Starting Chemotherapy March 2018
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I'm sure somebody has a link or article that would be more informative, but my understanding from my onco team was that everybody who has a Lumpectomy has radiation because there could still be residual cells that broke away from the tumor sitting there waiting to act up again. I was also told that chemo will shrink my tumor, but likely will not eliminate my DCIS which is extensive so all of that crap has to go. Radiation plus Lumpectomy has a very close survival rate to Mastectomy.
My understanding is that if I have a mastectomy and margins and sentinel nodes are clear, I may not need radiation. I hope I don't, but since my tumor was so big I may need it anyway.
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Yes. I totally get it after surgery.... But even after chemo?? I had clear margins
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Pernickety - thank you for that info. I only had the discharge that one day, but I'm still going to talk with my MO about it.
Bec-Ky, I've had those crazy eating days too. I'll be on my way to work in the morning, and decide I need a donut. Yesterday, I pulled off the freeway looking for a donut shop, and when I didn't see one, I pulled over and googled donut shops in my area. Thankfully, this isn't a daily occurrance! I'm already overweight, so I don't need to gain any more. But I guess I've had enough of the days where I'm not eating enough, because I lost a few pounds at the beginning of chemo, and my weight has stayed steady since then - which is almost more unusual for me, as I tend to fluctuate by 3-5 pounds every time I weigh myself.
WCG and others who are finishing up with your chemo, congrats! I remember thinking after my first infusion that I had so far to go. Now I'm halfway through and will be getting #3 on Tuesday. Looking forward to that last one at the end of May. But I still have surgery and rads to go, so I'm still at the beginning of my journey.
My daughter works for the Cancer Support Center in AZ, and she said that they always remind their clients that after treatment, they will have a "new normal", because things will never be the same as they were before cancer, but that doesn't have to be a negative thing.
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Bec-Ky: I don't know the answer to your question, but according to my BS, they will most likely recommend radiation for me after my mastectomy and chemo because I had multicentric tumors. I was surprised because I'm getting a mastectomy so wtf are they going to radiate? But anyway, they recommend it because it improves disease free survival. That's it. It seems like surgery + chemo + radiation is a LOT of treatment, and no treatment is without risk so I definitely intend to question to decision to get radiation on my breast if that's what's recommended.
WCG - so jealous. I'm only through 2 of 6 over here.
Yang - thinking of you. I hope this infusion goes better for you and you can stay on track with the rest of your treatments.
Becca - you're doing better than me. I lost my s**t at infusion #2. Go back a few pages and you can read about me blowing my nose into my hands while crying in the middle of the desert, it was good times. Infusion #3 is next week, we'll see how that goes.
I have to say, I'm glad I'm getting chemo before surgery because I can feel the tumor shrinking and that helps with motivation, and believe me I need the help. I'm one of those hippy granola health nut people who doesn't even like to take tylenol - or at least I was before cancer. I hate the idea of all these treatments will all these side effects. Like, why can't I just drink some beet juice and chamomile or something and be better?
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Steph I think you chemo days is today. How are you doing last message you sent you were battling a cold. Wishing you good vibes.
I just got home from chemo, getting ready for R & R. Everything went as normal as it’s been during infusion..
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some how i am finding myself back on the board. I was Triple Negative in 2003 with a lumpectomy followed by A/C and T/T and radiation. Now almost 14 yeats later i was diagnosed with ER+ Her2-. Thought lumpectomy and small tumor with 3 lymphnodes would be good news but we are now hearing a recommendation of CMF for 6 months. Not at all what i wanted to hear. Waiting for Mamaprint and Oncotest results to confirm. My tumor was graded an 8,this time. The decision now is do i do weekly so i can i have a life or do i do it every 2 wks...thoughts?
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Beck-cky,
Same thoughts I have ,confusing also why this why that! Chemo and radiation and why some need 4 cycles and others is 6,how does chemo really works and how can you tell its working.
Becca953,
You're not alone this is battle we don't really know we are try to be positive but then again there are times we feel scared and afraid .. We just have to fight and Pray for the better we got this girls.
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Varnadt- your tumor grade was an 8? I thought it was 1, 2 or 3. 1 being slow growing, 2 intermediate growth speed, and 3-aggressive growth.
Is it a different type of measurement?
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urdrago—thanks for checking on me and hope your SEs are minimal this round. I’m due for round 3 next Thursday, not today. Yeah had a nasty cold but the sore throat is still lingering. I’ve had it for almost 2 weeks now! I called the dr Monday they said just keep doing the salt water gargle, Advil, numbing spray, etc. But since I don’t have a fever and overall feel ok I guess they weren’t too concerned. If I still have it tomorrow I’ll be calling again because it’s quite annoying and I don’t want to go into chemo having it.
Becky—I’m in the same boat re: needing radiation when this is done and not totally understanding why. But it seems like lumpectomies and radiation just go hand in hand no matter what.
