Starting Chemo in December 2016
Comments
-
0 -
StayMom,
I'm not ever sure I can remember them all, but let me try: 1) Breast MRI, 2) another mammogram on the non-involved breast, because it wasn't done the day I found the lump 3) CT Scan 4) Abdominal sonogram, 5) echo-cardiogram 6) bone scan (nuclear medicine) and then got the Port. I worked really hard on Nov 14 to get all the tests I needed before I left to go visit MIL over Thanksgiving. And the last thing I did was get the port on Monday and leave town on Tuesday.
Some of this stuff made me really anxious because I know they were looking for cancer in other parts of my body. The worst two were the Breast MRI, which was loud and made me really anxious but also uncomfortable. The other one that was so bad was the Abdominal sonogram because they took about 50 pictures of the same place on my liver and that just made me very anxious. They found a cyst, but were checking to see if it was cancer. Just writing about it is making me more anxious.
The last thing I did last week after all the tests was get pictures of me at a photo studio and then later that day pictures with my family, while I still have decent hair.
0 -
good luck Twinsmawmaw. Let us know how you do.
Thanks Hanging in there. Thankfully none of the tests are worse than the breast MRI! Thankfully I have done that. I'm know scheduled for CT scan and bone scan before my chemo start of Dec 12. Fingers crossed that the spot on your liver is just an innocent cyst.
I had an appt with the Dr who will be doing my radiation at the end. I just feel like I can't get a break! I only had sentinel node removal and 2 were positive and 1 with extranodal extension (broke through the node) so I will also needn't to get auxiliary nodes removed after chemo and the rads will possibly mess up reconstruction. Sigh...
Happy thanksgiving to my American friends. Hope you find peace and joy with your families and friends xxo
0 -
Starting 4 rounds of AC and 4 rounds of Taxol on the week of the 5th. My MO says I can pick the day. Next week getting EKG and port placed. This is getting real now.
0 -
Welcome SCGirl,
You've come to the best place for support -- we're sorry you have to be here, but really glad you found us.
Please keep us posted on how your first treatment goes -- we're all here for you!
--The Mods
0 -
Hi, I start my chemo on Nov 30 so I joined the Dec group, since it looked like Nov's was well underway already.
I am getting my port placed on Monday. I'll be having dose-dense A/C 4x followed by Taxol 4x, followed by radiation. I was supposed to have a DIEP flap done during my mastectomy, but the sentinel lymph biopsy was positive, resulting in axillary dissection and the need for radiation, which meant reconstruction had to wait. My breast surgeon did not advise me that positive lymph nodes meant that reconstruction would be postponed, so it was quite a shock to wake up without a breast that I was expecting to have. And then to find out that the four "mild" chemo sessions (with no port) I'd been advised of had turned into 8 weeks of a more harsh regimen requiring a port plus now radiation... I was doing pretty well mentally/emotionally prior to my surgery, but not so much since then.
Last week I went for a second opinion about my chemo regimen. Although I am node-positive, I am premenopausal (46 yo), ER+ >99%, PR+ >99%, HER2-, and my Ki-67 score was a low 5%. I've read studies that say lymph-positive cancer below three nodes — I had two macrometastases (one with extranodal extension) and a micrometastases in a third — may not be recommended for chemo in a case such as mine, but my primary onc had told me that "no oncologist would recommend against chemo in your case" and thus did not do an Oncotype DX. I'm a little mad about this. The second opinion onc said she would have done an Oncotype. So I don't really know what to think. I've done so much research my head is spinning, and onc#2 told me I know more about breast cancer than most doctors. Medical science here is not exact and it is hard to know what to do; onc#2 was very upfront about this uncertainty and said she would be agonizing over the decision if she were in my shoes. I am very concerned about the potential for heart damage from the Adriamycin; I have read that it can be progressive even decades after treatment, and I have several risk factors (family history of heart problems, I'm overweight, plus the radiation will contribute).
