Chemo starting October 2017
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Hooray Jennifer!! Congratulations on your last chemo! 👏 Good luck with your surgery
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Jenn, woo hooooooooo!!! I'm so happy for you. I love your smile! I tell you, despite being warned that I'd have an emotional letdown after finishing up with chemo, I didn't feel it. I was thrilled to be done with it and don't miss it in the least. 3 more weeks til your surgery and you can start putting all this madness behind you. I'm pulling for you.
Agatha, no radiation for me because I had a mastectomy, the tumor was relatively small, and there was never any evidence of cancer in my nodes, chest wall or skin. To be honest, I kind of wanted it because there are studies that say radiation provides some protection against TN recurrence, but who knows how current or valid that data is. I'll speak about it more with my NP on 3/28 but I'm sure she'll look at me like I have two heads.
Drove my BIL to radiation today and then to the speech pathologist who is teaching him to swallow differently for when the radiation starts impacting his throat. He broke down in front of her. She was so sweet and came out and had a long conversation with me. I feel so badly for him. His wife battled brain cancer and was so brave throughout her treatments. I keep telling him that people would kill to have his prognosis (90% chance of beating it), and he just has another 5 1/2 weeks to go. He's just having such a hard time. Cancer really sucks.
Tomorrow, I get my first acupuncture treatment in hopes of helping this neuropathy in my feet. I'm going to get on the recumbent bike in a bit instead of walking today to see if I can determine if the impact of walking is helping or hurting.
I know we have several ladies still in the middle of radiation treatments, but the October 2017 group is getting there, aren't we?
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The rosy cheeks I noticed about an hour before chemo. I thought oh no I have a fever and can't get my last chemo today. I took my temp at home a few times and it was 97.something. Yesterday at my office visit it was 99.something and medical assistant was concerned. But it read 97.something today. I haven't had a fever since my first round of AC.
I asked my the NP if my oncologist was ok with my port being removed and she ran it by him and told me today, yes my port can come out the BMX. One less procedure I have to worry about.
Lisa I will post about my RO appt next Tuesday. I have been wanting a consult all along. My MO kept saying, he doesn't think I need rads but I want to hear it from my RO.
One of my biggest frustrations with treatment has been the coordination of care between MO, RO, BS, and PS. I wonder, do they even talk to each other about my case. I really have to stay on top and push for answers.
Lisa, I understand too about kinda wanting rads. With TN, you want to take all available treatment..rads, Xeloda. I have even read about metformin, a diabetes drug. My glucose has had some higher than normal readings around 135 (110 and under is suppose to be normal). Not every week but more and more in the last few months. I am going to ask for a A1C test at my 6 week check up with MO. Whatever we can do to keep this beast away!
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Hi Jen, re the glucose readings. Mine often ran higher than normal, but I wasn't required to fast ahead of time and I usually ate breakfast before I went to chemo. I think non-fasting norm can be as high as 180. Nonetheless, it's good to keep on top of these things. And that's a good reminder that I need to get sugar out of the house again. I'm an addict when it comes to sugar and it was much easier when it wasn't there to eat.
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Congratulations Jennifer on finishing chemo!!. Hope all the ladies are doing well. I'm still struggling with fatigue, the awful D, bone pain, body pain and just overall feel bad. My hair is at least growing...My eyebrows and eyelashes are back.. Thank God. Maybe in a few weeks I'll go in public without my hats........ Come on warm weather. Hang in there everyone there is light at the end of this long tunnel......
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Yay Jennifer!! I love the "Ring the bell and run like hell." That is awesome!
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Lisa and Jennifer - Sugar and starches are my kryptonite. I allowed myself the treats while I was on chemo since I felt so cruddy and wasn't up to depriving myself. But now that chemo and surgery are over I'm going to step up.
The best thing I can do to ward off a reoccurrence is to lose weight. That's up to me. I wish it were another pill or high-tech treatment but it's not. My longterm prospects are reliant on my will power and discipline, both of which have never been the strongest. I am determined to shift my mindset - hopefully it will be easier since the stakes are so high now.
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2brandy - you look great!! I finished chemo two and a half weeks ago and also have body pain and fatigue. Almost feel worse then when getting treatments. I start rads on Monday and heard that also causes fatigue. Oh well we will get through this!
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Hi All,
I have been following you all everyday and so happy to see the progress this October group has made.
I feel like I have fallen a bit behind because of the long wait between my end of chemo on Feb 19 and my surgery which is scheduled for Mar 29.
I am getting scared and anxious and have some random questions.
I will be having a DMx with placement of tissue expanders (will have to have radiation and after that will decide if I'm going with diep flap or implants)
I've had my pre-op physical and an echo.
1. I have to have an echocardiogram every 90 days because I'm on Herceptin which can be hard on your heart. The procedure is moderately uncomfortable but seems like it will be torture with tissue expanders. Anyone have experience with this?
2. I'm wondering what I should get for a chest undergarment for post surgery.
3. I have read suggestions that I should get my post op medications ahead of time. I live alone so will be going from the hospital to my Sister's home who lives in another town - nowhere near my current pharmacy. Would you suggest I go to my BS or PS for these meds?
4. I have been working full time since my DX but will apply for short term disability for surgery. Anyone with experience as to how long disability is for this procedure?
I know these may sound like simple answers I should be able to figure out myself. But I am not on my A-game in the brain department. Anxiety, pre-occupation, fear and residual chemo-brain have robbed me of my clarity.
This thread has already helped me immensely.
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Simbobby I just met with BS and PS this week, preparing for surgery.