Hope everyone else is doing well! Work has been crazy so I need to go back and catch up on the posts. I’m enjoying having my taste fully back even though it hurts when I swallow due to the darn sore throat. It’s always something!
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Bec-Ky, I was told the same as others with regards to lumpectomy. I have seen data with recent treatments that lumpectomies actually have multiple advantages over mastectomies. However, in certain cases such as widespread DCIS or larger tumors and smaller breasts they are virtually impossible.
In addition, most of the lymph nodes in the breast drain into the axillary nodes under the arm; however, some drain to the internal mammary nodes. These nodes are not removed because they are under the ribs. They can be positive and not show up on scans or MRIs due to micromets. So as treatment weary as I am, if they offered me radiation, I would take it. There is data that shows a proven benefit in breast cancer. I actually asked for it, and my doctor thought I was nuts. I asked because my tumor was on the inside nearer the sternum and back toward the chest wall.
Thanks for the support. It is great to have when facing such a beast. I just keep thinking that there has to be something better than chemo poison on the horizon. It is alarming to see the skull and crossbones on the meds and watch the nurses suit up like they are facing Ebola at the infusions, as if the cancer is not scary enough.
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Becca-it's not that I'm weary of taking radiation ... It's just that if I have chemo, doesn't that take care of all of it? No matter where?
I understand the idea and reason for radiation, but I guess I understand it more if there is NO chemo.
My question is if you DO chemo... Is it that "weak" that you need to do radiation as well?
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I don't think it's that chemo is weak, it's just that it's not a guarantee. After all, there are people who do full rounds of chemo & still recur.
On the other hand, we know that some people who do neoadjuvant chemo actually have their tumors completely disappear. So I think the problem is we don't know how our tumor cells might have reacted - would ours be the kind that all disappears or would ours be the kind that still sticks around?
I think of adjuvant chemo as trying to kill cells of cancer that might have escaped into the body. We don't know if they're there but just in case, we're going after them.
With rads, we KNOW there were cancer cells there in that area, and while we're hoping that the surgeon got them all, and that chemo got any that might have been missed, we just can't be certain so you get an extra few % points of risk reduction of recurrence by doing rads.Your RO should be able to give you an estimate of how much your risk of recurrence goes down by doing radiation.
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Thanks moth...
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Hi ladies!
First, Yang, glad you can start your next treatment. Good luck! Becca, hang in there - the midpoint makes you very weary - I describe it as like being in an endless waiting room. To all who are having upcoming treatments - keep the finish line in sight - it does (eventually) get there!
Thanks to all for the good wishes! Yesterday's final TC infusion went pretty well - no real SEs yet but the steroids seem to keep those in check for a few days after. I will keep everyone updated on how the course went - so far it's still predictable as to the main timeline.
So as for my first radiation meeting with the RO - I am going to have the works 6 1/2 weeks - regular rads to breast (over the implant, hoping that holds up), chest wall and then the lymph areas under the arm and up to the left collarbone area. And then I will have "the boost." For me, when the RO told me the odds of recurrence decreasing from about 30% to less than 10%, it was a done deal - can't argue with those numbers. I had two 4.5 cm tumors in the lower quadrant and near the skin so the margins were close, and I had one sentinel lymph node with about 50 isolated cells and one 1 mm micro. So my understanding, as others have already echoed here, is that chemo goes everywhere - it goes after the things you can't see that may have traveled through the lymph system or the bloodstream. And hopefully it has done just that. Then the radiation is targeted, and a back-up, on what may be left in the skin/tissue and lymph areas, again that may not be detectable but could be present. i am not looking forward to it - I am very fair skinned and already been assured I will burn (not a maybe, it's pretty much a fact). But again, to get down to a less than 10% recurrence chance is big, and then in my mind at least the hormone therapy after helps make that even less. When I asked about the plan for rads, the RO told me "you're young, I need to make sure we treat you to the fullest." So I did love hearing he thought I was young - LOL! - at 55 I'm a lot older than many of our sisters on this thread. Same from the MO when we had a preliminary hormone discussion - I will start about 6 weeks after rads end, and will be on an extended course (very strong PR/ER receptors). She said the same thing - at my age the longer course makes sense and just keeps improving the odds.
All these decisions are very personal, I know. For me, getting through a single treatment period and starting up with the hormones will my time to define my own "new normal." As for the rads burns, already keeping Amazon busy with all the recommended creams and such. But this weekend is my "ick" one for TC, so the rest will have to wait.
Best to all on a Friday! Hugs.
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WC--just my $0.02 on helping your skin through rads. I know there are all kinds of weird wonderful creams on BCO, some of which I got, but I really believe in the end it doesn't matter so much *what* you put on as that you do it regularly. Late in my tx I just grabbed whatever was closest--Aquaphor, Eucerin, Desitin, . . . , slathered a bunch of it on, put on that loose, stained bra, and went on about my day.