But after looking at this board and reading about people who had reoccurrence after not having chemo the first time, I keep thinking, well, if I opt against it and the cancer comes back, I will really kick myself for a stupid decision. Onc#2 said the fact that I had positive nodes on a cancer that otherwise appears by the numbers to be non-aggressive is something to consider... what made it spread? I am going to talk to my oncologist about these concerns before treatment begins Wednesday (the holiday meant I wasn't able to get a consult appt with her to discuss it before the chemo date). Her nurse told me when patients get a second opinion she will usually call and talk to the second doctor, so I'm not sure if that is going to happen before my chemo in this case.
I'm grateful for all the information compiled in these threads. I have a better idea of what to expect and how to plan for it now, at least. My thanks to those who did this work for all of us. I am enjoying my last weekend of "normalcy" for a while before the next stage of this journey begins.0 -
Hi Myth
Sorry about all the new info coming up! It's frustrating expecting one outcome and then the plan changes! Our dx is very similar and I also had the macromet with extension and micromet with 2 nodes. Mine is grade 3 vs 2. The consensus from both of my oncs was that we need to b aggressive with chemo and radiation. It will most likely delay my reconstruction but I feel like my cancer is too aggressive to not do all treatment. Is the milder chemo still an option for you?
0 -
Hi all! Wanted to check in on the Dec thread. It's been a whirlwind few weeks! I found out my second tumor was HER2+, decided to do fertility preservation before chemo, had to drive 9 hrs to Salt Lake last weekend and spend 3 days there in a hotel and had eggs sucked out of me and frozen (17 eggs!) Flew to Minneapolis on Wednesday to spend Thanksgiving with family. Now we're driving home to Montana (8 hrs into a 12 hr drive). Tomorrow and Tuesday I'll work and then Wednesday is port placement surgery and right now first chemo treatment is scheduled for Thursday but I'm calling the dr tomorrow to see if we can start next week. My second treatment would be Dec 22nd, which is 1 day before my daughter's 4th birthday and obviously 3 days before Christmas...
I feel pretty prepared, I have some of the side effect remedies, some scarves and soft hats, people lined up to help out. I'll have a hair stylist friend probably come to my house and cut my hair next weekend. The ACS has a wig shop with free wigs for patients at my cancer clinic and my insurance also covers a wig, so I'll need to start shopping for a good one I like.
0 -
myth - I was also told that an oncotype was not needed as I would get chemo no matter what. I wanted it for my own peace of mind (if it was low score ) but my Cancer was moderately agreesive and grade 2 so it wasn't an option being that t was already on lymphnode. Another doc as a second opinion said she would have done an oncotype. So what's up with that.. Not sure. It's all so confusing to me.
One question on the lymphnodes, Would the doc have told me on the pathology report if any other nodes had micrometastis? I was told only one (which we knew from sentinel biopsy ).
And why would some people do dense dose of taxol. I'm doing every other week
0 -
Hello all,
I was just diagnosed on November 15th and will be meeting with the MO on Tuesday, November 29th. My BS has already mentioned that I will more than likely be doing neoadjuvant (sp) chemo due to the size and aggressive grade of my tumor. I suspect that after meeting with the MO I'll be beginning my chemo in early to mid-December. I've alway had great veins, but I'll be asking about getting a port.
I am NOT looking forward to chemo, but I'm so ready for them to throw the kitchen sink at this thing in hopes of getting a complete response.
Thanks for letting me share.
~Dee
0 -
Hi ladies,
Had my port installed Wednesday the day before Thanksgiving. So that was five days ago. It looks to be healing up OK. Somewhat painful if I move it by moving my shoulder. The only weird thing I'm having is the ligaments or tendons from my collarbone up through under my chin are very sore. Also the back of my neck and tops of shoulders same thing. It's as if I have strained the whole area. Had to take a pain pill last night. I've put a call into my surgeon about it.
Starting the chemo tomorrow. Kinda scared and nervous. I hate that I have to put this poison in my body. My niece wrote to me in an email "It will change you physically." Her mom had chemo. But I wish she hadn't said that. Not at all helpful or supportive. It's upset me. I sleep a lot. Struggling with this cancer and the loss of my husband 8 months ago. Sorry for being so negative here.
Thinking of you my sisters with loving kindness and hope for bright days ahead for all of u.
