May 13, 2017 11:24AM Lordhelpmetoo wrote:
Tara, I will have ps apmt this Monday, id love to do nipples sparing but because tumor was in areola. I'm almost positive I won't be able to, at least on that breast
Regimens, side effects, and support from others going through chemo.
Posted on: Mar 12, 2017 01:12PM - edited May 9, 2017 05:17AM by Tara17
many ladies on this site have mentioned how useful it is to participate in a thread with other women goign through chemotherapy at the same time. Therefore starting a thread for women starting chemotherapy in March 2017 and continuing chemotherapy through spring and summer of 2017. Wishing all the ladies here all the best!
So Inspired by all the strong supportive amazing ladies going through the challenges of chemotherapy together!
Below i am cutting and pasting part of a post from soxfan75 --an extremely helpful post worth a read for anyone preparing themselves for mastectomy :
"I imagine the type of mastectomy and reconstruction option you end up having ultimately affects the pain. I can only speak about a mastectomy with tissue expander placement. If this is what you're having, you'll probably feel a lot of chest pressure after surgery because they put the expanders under the pectoral muscles. I don't recommend laying down (even partially propped up) unless someone is there to help you up. I like to think I'm in pretty good shape and getting myself out of bed was the most painful for me. I slept practically sitting up for a good two to three weeks.
The drains are a pain. You won't be able to shower until they come out and that could be up to two weeks, so be prepared for that. I didn't want to lean into the sink to wash my hair so I went to my salon every three days and had my stylist wash it. My surgery was pre-chemo so I'm not sure if that will be an issue for you.
I look at the scarring and get a little down wondering if it will be less noticeable. The physician assistant (a BC survivor) at my plastic surgeon's office showed me her reconstructed breasts a couple of weeks ago and it made me feel so much better. I'm sure the scarring will fade.
If you're doing tissue expanders, I'm not sure what bra size you'll be going up to, but don't waste a ton of money on special bras because as you get "expanded" you may have to change bra sizes. I found these $5 Fruit of the Loom bras at Walmart that were extremely comfortable. They have pockets with removable pads. I also found (at Walmart) these water-filled push up pads that I bought in two sizes, B/C and C/D. They were $7 for each set and fit nicely into the bras. I found those extremely helpful in adding volume to my somewhat flat chest. As I got fluid added, to one side and not the other, I just used the bigger pad on one side and the smaller pad on the other to even them out. They were fantastic and so much cheaper than the $50 inserts you see on some mastectomy product websites. I believe they also have silicone push up pads but I didn't find those to look as natural."
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May 13, 2017 11:24AM Lordhelpmetoo wrote:
Tara, I will have ps apmt this Monday, id love to do nipples sparing but because tumor was in areola. I'm almost positive I won't be able to, at least on that breast
May 14, 2017 06:29AM Tara17 wrote:
lordhelpmetoo--wishing you a very good appt tomorrow, keep us updated
I have treatment #11 tomorrow of total 12, very tired from all this, so cant wait to be done! And then on to mastectomy. I am re-reading soxfan 75 posts about surgery --very helpful
May 14, 2017 08:24AM Lordhelpmetoo wrote:
Tara good luck with your treatment tomorrow! I will also read soxfan's post about surgery
May 14, 2017 07:32PM Soxfan75 wrote:
Hi Ladies - I ran my first 5k since before surgery/chemo, and while it took me 32 minutes to do it, it felt soooo good. I'm getting ready to run another one Friday night and hopefully I won't feel so winded this time. :)
Tara17 - My tumor was right under my nipple so I didn't have a choice on that one. I had to get a regular mastectomy. On the side without cancer, I opted for a skin-sparing mastectomy. Post surgery, the nipple on the skin-sparing side still looks like my nipple and there haven't been any complications relative to that. One issue I am having is that the surgeon scraped the breast tissue off of that side so well, that the skin in one area (approx. 1 inch in diameter) was scraped really thin. I was told my skin is on the thin side anyway, so getting what they call a "really good" skin sparing mastectomy was going to do that. Ultimately, it's not going to be a major issue, but I can't have my tissue expander on that side fully inflated until they're sure the skin is completely healed so that area doesn't get stretched even more.
