Starting chemo July 2014
Comments
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knmtwins: here's a pic of chemo #1 with bags of ice on each hand and foot. The hospital provided these bags with crushed ice and there's a dry spot in the middle (or use a second baggie). Slip your hands & feet in a thin sock, then a dry baggie, then a bag of ice...
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hi ladies.
Well I am back in hospital :-(
Spiking fever of 102.6
Feeling a little sorry for myself (thought I was 'done')
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raindew so very sorry you are in the hospital. I hope you get to go home soon. When did you have your last chemo?
Hugs
Nancy
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Knmtwins, I knew from the outset that I would have BMX with no reconstruction. Let me tell you why. One of my dear friends of many years is nurse to her ob/gyn husband. When our mutual friend had BC years ago I watched how they cared for her, and when I found my lump, I knew I wanted them to take care of me. I called her when I had an appointment for mammogram & US, and she went with me. She has seen enough BC in her career that she was pretty sure when she looked at the US that it was malignant. Afterward, she took me to lunch (it was my birthday) and she laid out the brutal facts. I could certainly opt for a lumpectomy, but chances of recurrence are obviously higher if there is still breast tissue. And reconstruction, no matter how well done, can only be cosmetic. The breasts may look real under clothes, but they will never feel or function like the real thing. And chances of rejection or infection are actually pretty significant. And if there is a recurrence, reconstruction can make it difficult to find. Also, if you have to have rads, it can seriously damage reconstruction.
That said, I know that many of you have chosen reconstruction, with little or no problems, and that is your choice. I wonder how much of the decision of some women to have reconstruction is due to the pressure of plastic surgeons for whom it is their bread & butter. Even though I was adamant with my surgeon that I would never reconstruct, she apparently left sufficient skin for me to do so, which I'm very unhappy with. I really don't want to put my body through any more trauma or surgery, but I would have preferred to be flat rather than deflated.
And I just want to say, I've never even been fitted for a prosthesis, and I go flat all the time. Not one person has ever seemed to notice.
I hope I haven't offended anyone. It just seems barbaric to me. Sorry.
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knmtwins, I will be having a BMX because my breasts are dense, I've already had a biopsy on the other breast and I'm not interested in worrying about biopsies about whatever else looks wierd in my dense breast. Another interesting thing at seminar was that with the director of bc who was giving it, he said even though mastectomies do not decrease the chances of recurrence, or spreading, all his patients did not regret it for same reason as I stated.
I do want reconstruction, as I am 42 and I guess body image is still important to me even if it's just under clothes.
Are u getting rads AFTER surgery? I haven't seen a surgeon yet and so I don't know the details of what kind of reconstruction u can get on radiated skin.
U can PM if u want.
Box, let us know what happens!!!
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RainDew: oh no, so sorry you're back in the hospital, hugs and prayers and hope you're back home soon
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boxofrocks.... -- Best wishes for an uneventful and relatively pain-free delivery!
kmntwins -- I asked my port surgeon about limits on what I could do, and he really didn't mention any. Yeah, I've got to sort out the kids' clothes here, too. It's just getting cooler, and I'm going to have to put away their summer things.
I haven't made any decisions about surgery yet, as I'm still waiting on the results of my genetics test. If I don't test positive for BRCA, I'm not sure I'll opt for BMX or how I'll feel about major reconstruction. I would lean toward lumpectomy with minimal reconstruction because I just need to look semi-normal and to get back on my feet as soon as I can. Physically, I need to be able to keep up with my sons, who are good-natured for spectrum kids but who do best with set routines and physical activities. I'm also scheduled to teach in Spring 2015, and hope I can do rads at the same time.
RainDew -- sorry to hear you're back in the hospital. Hopefully, your fever will go down and you'll be able to go home soon.
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dancing diva, thanks for posting...
I do disagree about aluminum in deoderants...why not still to natural anyway!
Also, in the link you attached...I wanted to add info about 3 sugar substitutes that seem to be perfectly healthy (make sure non-GMO) and have a low glycemic index:
stevia
Xylitol
Erithytol
I don't like taste of stevia, but use xylitol and erithytol..
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Mags, my decision for reconstruction wasn't influenced by anyone. I started out with such huge breasts that I felt that going completely flat would be too much of a shock. Now I'm a "normal" size and I am COMPLETELY thrilled with it. Couldn't be happier. It's exactly what I've wanted pretty much my whole life (or still least since puberty).
