. My skin is still having a hard time and I just don't know what to do to help it. It's so dry and I have like small bumps all over my arms. So if you have any input in that I'm all ears. Toenails are still terrible.
I'm atill doing good from my surgery. Thursday was week 3. Again for me it wasn't anything that I anticipated it to be. I'm still sore dont get me wrong but not as bad as I thought I would be. I get worn out if I'm up and out too long. I'm having a HORRIBLE time with neuropathy in my arm and omg meds aren't helping. It hurts and burns so bad and I didn't have that in my arm until surgery so it's kinda off and frustrating to me. If you blow on it it hurts like hell, so who knows. The doctor has no clue as to why. If you want to see what they look like let me know and I'll send you a pic in a private message, I'm not a freak just know it will help someone get a idea of what the end looks like. I'm overall really happy with the surgery and think he did a hell of a job. Will have to go again for few fix's but overall they look great.
Well I think I've said enough 😂😂 and I hope it's helped someone. I love each and everyone of you and I'm glad we have each other!!! Have a good night 💕💕
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Met with the other MO today - it was nice to have honest and open answers to my questions. He even indicated that the other Dr is a great oncologist but is not great at explaining things. Admitted that was a clinic failure, which surprised me to hear.
So he went over the original pathology from my biopsy back in June that started all this fun. Said that the course of treatment is exactly what he would have done, especially given the size of the tumor. Said it was grade 3, stage IIIB which is info I did not have before. He also said that it does not surprise him that it did not shrink much with the chemo and wasn't sure why I was given the impression that it may shrink enough to do breast conservation surgery instead of a mastectomy. He also feels that radiation after surgery will be a solid way to go - given my age and tumor size. The MRI showed that it appears to be contained in the breast, is close to the nipple actually, and there is no indication of lymph node involvement. It also showed that the composition of the tumor has changed dramatically indicating that it is mostly calcified.
All these things definitely make me feel better, the waiting isn't so daunting now that I know waiting a month won't hurt a thing.
jjpope1 - did you get an immediate reconstruction? The hair loss from the nose down was the best part of the chemo, have to admit I miss that part. So sorry to hear about your Grandmother. (((hugs)))
Melmax - I am still dealing with neuropathy - my feet feel like I am wearing stirrup pants and tight socks and my fingers are just beat up because I can't feel them and keep jamming them. I have been squeezing a stress ball and I think it might be helping but who knows.
I'm so grateful for each and every one of you. Just being able to sit and off load some of my fears and wins to a group that gets what I am going through is massive! I can actually talk to other humans without bursting into tears - in part because I was able to come here and read that you all feel the same way as I do.
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jjpope1 after a shower and still wet, I apply baby oil to all places I can reach, give it a little time to soak in then apply 100% aloe gel on top. If I take a bath I add baby oil and Epsom salt to the bath water and apply aloe after patting skin dry. The dry skin (and itching!) was driving me crazy so I tried everything. This works for me.
deanders
Makes me so angry the other doctor couldn’t or wouldn’t give you this crucial information. Hopefully they’ll be more open from here on out. If not just keep calling the front office and bugging the shit out of them until a nurse or doctor calls you back. 😁 I’m so glad you’re feeling better! I never thought about using a stress ball for neuropathy. I should have one around here somewhere.