With that said, I don't regret choosing to do the skin-sparing. I love looking in the mirror and seeing that I still have that part of me, even if i don't see it on the other side. I've posted this before but when I look at the skin-sparing side, it still feels like me. I can look at myself and still feel somewhat whole. When I look at the regular mastectomy side, it doesn't feel like it's part of me. It feels like an attachment that I can't take off. It's hard to explain, but if I had the option of doing a skin sparing on both sides knowing what I know now, I would do it without hesitation.
I hope this gives you another perspective, but like Bringon2017 said... you have to do what's right for you.
3dogs2cats1kid - I'm sorry you have to be here, but welcome to the group. I've been having the same issue with Perjeta. Have you been using Immodium? I find it takes a couple of them before it starts to kick in. I haven't had a ton of neuropathy yet, although I do feel it in my feet here and there. I've been icing my hands and feet during chemo to hopefully help keep it at bay. Not sure if it's working, but like I said, it hasn't been too bad so maybe it is.
May 15, 2017 06:34PM - edited May 15, 2017 06:35PM by Castigame
Part 2, 4DD Taxol.starts in 12 hrs. Swallowed 5 decadrons already 5 more to swallow in about 6 hrs. I hate steroids! Especially decadron in multitudes. I also hate that weight gain is a possibility. I plan to drink water every time I want to eat. The only reason I took them is it helps w arthritis which is my main concern w Taxol.
Just found out I walked this past week at least 8000 steps per day on top of multiple hrs of stretching, massaging surgery scar and manual massage. i should continue.
I told my DH this war is for me first. I am not going to let some freak accident like extended diarrhea to dictate me what to do.
May 16, 2017 04:43AM Tara17 wrote:
Rebamacfan--you have a core of steel, girl that comes through everytime you state a resolve --like you just did with that wear statement above. Yes for all of us, ur eye is on the prize --the side effects on the way, sucky no doubt, are the price we pay to get to our goal. One can hope that every side effect is temporary and has a solution and that is the scenario I wish for all of us
May 16, 2017 04:46AM Tara17 wrote:
soxfan75 --thansk so much for the detailed advice re surgery. My tumor is not near the nipple , but i think that wth aggressive histology , nipple sparing isnt advised anyway --with high grade , her 2 positive disease, i dont want to take any chances and dont plan to keep the nipple. I have found that there are some excellent nipple prosthetic companies online. Some of them are not cheap, but it is a non invasive way to have a nipple after surgery. So i am thinking of going the route of a custom prosthetic silicone nipple . Thanks SO MUCH for always sharing a detailed perspective. Its incredibly helpful
May 16, 2017 06:51AM Lordhelpmetoo wrote:
Tara, had my appointment, with my ps. Now it's real. I also did my pre op and registration. The nerves are starting to kick in. I wasn't aware mastectomy was that long. I'll be having immediate reconstruction
May 16, 2017 10:00AM Castigame wrote:
sitting on my infusion chair after a long wait. In addition to 40 mg decadron which made me so wired gave me glucose count of 284! My glucose is about 110. I was even expecting 100 or lower since I have been exercising
I had to swallow 18mg of the same. I dont want to eat or drink for the next few days. Yes plain water i will drink plenty. On a bright side it does not look like steroids will bring weight gain for me. 284!
Let me calmed down i am no longer hypocalcimic or anemic
Cant wait to go home to see my dogi and freak her out with Neulasta light
May 17, 2017 03:09PM kimburke wrote:
Starting to feel a little better and less icky today. It has been very tiring after the 4th and final chemo. I have been sleeping or just laying down and resting since the treatment.
LordHelpMEToo- Good luck on your upcoming BMX .
Tara17- You have one more treatment to go! Very Nice !
Rebamacfan123- Where do you find all that energy? WOW! I don't even complete my 5000 steps for the day. Now I feel bad and need to make an effort.
Soxfan75- A marathon??? Congrats!