I *am* somewhat offended by people's implications that somehow wanting to look a certain way or having your body image be a part of one's decision to have reconstruction is somehow shallow or less valid than being "practical", or that my decision was somehow influenced by a doctor trying to make money off me. I see so many people talking about how their decision was the right one and questioning people's motives for making a different decision, and it really bums me out. I made this decision before I even talked to anyone about it, as soon as I knew a BMX was in the cards. It kind of gives me the same feeling when some yahoo tells me that chemo us a scam and if I just ate organic or tried hemp oil or something I wouldn't need it, but obviously the medical-industrial complex has me brainwashed.
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JenKay, there aren't any brainwashed ladies on this site! I've learned more from here than I did from my surgeon, MO, or the chemo nurses. I like hearing about everyone's experiences, their decisions, and the different things people have tried for SEs. Thanks for sharing yours. BMX and reconstruction may be in my future, especially if I test positive for BRCA. If that is what is best for me, I'm reassured that many of you are happy with your decisions and have had good experiences.
But, I hear ya when it comes to others questioning one's decisions. There are a lot of *interesting* approaches to coping with autism, and people can be pretty judgmental when you choose your own path for your children.
It's DH's birthday, and I'm going to start putting one of his favorite dishes together. Might take me awhile, but he deserves it!
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Mum - thanks for the photo. Especially with chemo brain, it is so helpful.
Mags - thank you for your decision making process and yuck learning BC on your birthday. My dense breasts are one of the reasons I'm leaning towards the BMx, also, I respect everyone's personal decision. It is just that, personal, but knowing others thought process, and info from their medical friends and doctors gives each of us more info to go on when we make our personal choice. One of the reasons I so love this group.
Reconstruction - As I have little kids and am at the pool in a bathing suit with them and their little friends, there won't be questions (or at least so many). Also, I'm a curvy gal 38DDD and a size 16 bottom, and right now my breasts balance my bottom and saddle bags, if I was flat, I would be out of proportion. My mother (adopted) had BC when I was 10, they cut off her breast and she lived another 35 years, so I've been on the Mx bandwagon the whole time. I know as time went on, and reconstruction became an option, as it wasn't in 1974, she would say how she wished that had been possible. Also, my husband last night said he'd never played with implants and is looking forward to it. Although I realize I won't feel anything, I thought that was nice, as he hasn't talked about this much. You know, guys, don't talk to you, but don't be worried, he has seen a therapist to talk. As to if my PS is out for the money... he actually might be the only one on my team that I don't feel has an ulterior motive. No, I don't feel that way about my current MO either, but my BS and the RO both fall under the hospital's umbrella, and have to listen to the jerk MO who I switched away from, and cancer literature from NCCN or ASCO seems to push for lumpectomy + radiation. I respect all of your opinions, as by our communicating here, allows us more options, input and the abilty to think for ourselves using the valuavle input we all have.
Boxofrockstar - Yea, a good reason to be in the hospital. Post baby pictures, so much better than in the chair pictures.
RainDew - sorry you are in the hospital. Hopefully all better and home now.
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Yeah, Elaine, I wasn't meaning towards Mags specifically, I just meant people questioning those decisions in general. It's one thing to ask someone why they decided to take a certain route, it's another to judge them for their decisions or to suggest that they're wrong. I suspect folks think they're being helpful, but I've seen so many women bashing other women for being "shallow" for opting for reconstruction (not directly, more like "well, I don't understand why body image is soooo important to some people. It's stupid to make decision like that for the sake of vanity") or suggesting that their decisions came as result of doctors trying to influence them so they can make more money. It's disheartening and really sad when we should all be supporting each other, like we do here!
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the bottom line is everyone needs to do what they feel comfortable with doing and what will make them happy. I didn't have a masectomy. It was never even mentioned to me. I finally did ask my MO if I should have had a masectomy and she told me NO. However should nasty C reoccur I would do a uni masectomy. Would I reconstruct? I honestly don't know and hopefully I won't have to worry about it.
Hope you all are having a good weekend . It's ridiculously hot here about 100 degrees ugh
Nancy
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Hello July Team - I've missed you. I think the computer thing may be fixed again for awhile. Loved the cat-scan and dead mouse photos, Mags.
Rain - sorry to hear you are fevering again. I hope it is a quick visit.