Everyone: I had a meltdown AT WORK about a month ago. Cried ugly and loud, lol. I was overwhelmed with chemo SEs and work responsibilities. Was not one bit embarrassed. Sorry, not sorry. 😁
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deanders have you tried neurotin I guess is how you spell it for the neuropathy? They gave it to me and it helped so much for the burning numbing pain, as soon as I took it I could tell a difference. The PS told me to up it to 200 mg 3 x's a day to see if it would help with my arm and nothing yet. But my hands and feet it was a game changer. I'm so happy that you were able to meet with another set of eyes and opinions and it was what you needed to see and hear! No i did not do immediate and I'm so thankful that I waited and would do it the same if I had to. The 1st PS I saw told me if I were his wife he would tell me to wait. He said the BMX is such a big surgery that I one needed to let it heal and then two it's not good trying to heal a huge area and then adding another thing to heal on top of it, third if the BMX didn't heal the reconstruction part would have to be taken out to get to BMX. So again I am 100000% grateful he told me to wait and that I did it how I did. I hope that helps. And I'm 1000000% happy with the DIEP. The entire process of doing implants is a ordeal in itself to me. Having to go in, put expanders in,, do weekly fills, is a big process and I've spoken to a good friend and she said was a painful process. I used my own fat to rebuild, got a tummy tuck and insurance paid for it all. For me it was a win win situation esp not having to go through that process of stretching my skin for implants 😳😳. Some may have different opinions on that but I'm happy with my decisions so far. The post op garment SUCKED that they sent me home from the hospital with. It was not a soft material at all and it was eating my skin up. My first checkup the nurse saw it and sent me to a speciality store that had special bras and inserts for breast cancer. IT WAS A GAME CHANGER FOR ME. The lady was awesome that worked there, measured me to get a good fit, it was soooooooo much better made and softer and the inserts I could do without. Being flat wasn’t a concern for me. They were really heavy if you ask me. I had never had a problem wearing bras before, like how some women can’t wait to get home to take it off. I never had that problem, but when I wore that bra with the inserts that’s how i felt. It was so heavy and I couldn’t wait to take that biotch off. I got a white and a nude color and it zips in the front. It’s almost like a sports bra but zips in front. I’m actually wearing it now and it’s made life so much easier for me. He wanted me in a sports bra that wasn’t a high cut like right below my breast so I used this cause the zipper is so much easier. I couldn’t imagine trying to life a bra up and over my head right now. I can send you a pic of it if you want to see it. For the 2 bra’s before insurance it was 600.00 😳😳 crazy that it could cost that much.
Melmax I'll def try baby oil and aloe. Thanks!
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Im really glad you got the information you needed Deanders. -I hope you are able to enjoy this time left before your surgery and have a good recovery. Only what 10 days to go, woo hooo!
Thanks for sharing so much great info Jjpope. Glad you are doing well!
Hey do you guys find that now people you know feel like they need to tell you about other people who have been diagnosed with cancer? I don't know how I feel about that. I guess in the past friends and fam would tell me if it was someone I knew too and I didn't think much about it. Now it's just like friends and fam will tell me about people I don't know and I guess it just affects me more now and I don't really know what to say. I guess they probably don't know what to say to me either and maybe they want to have a cancer talk or something and that is how they start it? Oh well.
On the plus side 2019 is at an end. What a YEAR. Here is to lots of good stuff for us in 2020.
I like Cerve or shea butter for moisturizing I do use Vit E on my scars that is where it gets the driest.
:-) Victoria
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2019whatayear yes I can relate about what people say now about hearing cancer stories and most not so good. In fact my mom knowing I just had surgery tells me about her friend just passed after she did so good with chemo, then had surgery and did well, all of a sudden got an infection it shut her organs down and she died 😳😳😳 has surgery at the same hospital I did so you can only imagine the panic that went in my head.
Wonder if I can start vitamin E now on my scars? I read somewhere that the dr can prescribe it? Wonder if it’s cheaper and better that way?
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Well you have most likely maxed out your MOOP (max out of pocket) for 2019 so if you can get a script today and get it filled it should be $0.00 or if not over the country vit E oil sold at most places -ie walgreens, cvs, target etc. Amazon
Yikes what was your mom thinking!
:-)
Vic
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Happy New Year to us. A new day, a new year, a new decade. A new beginning! I hope and pray this this our best year yet 💕💕
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forgot to say started tamoxifen today. I hope and pray I do ok with it.
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Hope you have little or no side effects JJ
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