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Hi all, I have been reading from time to time but not posting much. I had my first dose of Taxol (after 4 AC at two-week intervals) but when I went for the second, my liver enzymes were too high and they said basically "come back next week." Not sure how I feel about that!
When I add that to the neuropathy I've felt in my hands and feet after just 1 dose of Taxol, I really have no idea how many of my 12 scheduled Taxol treatments I'm going to get through.
I've definitely felt like this whole process had become overwhelming, from a mental/emotional standpoint - but that does fade and then a few days later I feel like I can take on what I need to. Hang in there, just keep putting one foot in front of the other!
I'm also starting to wonder if I really have to get radiation! It's been great reading through everyone's posts because these are exactly the issues I'm thinking about as well.
-paisley
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Hi Warriors,
I had a couple of good weeks and was in countdown mode with 8 chemo infusions down, 4 to go. Then I got slammed with a sudden, rapidly increasing fever and spent 3 days in the hospital. They ran many tests and still no clear answers. Lots of IV antibiotics and fluids and the fever broke. It was scary to get so bad so fast: 99 to almost 103 in less than 2 hours. I'm glad I've been carrying a thermometer in my purse since the start of chemo. Also good to remember not to take Tylenol since it can mask the fever and then you don't know how much trouble you may be in. Stay well y'all
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I’ve posted this in a couple of the other “month” threads. Has anyone changed their tx date? I will be starting on Wednesdays but am wondering if that is like the worst day if I’m trying to feel good for the weekends? I feel like Monday or Friday would be better. I mentioned tweaking the schedule back in my patient education session and she said they really don’t like to do that. I’m wondering if I should try to shift my regular tx day to Fridays
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Hi ladies - Ingerp, thanks for the insight on frequency of application - I'm definitely a skin care person so I will take that advice and apply constantly! If I follow what I would do for a regular sunburn, makes perfect sense!
Now Day 5 from TC infusion - the schedule and SE's have remained very predictable - Infusion on Thursday, felt good on Friday, and then Saturday afternoon started to get weary (steroids wearing off), and had the Icky day yesterday - my Day 4. A little more manageable, probably because we learn what to expect. Have to say, a little less rashiness this time so far on hands/face. Tongue still white and taste and texture shot again. Slept a lot Saturday afternoon into yesterday - not much energy. Feeling a little better today but still no taste or real desire to eat. Had quite a bit of finger numbness/tingling on Saturday afternoon/evening - my husband gave me a little hard placemat to "tap" the fingertips. It seemed to help - maybe just psychologically, but hey, that counts too.
Wishing all a good start to the week!
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Hi Ingerp, I am Monday's and just had a weekend from hell after my first infusion of docetaxel (04/31). Previously had 3 rounds of FEC (three weeks apart) with no real drama. Side effects quite manageable. Last Thursday headaches degenerated into all over body pain that was intolerable. No temp or fever. 2 trips to ER and was admitted to oncology ward today. Apparently it's a reaction to the chemo, plus urinary infection (paracetamol masking temp maybe as down doggie mentioned), impacted bowel (sluggish bowel at best so increasing pain relief making that worse) and possibly blood clot in chemo arm (no port for 6 infusions but will get PICC for next 2). Not sure that loading your days will rule in a good weekend. Plus I agree they like to keep the spread as eve as possible (every 14 or 21 days) so only move if they must.
Paisleypie, I am hearing you. During the last few days I had said if this is what the next 2 (yes only 2) are going to be like, I don't think I can do it. Thankfully oncologist told me today they will preempt this and bring me into hospital day 3 and prevent the reaction at the get go. I note they gave me a bag of dexamethazone (steroid) front up today and that seemed to help a lot. Plus lots of saline to hydrate and flush.
In the hospital in my town (Albury NSW Australia) they have removed all the ice boots and mittens that were used to prevent the peripheral neuropathy, so I requested ice which they put in a bag in a towel in a pillow case on both feet and hands. Realise the drugs and regimes are different (place to place), not to mention how we all react can be different also.
I am having Neo adjuvant chemo, then surgery then radiation. After FEC I have had a minor reduction in the size of the primary tumour no change to second tumour or node. Anything but growth is a win so I will take that. Surgery will be a mastectomy because I had DCIS and lumpectomy before on this breast. I thought I may have been able to skip rads because I have had that before too but didnt think it through. They will irradiate the axillia and the nodes around the clavicle. Radiation is mop up. Best possible chance of eliminating a reoccurrence, they recommend do it.
My thoughts swing between, this is gonna get me and I don't want to spend the rest of my time in treatment......to.....you have to do everything you possibly can, survival is just around the corner. Every day is another day done, one day closer to the end of treatment.