I've mentioned before that I did reconstruction in 2012. Three thoughts on that. 1) I am glad I did. Even at my age. They will never droop again. 2) There is feeling in the skin over your "foobs" It is different, but there is still sensation. It isn't a dead zone. Give it time. 3) I am concerned about radiation with my reconstruction. My PS says there may be reconstruction of my reconstruction. Yuck.
Last Thursday was Chemo #5 and today is a down day already. I actually have taken the #2 nausea meds today, which I did not need to take on #3 or #4. My eyes ran constantly for 3 weeks last session, but quit yesterday. Go figure.
Also, the needle went into the port oddly on Thursday, and I have a big bruise and a red spot over my port. No swelling or soreness at this point, but I'm watching it. I called the MO's after hour number and left a message and did not hear back - which surprised me.
I'll try to keep up.
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Coyote - glad your computer feels well again. Would you mind sharing again why you are back in the chair (chemo brain, I can't remember)? My guess is a re-occurrence. How did they find it? That is a part that scares me with removal of the breasts, no more imaging. Also, how many nodes were positive in 2012? How many this time. Was radiation done in 2012? If so/not, how was that decision made? Also, are there more of us July sisters like you, repeat travelers?
Nancy - you had your lumpectomy on my 49th birthday. I'm glad you are happy with your decision, but when you say "I didn't have a mastectomy. It was never even mentioned to me." That is part of what is getting me right now. Why aren't all options laid out to us. I know in June, a BMx, wasn't offered, nor was a large lumpectomy, with reduction on the 'good' breast. Everyone, but BS was pushing for a lumpectomy and radiation, but BS said if I really felt the need for a Mx, she would do it. Also, was your tumor a different size when they took it out, or about the same as on the US or MRI?
Neoadjuvant ladies - we need to listen to those who have been there already, we have time to ask questions. Get your appointments ASAP so you have time for multiple appointments and maybe even second opinions with doctors at different hospitals (hence different tumor boards., so maybe different options)
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hi knmtwins - yes my tumor was originally diagnosed as 1.5 cm with no nodes involved. So I was doing lumpectomy and rads. Well the tumor was 2.8 cm and it made its way to 1 lymph node. That bought me a ticket to chemo. They got clean margins. Had they not gotten clean margins and had to go back in I would have done a uni masectomy. That's why I asked my MO if I should have had a masectomy. She said adamantly No and I trust her she's smart as a whip. LOL
Nancy
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Coyote, I had the same thing happen with my first taxol/herceptin infusion. The lab put the needle in crooked and when they took it out it bled and bled. Left a bruise with swelling but it eventually went down but I still have a little red spot where the needle went in. They told me it punctured a blood vessel. Luckily I had someone else this week and it went just fine. I hope yours feels better!
I'm looking forward to the exchange as I hate my TE' s. I have nerve pain in my armpit and around the incisions. They must be trying to regenerate. I think the implants will be a relief and it is encouraging to hear you have some feeling. So far mine are numb aside from the nerve pain. I have to wait until January, after chemo.
I hope everyone has a good night and feels better!
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Elaine - I too have learned more from ths website than from any information supplied by doctors/nurses. One of my recent learned tidbits-----I was interesred in brachtherapy instead of external beam rads. I asked about it at the very beginning and was put off because the onco said dont worry about that yet, you have to go through chemo first. Well, here I am post chemo and I went to my first rad onco appt and was told it's too late for brachytherapy, that should have been done within a week after surgery. I feel like I've been railroaded and that information was withheld from me. I hope all the newbies read everything on this site - what worked for us and what didn't.
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knmtwins - In July of 2012, I discovered a lump while showering. I knew immediately what it was. I went through the routine, GP, mamo, US, & biopsy. It was measured at slightly under 2 cm at that time. Triple negative. I started doing research about all of this - a lot of it right here on Breastcancer.org. I was fortunate that my GP sent me in a good direction to an excellent surgeon who talked to me about surgical options. Because of size and location, he did say that a lumpectomy would be a good choice. My MO did tell me that because the cancer was triple negative that chemo would be part of my treatment, but that the surgical choice was up to me to decide.As best as I can determine, it is up to each of us to do the research and decide what surgical treatment we want.