3dogs2cats1kid - Welcome to the group. I have heard Vitamin B6 helps for the neuropathy. I had bought it , but didn't try it. I was on the B complex and the neuropathy didn't get too bad for me .
MommyErin- Hope you are well.
Six month ultrasound check up on the left breast is good. No sign of cancer on the remaining breast. Will have another ultrasound and mammogram in six months time again.
I am so happy chemo is written of the to do list now. Now to "will" the hair to regrow (lolololol) , stop wearing chemo beanie caps. Cant wait to start having my raw vegetables and salads. Diet change again and get back to some sort of normalcy in my life. Looking forward to not being so tired and winded all the time and hope the hot flashes settle down again.
My next step is Tamoxifen and this starts in two weeks. Also, My ONC wants me to do a PET-CT scan and take a closer look at everything . There is a dermoid on my right ovary that he would like to be removed. and then there is reconstruction, So, I am not finished with doctors yet for a while.
May 17, 2017 06:01PM Soxfan75 wrote:
Tara17 - Glad you came up with a solution. I never thought of doing a prosthetic nipple, but I like that it's a non-invasive approach.
Lordhelpmetoo - Sorry your nerves are starting to kick in. You'll get through this. We're all here for you.
kimburke - That's great news on the left breast. You must be so relieved to be done with chemo. I hope you start feeling better soon!
May 19, 2017 09:12AM Limonia wrote:
I really appreciate the peeps on this thread. Thank you!
It's been a bit of a rollercoaster. 8 weeks post op my incision site is still not completed closed (very unsual – for those of you having upcoming surgery, please do not worry, I don't know anyone else who had this). This has deleyed chemo. The date has been set for first week June, which makes it 11 weeks post op – close to deadline of best practice. I am concerned bc if it's not fully healed by then, it's not going to heal when I'm on chemo.
On that note, I'll be on FEC D. Any comments or suggestions welcome J. I'll be posting at the time with observations. I'm in the process of getting the things to prep (eg. mouthwash, etc). Any encouragement welcome….
Thanks for all of your commentary and suggestions – I'm going to check out the link you suggested.
The bump in the road is that my oncologist will not support the use of cold caps at her clinic/hospital. I would need to change doctors, which is very upsetting to me although I suppose I could do so – Toronto has a good network.
Ps – I am so impressed with your run, am trying to remember that it will get better- you are very encouraging.
Kimburke – thinking about you and your pup…they are true bundles of love…
Tara17: In my situation re: BMX: nipple sparing was not an option. I find that the doctors are a good source of indication whether or not it's medically appropriate or recommended. I imagine that (type of reconstruction…if), may also play a part. In my situation the general surgeon and plastic surgeon were two different doctors so you may want to get feedback from both of them.
Good luck on tx # 11. If you have any other q re: surgery – DM me, happy to converse J. You too LordHelpMEToo J
MommyErin – you may have already made decisions J, to echo Soxfan75- getting clarification from your plastics may be very helpful. My understanding is that they complete all fills *before the radiation, because they cannot make any changes during the radiation process. They mark our skin to determine where the radiation goes and there can be no changes to the breast during that time. Also, I believe that once radiated, they do not expand the TE because skin/muscle that has been radiated is different/tighter/contraction. I'm not a dr - J, just my understanding from my experience.
May 19, 2017 09:15AM Limonia wrote:
Oh...something else. I have long, curly hair that has not been short in 25 years. My hair grows slowly and it would take literally 10 years to grow to this length. I'm on my way tomorrow morning to get it cut short. I'm bringing bubbly wine and OJ for th 9am cut. 2 of my friends are coming. I'm freaking out, although it will be worse when it falls out. Any words of encouragement would be much appreciated, and I send you all virtual mimosas !
May 19, 2017 09:21AM Tara17 wrote:
Limonia --if you have hair that is that long, then can you look into making a wig with your own hair? Or donate it for makign free wig for kids ? It is so special that you'll get hair that you havent cut in that long that i think doing something special and symbolic with such beautiful hair will have meaning during a difficult time-- sending all good vibes your way for your haircut!