Pam
0 -
Hi Pam,
I got my port installed a week ago today. I still have sore muscles in my shoulder, back, and neck, and don't have full mobility in that shoulder yet. I went in for my first chemo treatment today, and the nurse told me that my port was looking great and healing up well. I mentioned how stiff and sore I still am, and she said that sounded pretty normal and it would gradually ease up over the next two weeks. Hope that's the case, for both of us! For what it's worth, the actual accessing of the port was a piece of cake. I was a bit worried because I'm still a little bruised and sore under the port, but I barely felt it.
Best of luck tomorrow!
0 -
I just wanted to say hi & wish you all well from a December 2015 chemo member! I am approaching my 1 year date and reading some of your posts is bringing back interesting memories. You can do it! It will go faster than you think! You will meet amazing people on this journey - many of the Dec 15 ladies are still together & comparing notes still. Hang in there - BCO is great to find answers to all your questions.
0 -
NextStorm - Yay that you are done your first treatment. Hope your side effects are minimal. Please keep us in the loop.
Pam - Reading your note about what your niece said almost brought me to tears. People unknowingly say things that sting so much. One thing people say to me is that "my life is forever changed and/or will never be the same". I want my life back and that is what keeps me going! We will get through this and I know many who look and feel just as fabulous! Good luck tomorrow!
0 -
Sammy3 thanks for your words of encouragement. Finding a lot of support here. How are you feeling/doing? Are you getting your life back
0 -
It is almost December. Good luck to all December Chemowarriors! My prayers and positive thoughts are with you
0 -
thanks Sammy3. So happy to hear from someone who's been through it on here.
Pamlab half your port process is done. Good luck tomorrow .
Next storm - how do you feel after your first treatment
0 -
Scaredashell - I feel a bit like I do when I'm coming down with the flu. My back and head are a little achy, my head is kind of fuzzy, my legs feel a bit wobbly and weak, I'm a little queasy at times (but not badly). I'm drinking lots of water, and trying to eat a bit every couple of hours. Overall, not all that bad so far. We shall see what the week holds!
The infusion itself was no problem. I even had a private room, which was a nice surprise, and the nurses were great. The whole process only took about 3 hours.
My Frank Turner quote for the day is: "Every step you take forward is another step you never have to take again!"
(I should warn everyone now that I'm very fond of quoting Frank Turner, one of my favourite songwriters.)
0 -
I hope all the US ladies, were able to somewhat enjoy Thanksgiving during this stressful time. Loved the pictures that were posted. I was traveling so didn't get a chance to keep up on the posts.
NextStorm - Glad you completed your first round! One down!! Sounds like you got the bonus with a private room. Looking forward to hearing more Frank Turner quotes.
Twinsmawmaw - How did you first round of chemo go? Sorry to hear you have to travel so far to have it done. Hoping your side effects are minimal. Hugs.
myth - So sorry to hear to hear your reconstruction was delayed. If I were in your shoes, I would definitely have opted for chemo too. I had an oncotype test done and I was in the middle or gray area - 23. My KI-67 was higher though 23 plus I had LVI even though my nodes were clear. So, it was a struggle to decide whether to have chemo or not. In the end I thought like you that I'd kick myself if I didn't have it and then the cancer comes back.
Jezikah - How overwhelming to have two different types of cancer. Good plan on the fertility preservation. Did you end up starting chemo or have it postponed due to the holidays and your daughters birthday? Glad to hear you are prepared with remedies, scarves and friends to help you. I have purchased a wig but need to start working on all the other preparations. Hugs.
Sammy3 - Thanks for the pep talk. I'm pretty sure our December 2016 thread will take all the positive thoughts we can get :-)
Pamlamb - Sorry to hear your niece upset you. I doubt she intended to.....but this journey is so emotional. Sadly, those kind of comments happen more often than you'd care to hear. I received a get well card from my niece after my surgery and she said " I hear you are feeling under the weather". Needless to say, that comment upset me quite a bit as well. I hope your first chemo treatment does not cause too many SEs. I'm sure you're nervous and we're all here for you.
gmmiph - Thank you for all the information on what SE to expect with chemo and when we should mention something to our MO. I don't get my chemo training until the day of my first treatment (Dec 15) although I have tried to read up on it a little.