I decided on the BMX and had to state my case before the surgeon would agree. As it happened, I was not particularly healthy on several levels, so he would not do the surgery at one time. I had the right mastectomy and lymph removal with expander placement one week. (One sentinel node had cancerous cells.) The next week I had the prophylactic mastectomy of the left breast, tissue expander placed, PLUS my gallbladder removed. My treatment was to be chemo without radiation because of the mastectomy and no cancer beyond the sentinel node. I did not receive the 6th chemo treatment because of the extreme side effects. Survival was in question. I wish I had also pushed for radiation at that time.
My old MO used blood tests to decide if my cancer was in check. I have since been told that that doesn't work with breast cancer. This May (2014), one month after my appointment with my MO, I had a check up with my surgeon, who found the cancerous lymph nodes (3 together) by feel - I had an US and identified that the nodes were not good. We did not do a biopsy as the nodes looked intact and I suggested that we just go directly to surgery. I had a PET to check for further issues - none were found- only the 3 nodes popped - and went back to surgery. The three nodes were removed (with 5 more) and I went to my new MO, who told me that she recommended chemo and radiation this time. If I did not, I would be stage IV. If I did, they would consider it a recurrence and hold the staging at IIb. Hello, July Chemo Team. I asked my MO about future checks and she told me that we will do scans on a fairly regular basis if I am willing. Some people feel scans can cause cancer - personally, I'm willing.
I am not the only recurrent July Team member. I think there have been 4 or 5 of us posting here at various times.
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Blownaway - did you have a lumpectomy?
Internal Radiation Therapy - anyone have it done with a mastectomy?
It is a blessing and a curse to have this extra time to think about all this stuff...
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knmtwins - I am another repeat traveler. I had BC in 2005, at age 37. I had a lumpectomy. Lymph nodes were clean, but since the cancer was triple negative, I had chemo (AC) as well as radiation.
When I found a similar lump in the same breast this year, my oncologist considered it a new primary rather than a recurrence. I think it's mostly due to the fact that TN cancers would normally recur much earlier. This time around, due to the previous radiation of the breast, I needed a mastectomy, and decided on a bilateral one for symmetry and peace of mind. I am not planning to reconstruct. I am currently doing 6 rounds of TC, since they don't want to give anyone more than one treatment of Adriamycin.
I will also probably be having a prophylactic oophorectomy. Though my genetic testing came back negative, my MO is concerned that I may have a genetic component that they just can't test for yet, based on my personal and family history. Having recently seen my sister-in-law die from ovarian cancer, I am inclined to have the surgery to reduce that risk. Ovarian cancer is sneaky!
More than you probably needed to know, but maybe some of it is useful!
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knmtwins - I had a lumpectomy and also had 2 nodes removed from under arm which were clear. The path report came back stating that my margins were not wide enough so then I had a re excision. There were HER2+++cells in the margin so although I was only stage 1, I was told I would have to go through chemo. I asked if I had both breasts completely removed could I skip the chemo and was told no. From the very beginning, I was told that I had to have radiation. And after reading up I decided I wanted brachytherapy instead of external beam but I was told don't worry about rads right now, that is down the road. Fast forward, chemo is finished and its time for radiation and now Im being told that brachytherapy has to be done within a week after surgery so its no longer an option for me. BLOWNAWAY AGAIN!!!
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An older women recently approached me in the bathroom of a large grocery store. She asked if I was bald in support of a friend. I smiled and told her I had breast cancer. She then told me her story which included bmx over a decade or more ago with no reconstruction. She looked great in a beautiful silk blouse. I would have never known she was totally flat. She told me her late husband supported her and it felt great to never have to wear a bra. It was refreshing to meet and speak with a survivor who felt good about her decision to not reconstruct.I on the other hand will go through reconstruction and have my exchange surgery scheduled for 11/11. I cant wait!! When I was first diagnosed with BC and met with my BS, he laid out all my options including a BMX with reconstruction and implants if I wanted which would be covered by insurance. That's all I needed to hear and was able to make my decision within a matter of hours (of course after discussing with the DH). I asked my BS for a referral to a top PS so that I could get on top of this asap! My original breast served their purpose but weren't all that great. They were sagging (after three kids) and only looked full with push up bra's. Don't get me wrong, they fit my body but, I contemplated breast implants and a lift (yep, I'm not afraid to say that). I had my BMX with expanders back in June. I completed the fills of the expanders back in August and have been waiting for the end of Chemo so that I could schedule my exchange surgery. The process for me has been great!! I kept getting my expanders filled until I was a good and comfortable size (the size that looked the best too me in clothes). Imagine my surprise (smile) when the Nordstrom bra fitter asked me if I was full busted before my surgery ( I was not, but I am now!!!). I know the exchange to implants might look different (as mentioned in other bc.org threads) but, I don't mind and am keeping a positive attitude.