May 19, 2017 10:00AM - edited May 19, 2017 10:00AM by Tara17
soxfan - i have found two prosthetic nipple options. This first link is to a guy who makes prosthetic ears, feet etc and now makes prosthetic nipples m.youtube.com/watch?v=2dmxpCHjc1o and the second is a lady who is a BC survivor herself http://www.pink-perfect.com/.
Kimburke ---hope your fatigue is getting better! Glad your six month check up was good. How is your cording, your nails and hair? How is yoru dog? I do hope your dog is doing well
Mommy Erin --we havent heard from you in a few days, hope all is well
Lord help me too --surgery is on may 25th right? Completely understand re nerves . I am already nervous about surgery! You are strong and you will make it through this! We wil be on the other side of this before we know it!
Rebamacfan--- hope your sugars get better, wish you a good week ahead!
Treatment #12 for me on monday. Then unilaterall mastectomy for me on june 7th
Hugs to all
May 19, 2017 12:00PM Limonia wrote:
Thanks Tara :-) - good suggestions - will look into! OOhhh - I've cut myhair since 1990 (crystal gayle anyone lol), but it's always been long hair since then.
thanks for the links as well :-)
May 19, 2017 12:52PM Tara17 wrote:
Limonia --hoping your wounds close soon and you start chemo! Its normal to feel scared before starting chemo, but the oncology nurses typically are great resources and they manage side effects very well these days. This group is a great support system
Cyrstal gayle length hair ! --you can make your own wig and have spare to donate for locks for love. Do it! I think there are wig companies that will make a wig of your own hair
May 19, 2017 11:26PM Goobey72 wrote:
Newbie here but started TAC as neoadjuvant in march. I am Day 7 of 4th round, 2 more to go. Day 7 means I feel better so I usually stay up way too late enjoying just not feeling like total poo!
My tumor has shrunk and hoping it will keep shrinking. Anyone else out there with chemo before surgery?
My toughest symptom at this point is facing 2 more rounds. I work hard to remain positive and strong but here, I won't lie, I hate chemo + 6 days after
May 20, 2017 05:59AM Tara17 wrote:
hi Goobey72 - sorry for the reason you have to be here but glad you found us for support . So glad to hear that your tumor is shrinking ! That is good news - hope it continues to shrink and shrink . The chemo side effects do suck - sorry about your day 6 after chemo but glad you recover and move on to thyour next cycle.
When you think of how tough it is to go for two more cycles ; just think back to how far you have come! You can do it !!
May 20, 2017 06:18AM Tara17 wrote:
Limonia please check out tips on this forum , link above ,as you start chemo
May 20, 2017 09:39AM Goobey72 wrote:
Limonia-did you cut your hair today? I cut mine before chemo then shaved it before day of projected fallout. For me it was a sense of control. Others were a little insensitive about it, my mother in law said "please don't shock everyone with shaving your head until you know for sure it will fall out". Yep, I have that kind of mother in law. I listened to the mo who has unfortunately done this many more times and he has been honest with me all through this. I read so much on these forums to get prepared and now I now the support here is invaluable. Keep fightin
May 21, 2017 08:35AM Limonia wrote:
I cut my hair yesterday...and it went okay...actually more than okay ;-). Some of my friends met me at the salon, I brought wine and OJ, and my salon guy was super sweet and did an amazing job. The last time I had short curly hair, decades ago, it was a disaster, and the time of trying to straighten it out and all people could create was pyramid head. Now it looks totally different. It's wild and cute and above the shoulders and like 'fusilli' hair all over. It's adorable. This has given me some sense of relief because although I will need to shave my head in around 4 weeks, I can sort of see what I will look like in around 2 years post treatment and can see that I can 'wear' shorter hair. Not super short (huge ears!) but short. It feels a little naked, but still feminine. It's weird to not be moving my hair, and the hair tie I've had on my wrist for 25 + years is not needed! Big hugs for your support. It is also the same length that if the curls were straightened, they will be someone the same length as the wig I'm thinking of...
thanks for the link!
thanks for checking in – and for your MIL story – egads!! ;-). Personally, I
know people mean well, but I can't hear anymore 'it will grow back' from people
who have not been through this. It's not just the hair (which will take 16
months plus before looking normal on me), but also the eyebrows and lashes. I
made a mistake with my eyebrows when I was 16 and the section never grew back!