Hanging_in_there - Good idea to get some professional pictures of you and your family. I always appreciate professional photos, but never take the time to schedule a session with a photographer. Sounds like you made the right call and got your port in advance of your first treatment since you had a little time to heal. That's great news that the additional tests showed the cancer has not spread. No doubt very overwhelming and emotional. Deep breathes......inhale, exhale slowly.
StayMom - my chemo starts the day after yours - Dec 15. I'm not getting a port although I did ask about it. My MO thought I'd be OK getting treatments through IV since I'm only having four rounds. I agree with you.....I want my life back too. So, that should be this groups mantra!! I imagine everyone else feels the same way.
0 -
I am definitely feeling more "normal" although there will really never be your old normal again. Which that isn't good or bad, it just is. A couple things to learn - know your cycle - know what days you will be at your lowest, etc. Especially since the Dec group basically has chemo during cold/flu season - you don't want to be out and about on your lowest immunity days.
For me on TCHP - it was a 21 day cycle. I was fine until ~day 4. Then I just had a low few days- not a lot of energy or appetite. But definitely I was as normal as possible. I went to my kids' events - choir, band, sports, etc. Taking a walk every day (even when it was cold) really seemed to help.
Have "stuff" on hand so you can be normal. For me that meant Immodium, some sort of hard candy, and lots of water.
You can do it and survive the holidays, I promise! Take one step at a time & don't worry about the large picture. This is a marathon, not a sprint! GOOD LUCK!0 -
HI everyone I am from the Nov chemo group, I just wanted to pop in and say HI and let you know how "not bad" my experience has been so far and you will all do great!! I am 46 and I have triple negative bc...My sister had tn also 3 years ago and she is doing great and cancer free! My mom had bc 30 years ago! she is also doing great 84 and healthy!!
I have my first chemo on Nov 18th, I used my veins ( no port) and it was fine..I am doing AC every other week for 4 cycles, then Taxotere every 3 weeks for 4 cycles...Chemo day was very "uneventful" I was nervous and unsure what to expect but it really was nothing, bring some stuff to do to keep yourself busy, my place actually had a massage therapist come in and give us neck/shoulder massages!
That night I just felt a bit jittery from the steroid, and I started taking my zofran about 8pm for nausea..,,,day 2 I was a little nauseas but really just tired so I stayed home all day and relaxed my Nuelesta on body patch went off about 4:30, it was nothing...day 3 in the late afternoon I woke from a nap with bad bone pain...I obviously didn't start taking the Claritin early enough..my advice start it ON chemo day or the day before that..and take it every day for at least 5 days after chemo....My MO had said I could only take Tyelnol for pain but it did nothing, so lots of heat packs and a hot bath felt better...I still had pain on day 4 so I called the MO and they said I could take Advil or Motrin...what a lifesaver! Oh I also had a bad headache for a few days...after 3 Advils all the pain went away :-) yippee!! Day 5/6 was the upswing for me, I had some constipation but drink LOTS of water, I took colace a few times a day and all was well :-) From Thanksgiving on I have felt totally normal, I shopped for a wig and I feel very prepared for round 2 on this Friday...
I am working through all of this (I am a teacher) and doing things with my kids to keep things as "normal" as possible...my advice is to keep doing what you always do (with in reason and with rest) the more you get up and move around the better you feel (even on those days you want to lay in bed all day) drink TONS of water!!!
You've got this! we are strong amazing women!!!
Becky
0 -
ILSunrise - Yes, it was crazy - but SO thankful my MO had my second tumor tested, it is very rarely done because at least 90% of the time, the smaller tumors are the same as the larger one according to my pathologist cousin. So glad we found out so we could at Herceptin to the treatment plan and lower my chances of recurrence.
I did get the first round re-scheduled for next Wed (12/7) so that my second round will be after daughter's birthday and Christmas. And we're now doing family photos this Saturday, so it will be good to get that done before I start Chemo.
Still doing port surgery tomorrow, and hope to be back to work Thursday, but might take it off. I'll be doing 6 rounds every 3 weeks of Cytoxan, Taxotere + Herceptin. And then the full year of Herceptin every 3 weeks.