Hang in everyone and may your side effects be minimal.
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Aiyiyi helenlouise--what an ordeal!! Hoping things improve for you soon. :-(
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Hi everyone! Getting ready for round 3on Wednesday. I will be so happy to say only one more after this one. I hope everyone is doing as well as possible considering all we are going through these days. It will get better! Are any of you having a dry scalp problem? I pretty much shaved my head at start of treatment then again when i started seeing bald spots. I’ve noticed patches of weird scaly areas. Any suggestions what to use?
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Ingerp - I do treatment on Mondays. It depends on how your oncology center runs. I like to do the labs a day ahead of time nearer to my house, because the wait at the infusion center lab department can take hours delaying the chemo start. So I get labs on Fridays. This poses two problems. One is the Dr. has to release the labs Sunday night or Monday morning which can be a challenge. The other problem is that my numbers are sometimes wonky in that my body has only had 4 days to recover from the chemo so it is still affecting me and my liver. I have had a lab or two drawn Monday before chemo and the numbers looked better. If I had it to do over I might choose a better day like Tuesday or Wednesday.
Some ladies on other topics here mentioned feeling bad on days 4&5 after the chemo, so that is what I expected. The reality was chemo day is really the day I am wiped out after the infusion. I have had a few rough days 1&2 following chemo, but days 3 through 6 have been fine. I guess everyone is different so it is difficult to estimate.
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NV Dobie - I had the same issue with a bad rash about the same time after my 2nd TC treatment and am having a similar issue with an allergic rash after 3rd TC treatment. The itching was ridiculously annoying and anywhere I scratched either hives or bumps would appear instantly. Last time, my MO said it was not related to Chemo so I went to my primary who had me take a steroid 2x a day, zyrtec 1x day and pepcid every 4 hours. It worked. Hope you feel better soon!
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Ingerp, much better today! I think the trick is to get on to it as soon as you don't feel right.
Quiltinnut, I use an Aveda sensitive oil which can be used all over. Many swear by Argan oil.
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Whoops—I typed a response that disappeared. Dang phones! Anyway—thanks to Becca and Helenlouise. My labs will be right before infusion—it’s all 15 minutes from my house. I still haven’t heard if they can change my tx day from Wed to Fri and I’m on planes all day today. Heading to Montana to my youngest’s college graduation. It’s going to be such an emotional weekend for me. My family hasn’t been together since last summer and I don’t know when that will happen again. And then there’s the whole coming home and starting tx thing. .
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Morning, ladies. Quilting nut, I used Argan oil on my scalp since the beginning, and it has kept it pretty soft and in good shape. Just get a pure one - can get it at most any drugstore chain. I also have heard some people say coconut oil is also good. When you start it's a little weird (oiling your scalp) but it actually feels pretty nice, and I just have massaged the oil in. You must be excited about that 3/4 mark - I know I was!
Ingerp, good luck with the travel! Take lots of sanitizer and take care of yourself!
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Hi ladies...getting ready for round 3 of 4 on Thursday. I'm surprised by how fast the time is going by even though I'm spending a lot of it feeling crappy. My sore throat FINALLY went away on its own after having it for over 2 weeks. I guess it's just a sign my immune system isn't the same during chemo.
Quiltingnut—my scalp was flaky as well but I started using coconut oil and it's fine now. I too have heard good things about the Argan oil, but I already had coconut oil at home. I have about a half inch of hair on my head..a few thinner patches here and there, but I'm surprised the rest of it is staying put. Anybody know when I can expect the rest to fall out? I know the eyebrows and eyelashes can take awhile but I thought I'd be a lot balder on my head by now (not that I'm complaining). Not sure if I should shave it completely or leave as is.
I do have a weird SE and it has to be from the chemo as it started shortly after round 1 and has increased. Never had it before chemo. The eyelid on my left eye keeps twitching and it is extremely annoying!!! Some days it's worse than others and it tends to come in spurts. Right now it's been going on for the past hour! I try to massage my eyelid but it doesn't really help. Has anyone else ever heard of this as a chemo SE??
Oh and my period never showed up this month, so I guess I'm in chemopause now (though that is not a SE I'm complaining about!)
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Steph - I'm expecting my period by may 14th if I were to get it. I doubt I will... and I would expect not to. My last one lasted forever like almost 2 weeks... But the last week was just discolored discharge mainly.... Sorry TMI 🤣
I have chemo #3 tomorrow.... Can't wait for it to be over! I can't wait to say.... "I only have 1 left!"
I feel the best on the last week before chemo... So it's so sad to know the next week is going to suck... And mothers day is Sunday... My day 5....one of my worst days in the cycle! Boo!
Hope everyone is doing good. I've gained almost 10 pounds I eat like a cow.
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Bec-Ky- Chemo didn’t mess up your taste buds?
My taste buds are shot. Food & Drinks taste terrible!
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