;-). So I find myself irritated with people who have not gone through this but somehow think 'it will grow back' is a reply…."it sucks" is a perfectly good response to the fear of losing one's hair !
May 21, 2017 03:35PM Limonia wrote:
Tara - It helps:-). I think one of the things that freaked me out so much is not only all the loss and everything, but that it would take around 7-8 years before my hair was at the current length when it was long (it goes verrrryyy slowly, always had). And so it was hard to even imagine myself with shortish hair since it was so awful when I was younger. Being able to see the short hair made me realize - hey, it may not be now, but even in 2 years it will look cute. Maybe even in around 16 months it will look a little too short, but still cute.
One thing I learned from this (for those of you who have quite long hair), is that it was realllly helpful for me to have tried on short wigs before I cut my hair. There's no reason for me to get a long wig, it's going to be hot and humid this summer, and it's not going to look the same as my real hair anyways (thick, crazy and curly), and so I had already decided on a 'blow dried' look of shorter hair to just above shoulders. Trying on those wigs *before* cutting my hair helped me see myself as a short haired person. I may not go with any of those specific wigs, but it gave me a visual before the real thing.
May 21, 2017 09:54PM Limonia wrote:
Tara, I have the hair in a braid! I have a friend who I think wants to sew it as a fringe that I can attach to a hat or scarf - I'm not sure. I don't feel stronly either way. I also have a friend who has told me since I'm 20 years old that she wants my 'fusilli hair', so maybe's now? ;-).
Tara, ask me anything you want - I'm here. You're going to be ok!
Here are some things an incredible neighbour bought me before my surgery that I did not even know I needed, but I did! I used all of it.
1. a soft super lightweight open front cardigan (no buttons or anything) - it actually was more like a shawl as it went over my shoulders (no sleeves). I basically wore it at home for 2 weeks over a loose tank.
2. bag of ricolla honey throat lozengers http://www.ricola.com/en-ca
(because the throat is sore post intubation - who knew!)
3. an organic simple fragrance small face mist
4. One of those donut thingys that you can tie around your neck when you fly/train for neck protection - keeps your head up
6. HUGE water tumbler with straw - something like this: http://store.starbucks.ca/drinkware/cold-cups,en_CA,sc.html
Here's what I brought to the hospital:
- a bunch of throat lozenges in a baggie
- a few baby food fruit thingys - anything you can pick up - like this (https://ca.iherb.com/pr/plum-organics-organic-baby...
so that if I were hungry (and there was no food) or if I didn't want their food, I would have soft easy and yummy fruit
- a little perfumed cream (tiny, tiny) that I put under my nose and on my wrists when I felt like it
- hand cream
- huge sweater I could just drape over me on the bed
- sleep mask
- ear buds
- sweatpants and zippered sweatshirt with hoodie to wear when I leave
- super loose camisole that could get dirty - didn't care.
- baby wipes small pack
- baby facecloth (I use these all the time - get them at the dollar store). was helpful - I would dampen them and rub my face
- toothbrush, toothpaste
Best advice I read was to have everything ready on the night table so that when I got home I could just go to bed and it would all be there:
- extra lozenges
- water tumbler
- lip balm
- proper facecloth in case I needed to wipe anything
I also bought a pillow wedge for first couple of weeks. I found it helpful to have 4 pillows. There was the pillow wedge up, then a pillow, and a pillow for under my knees to take the pressure off my back, and one pillow under each arm to elevate the arms. I won't lie - it wasn't super comfy, but it's just for the first while, and the pillows help take the pressure off.
1. I don't know about you, but I thought I would be rolled into the surgery on a bed. Nope, they walked me into the OR where I got on the bed there. Just telling you in case it happens to you as I was totally not expecting that.