Number 1 pet peeve is people telling me I should "take it easy" and not work so much. 1) I love my job and my co-workers 2) it keeps my mind off everything else, and 3) I am a fast healer, I know my limits, and I will go home if it's too much (there is absolutely no pressure to be at work, and I have generous co-workers who donated sick time, so that's not the issue). I went back to work 3 1/2 weeks after my Bilateral Mastectomy & Recon because I was bored at home and feeling fine. Hopefully fast healer = fast recovery from chemo...
Thanks for all the encouraging words and good luck to everyone!
0 -
Becky thanks for the amazing run down of your events past two weeks. It's so helpful.
Jezikah - pictures sound like a great idea. Enjoy the day!!
Sammy3. Thanks for your support. I am trying to take one day at a time and enjoying waiting for chemo to start but always getting anxious. I'm already grateful for be great group we have.
0 -
Jezikah - glad to hear you got your chemo postponed so your second round will be after your daughters's birthday and Christmas. Hope the port surgery goes well tomorrow and you're not in too much pain after it's over. I see you have an ATM gene mutation. I have a variant of unknown significance with the ATM gene and am participating in a clinical trial. Did your MO or BS plan anything differently in your treatment plan based upon that factor?
0 -
I'm back to report from my first chemo session.
I got my port on Monday Nov 21, it was a bigger deal than I expected. I'm so anxious I can only read a little about breast cancer and everything related. I take in a bit by bit. My sedation was called "twilight", but it seemed like "afternoon" to me since I was hearing all nurse and doctor conversation and even asked some questions (before the surgery).
I ordered a Penguin Cold Cap to preserve my hair. My husband practiced for a couple of hours Sunday night 11/27 for my first chemo, Mon Nov 28.
So the chemo wasn't that bad. I had A/C and it was done in about 2 hours. I arrived with really high blood pressure (no surprise there, so they let me calm down for awhile so I could get my BP to normal. I started to cry when they started clearing the port with saline solution because all of a sudden it became real. But the actual chemo lasted about 2 hours.
***** Beginning cold cap discussion, skip if you are not interested ****
But because I'm trying to preserve my hair, the process with the Penguin Cold caps was brutal. It was much longer than the video suggested, because they give you your own schedule based on age/ hair type/ chemo regimen and I'm not all sure I answered a lot of questions. The caps are stored in dry ice and get to your head at -29 to -31 degrees Centigrade. You have to protect your forehead and ears from frost bite, which we need to do a little better next time.
In case anyone is interested. I'm going to outline what it was for me and the cold caps.
9:00 pickup dry ice from beer/wine store (they knew I was coming and had preordered 45 lbs)
9:10 Start driving to medical center.
9:20 stop on highway side to put in first cold cap in cooler per instructions
9:40 arrived medical center, put in second cold cap in cooler
10:00 waiting room, put in third cold cap in cooler
10:10 put on first cold cap in the weighing area of the oncology center, since the timing is specific.
(Chemo was supposed to start at 11:00, but actually started at 11:30)
My husband changed the caps every 20 minutes for the first 3 and then every 25 minutes until 7:45 pm
So I had a 4.5 lb cold cap on my head from 10:10 am until 7:45 pm
My husband was in a constant rush to a) get proper next cold cap from cooler and check temps b) remove old cold cap c) put on new cold cap with all the extras because I have thick hair d) put away old cold cap in the cooler in the proper order. So he had about 10-15 minutes to rest before the next cycle and this went on for 9.5 hours. We left medical center and were home by 3:00 pm, but had to continue the cold caps until 7:45. A friend babysitting my son helped with the cold caps at home.
I'm committed now but didn't realize the extent of this. There was one page in the 50 pages they sent me that said the temps (this was not a surprise) but the fact I had to do 5 hours of post chemo cold caps (surprise). And I didn't read that page until the day before when we were practicing. We were out of town during the cold cap delivery so a friend received them and put in our fridge. One thing is Penguin doesn't send you the schedule or all the literature until you buy. Or not until I bought (rented).
It was brutal because it seemed like only 10 minutes between changes, but I guess it was 25 minutes. I couldn't put on my glasses and I'm pretty blind without them. I jerry rigged an old pair and taped them on with surgical tape, which was sort of like the rear view mirror on your car "Things are closer than they appear". Couldn't play with iPad or watch TV due to issue with vision. I listened to books on tape through some very big head phones I keep for airplanes.