Breast cancer really sucks!! but, its given me an opportunity to make some changes and I'm going for it.
Good luck to all with whatever decision you decide.
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KiLin- Ovarian Cancer is bad. I'm clueless why with ER+ they don't offer oophorectomy. I watched a friend die from it, Ovarian Cancer scares the socks off me. I don't need them anymore, they are going to give me a drug to stop estrogen production in my body, so just take them so they can't turn cancerous... but NO... not the current recommendation. Mind you, I have not asked anyone about it either, so it isn't like anyone has specifically told me no. BTW - what doctor is the 'general' to all this cancer stuff? I started with my OB/GYN's office, I haven't even seen my PCP, maybe I'm missing a step here.
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knmtwins -
For me, since I'd already been through this once before, I already had a surgeon and an oncologist, who I was seeing periodically for checkups. So when I found the lump, I went directly to the surgeon. Now that surgery is over, my oncologist is in charge. He recommended the oophorectomy, which I had intended to ask about anyway. My PCP is getting updates from the other docs, but she isnt' really involved in any of it. Since my PCP had been doing my gyn exams, though, I will have to get a referral for the oophorectomy - I've asked the onc about that.
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knmtwins - When I was around 48-50 and having severe hotflashes, I wanted to take Premarin without the progesterone because the progesterone gave me fibroids and cramps. My gyno said since I had ovaries, straight estrogen could cause ovarian cancer. At that time, I opted to have a complete hysterectomy just to be on HRT. I've been taking Premarin all this time until my breast cancer diagnosis when I was told I had to stop. Also, I was told that the Premarin did not cause my cancer but now that I have cancer, the cancer "would feed on it". I am fairly certain that even though I have no ovaries or uterus, I will still be prescribed one of the hormone blocking drugs because your body makes small amounts of hormones even without those organs being present. I wish the onco would do a hormone test before prescribing just to ensure I really need the drug but at this point I've learned you're going to get whatever the docs and insurance company decides for you. By the way, is anyone else on BCBS insurance? If so, what is your out of pocket cost for Tamoxifen or Arimedex?
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Well last Thursday was supposed to be next to the last red devil, but neuropathy in ny feet made the onco decide not to do any more chemo right now.
So, I have new tumor growth, ny body can't handle the chemo right now...all of this scares the hell out of me!
Meeting with surgeon this week though ...there may be a silver lining... I'm trying to find it!
If they do surgery and no cancer cells are present I'll go straight to radiation (which with the new tumors is highly unlikely but a girl can dream right?)
Otherwise it's surgery, healing, then back to chemo...
I don't know how to feel about all this anymore so have been putting it out of my mind as much as possible
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Chaos, did you decide on mastectomy or not? they might get evrything out either way.
i was getting neuropathy too with AC. i started taking B100 Complex vitamins and icing the fingers. SOmebody had mentionned on this thread that their MO had said no Vit B during chemo. how come??
i have another question and am looking for advice and or your experiences. I have to apply for LTD and I don't think it will be accepted as I had the biopsy that discovered the cancer( even though cancer was not expected by docs) before i started working at my new job. i am basically screwed. which is kinda depressing me becasue i took 4 days off. SO question is, can u you apply for LTD for one thing like cancer, and then if declined, apply for something else like depression?
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my onco said no to vitamin B6. I don't know why - she's very conservative. She said I could take l- glutamine for neuropathy, but no vitamin B6
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Chaos, yes, maybe the surgeon will have some options for you. And, just because you can't tolerate AC right now doesn't mean that there aren't other possible options out there for you. A neighbor recently stopped by who couldn't tolerate chemo, but surgery, radiation and oral meds. seem to have done the trick -- cancer free now for five years!
None of us really knows what our prognosis is. Neoadjuvant chemo works for some, but for others, it just lets them know what doesn't work and that can be depressing.
Dancingdiva -- not sure how LTD works in Canada. In the US, you can apply for Social Security disability, SSI disability, or Family and Medical Leave (which is unpaid and only lasts about three months).
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