2. TAKE THE MEDS. TAKE THE MEDS. As long as you are not taking the drugs constantly for a longer time than your doctor deems appropriate - DO NOT second guess this. take the meds. All of us have different pain thresholds. Mine is pretty low. The day I thought that a nurse was suggesting I pretty well stop taking the big drugs and just take tylenol, (and I felt bad about that and thought I should do that) I had a HUGE setback the entire day and night because I could not catch up to the pain. Do not wait until the pain is a 8/9 - take it when it's around a 4 - so that you will always have the pain controlled. Talk with your doctor about any concerns and their recommendations. Remember - taking pain meds when there is actual pain IS using meds appropriately. also, there is a different pain for TE than no TE. Every woman I know with TE used the meds longer to help them move to the time they were more comfortable. There was still discomfort and some pain, yes, but not like at the beginning, and it was being managed.
3. If you live with others (sorry, I'm not sure your personal situation), then rely on them to do things for you. Do not feel like you need to do anything at the beginning other than do the stretches/exercises you need for mobility, manage the discomfort, sleep, ask for what you need. If you live alone, then arrange beforehand some nice things people can do for you. You will be okay, you will not be lying incapacitated for days :-). BUT it does help to have someone help to clean, change your linens, to call for food if you need, etc/
4. Log your meds in a notebook. That way you don't have to wonder 'did I take the meds already?) and you will see the improvement. I used a notebook - super simple, three columns, and I would write the time I would take the meds (and which), when I did the exercise, and any observations (like difficulty sleeping, or tightness, etc).
5. If your hospital offers it, try to get into a pre op class where they review what to do with the drains, general info about pre/post and review the exercises to do. If they don't have that, ask for the booklet they may have so you can review any questions before surgery.
For the first several weeks, the best clothes for me were drawpants or yoga pants (no zipper, just easy to pull on) AND anything that I could zip up the front (with a hoodie even better!) AND I could not have gotten through it without oversized, superloose tank tops from H&M. Not the fitted ones - nothing that would require me to pull tightly something tightly over my head, just these super loose tanks that were so loose I could pull the straps basically over, that i would wear around the home.
anything else - just ask! whew - hope it was not overwhelming!
May 23, 2017 05:55AM - edited May 23, 2017 05:57AM by Soxfan75
Running another 5k today. Got to get it in before treatment #4 of 6 on Thursday. I'm so ready for these to be over. Does anyone else have a chemo port? Mine is so ugly. It just sticks out so far. Unfortunately I'm stuck with it until next March which is when I'll finally finish getting my targeted therapy drugs. I was thinking about getting it taken out in July once I stop the chemo drugs but that means they'll have to give me the targeted therapy drugs through an IV. Anyone else get their treatments through an IV? Does it hurt? Have you had any issues?
Limonia – I'm sorry to hear your onc won't support cold capping. You would think that they would encourage anything that helps the emotional state of their patients. My capping hasn't interfered much with my treatment. Last time out, I had to delay one drug by about 5 minutes to ensure I had the caps on my head for the full hour prior to chemo (as recommended), but my nurse was completely fine with it. If it's too stressful for you to change doctors, then it's probably not worth it. I'm so glad to hear your haircut went well. It's hard to get used to such a drastic change, but you were smart to do it well in advance of losing it. Great advice for those still facing surgery btw. Especially the part about logging your meds in a notebook.
Tara17 – Thanks for the links. I'm still weighing my options, but I'm leaning toward having my PS re-create the nipple out of skin and then getting it tattooed by an artist on Cape Cod that specializes in nipple tattoos. As far as the numbness goes, it's a little hard to tell where the numbness ends. It's not like it's an abrupt change, but if I had to guess, I'd say it's like an inch above where tissue expanders stop. It's a little weird because I can still feel pressure, but I can't feel pain. I hope your 12th treatment went okay yesterday! Isn't that your final one?
Lordhelpmetoo – Not sure if you're checking the thread, but just know that I'll be thinking about you on Thursday and praying for a speedy recovery. <<Hugs>>