The weigh on my head for 9 hours hurt my back, will need a back support next time. I had a sleeping bag over me and a blanket around my shoulder and was still shaking some of the time, but I'm not sure it was from the cold, I think the whole process was pretty difficult to deal with.
***** end of cold cap discussion.
Day 1 (Chemo) when I got home, I was tired and a dizzy on my feet, so used a cane to get around. I was surprisingly hungry at night. I didn't eat much during the day, even though I brought lots of food. I drank plenty of water.
Day 2 I was mostly fine, but didn't sleep well the night before and took it easy. Drank plenty of water, started to feel not so good at 8:30 pm so laid in bed until it was time to go to sleep, and didn't sleep well (this is ongoing) I felt a little sick in the middle of night (no puking), just not great.
Day 3 (today) is supposed to be a bad day, but I'm not having a bad day. Drove for the first time today, need to get a shoulder belt fuzzy thing to protect my port.
Edited to add Day 4 -- this is supposed to be a bad day, and it is. I am tired, a little queasy (not puking). I did get out for a walk today (first since chemo) . I went with a friend, took a cane (that I already owned due to ACL surgery years ago) because I was not that stable on my feet and I had to walk much slower. But it was a beautiful day, I know that exercising will be good for me. Back in bed and resting. And for the cold caps, I was able to wash my hair for the first time in a week, but I have to be gentle, wash in sink, use little soap and no blow drying. I bought a silk scarf to wear on my head in the cold (Cold Caps doesn't want your head to get hot).
*******
Thank you to all the ladies for all the updates. Cancer feels very lonely otherwise. I'm amazed at all the research Myth has done, and hope to be able to research even 1/2 as much. I'm trying to keep my anxiety at bay, which is one of my most difficult problems.
You are all strong women, some of us just don't know it yet.
0 -
Hi. Nice to meet you and have a chemo buddy. I was just diagnosed with breast cancer. Here is the link to my first post on the "waiting for results" board.
https://community.breastcancer.org/forum/62/topics...
I don't know yet the ER,PR, HERP-2, or ki67 status. I have a Grade 2 tumor/s and they are intraducular carcinoma, infiltrative.
I was told I am maybe a Stage lll (maybe 2). I will start chemo next week and I won't get my mastectomy until I am done with chemo because the tumor is so large and lymph nodes are involved. I will be getting a breast MRI next week to get a better look at the tumor/s to establish grade and also a PET/CT scan next week to see if it has spread.
-Michelle
0 -
I'll have to dig out my genetic report, but my ATM mutation was considered a contributing factor to the cancer. And the reason we did prophylactic removal of my right breast. According to the genetic counselor, the BC/ATM gene link is a fairly new discovery, so there aren't any specific or different treatments yet. I'd be interested to hear more about the trial if you want to shoot me a message.
Also port surgery today went just fine! Shoulder and upper back are sore, but took my drugs so hope to sleep well and go to work tomorrow.
Hanging - thanks so much for all the info fromyour experience. I was still looking at cold caps last night and debating, but after reading that decided its not really for me. But best of luck to you! Plus I can't really justify the cost right now and insurance won't cover it but will pay for whatever wig I want- so I'm just going to find the best one I can.
0 -
Hello to all December Chemowarriors,
Just popping in to say hi and wish you good luck as you are about to start your own journeys. All of you can do this by helping and supporting each other. With faith and sincere prayers, nothing is impossible.
Gina
0 -
Hanging_in_there - Thanks for the play by play on your chemo experience. It sounds very overwhelming especially with the cold cap thrown into the mix of things. I asked my MO about cold capping and she didn't want me to consider it. Hang in there. You can check the first round off your list and at least know what to expect going forward.
Jezikah - I can send you some information about the ATM gene trial, but I think it's geared more toward if you have a variant of unknown significance (VUS). My genetic counselor told me since it's VUS it should not play into my treatment option. But it still makes you doubt some of the choices you make and I hope I don't regret going the lumpectomy route versus the mastectomy route.
Michelle - welcome. The waiting game really does make you crazy. Hugs to you as you start this journey. It does really help to have this forum to ask questions and share your experience with others.
0 -
Micelle welcome!! Glad all be ports and initial treatments seems to be uneventful. Thinking of everyone.
0