The BS gave me a prescription for 2 post surgery cami's. I made a appt at medical supply store for next week. She also gave me a prescription for Emend (anti nausea pill) to take 4 hours pre-surgery. Not sure if I will need the cami's. The PS says I will come home with bandages and dressings. Surgery is on Tuesday and I will have an appt in his office on the following Friday for a dressing change.
My PS pre-op appt was yesterday and got 5 different pill prescriptions for after surgery. Two are to prevent infections, One for muscle spasms, One for Nausea and OxyCodone for pain. My understanding is I will also come home with a pain ball/pain pump. They haven't quite explained that to me.
Since I am planning on getting expanders, the PS is the main person for my pre-op and aftercare. He says he intends to put 300-400 cc's in the expanders, so I will come home with a "B" cup chest.
And I totally get the chemo-brain. I am terriable. I read back these posts or emails and see typo's or I don't make sense.
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oh Jennifer, you just made me laugh, thank you! So I can blame all my rambling old posts on my chemo brain?? Thank you so much, I needed that!
I was about to answer Simbobby: even though my experience has been almost the total opposite clear from that very start to now, every step of the way. I can't really be of much help except I just wanted to let you know that I read your post this morning and want to offer my emotional support...I don't have much else to give. It sounds like you've got a lot on your plate but are heading to the finish line.
Please keep in touch! And keep asking questions, there's a lot of experience and very kind ladies here. It's been a big help to me, even though I haven't been much help myself. Good luck, big hugs to you!!
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Hi Simbobby
I'm also triple+. Last chemo 2/12. Right mastectomy with immediate TRAM FLAP 3/15. It's probably different USA and Singapore, also different surgery. Nonetheless, here is my experience:
1) Can't answer cos I had immediate reconstruction. I also need echo or MUGA every 90days. Pre-op, I went thru echo, chest x-ray and ECG.
2) Both undergarments bought at PS clinic. Bra no wire and front hooks.
3) I did not have any pre-op meds. My post-op meds were given when I discharged from hospital 3/19.
4) I was given 44days leave for this surgery.
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Ladies, I am very frustrated. I am 2 months post chemo and I finished 20 RADS on Monday. Over the past 3 weeks I have had terrible joint pain that is increasingly getting worse....My hands are so swollen that I cannot even hold my toothbrush, my hips hurt so bad I can't sleep or sit at my desk, I can't pull my shirt off because my shoulders hurt so bad when I raise my arms. My hands and arms are going numb frequently (feels like they are falling asleep). I saw my onlologist this morning and he said he doesn't think the joint pain is from the chemo or rads and that it should get better over the next few months. He said take tylenol and exercise. Well, tylenol doesn't touch the pain, and I already exercise. The pain goes away while I am exercising...the swelling does not. And the minute I stop exercising, the joint pain is back within minutes. I have another followup appointment in 2 months with him and he said if I am still having issues, we would discuss.
I will be starting Tamoxifen today as well, so I am worried about the added SEs. Does anyone have any recommendations of maybe supplements or things that have worked for you if you have this same issue? I refuse to believe that this is NOT related to the chemo....never had these issues before!
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Dear Littlebee -
I am so sorry you are in so much pain. If Tylenol isn't working maybe ask your doctor if you can try Advil/Motrin/Aleve.
Did you have the pins and needles feeling before you started rads? It sounds similar to the neuropathy I've had in my hands and feet since I started Taxol. I'm 6 weeks out from my last Taxol and the tingling and swollen hand feeling are still there. I'm seeing my MO tomorrow and am going to discuss my lingering neuropathy. I'll let you know what she suggests (she doesn't want me to take a Vitamin B supplement like a lot of people do for neuropathy.)
Re: the pain in your hips and shoulders do you think it's possible that the position that you have to hold for radiation may be throwing something out of whack? I haven't started rads yet so I don't have any experience with that yet.
Good luck on starting Tamoxifen.
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Little bee, I'm so sorry! And I'm probably the wrong person to be asking cuz I drive all the drs nuts, asking questions until I get the answer I want. I think I have a reputation for being a big PITA when it comes to treatment. I also think waiting this out for two months is totally unacceptable. And I wonder too if perhaps this is a back issue??? Any thoughts about seeing a chiropractor? Especially when you're about to start another round of chemo. I know, I know, everyone's different, but the neuropathy I have is what stopped my chemo altogether. That and the overly swollen ankles.
And now, with only two rads left, I'm blistered so badly I'm ready to quit that too.
Ugh!! And Agatha, any idea why no vitamin B? The B complex is the very thing my MO said I SHOULD be taking!! One Taxol early November when we quit it and I'm still dropping things. Putting on makeup is such an ordeal, I cannot pick up and hold even an eyebrow pencil 😡 Yep, very shallow view of things but still...
This is all so wild, from one practice and their protocols to another... UGH!! Can I get kicked off here for using the F word???0 -
Tewks - A LOT of doctors suggest Vitamin B and people swear by it. However, my oncologist believes that many supplements also strengthen cancer cells, or support the microenvironment that allow them to flourish. Cancer cells are still cells of our body so if you take something to boost your body on a cellular level you are also benefiting the cancer cells at the same time. It also depends on the vitamin. For instance, I'm allowed to take Vitamin D but not B.
My aromatherapist friend had a very similar explanation for why she wouldn't treat me (or anyone) while I had cancer. She believes that aromatherapy works to strengthen or enforce the body as a whole, and that would mean enforcing the parts of the body that are actively hurting us (tumor/cancer cells).
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wow, that makes a LOT of sense!! I have this last ditch effort consult with a RO tonight so I'm going to ask their opinion...see if I get yet another one.
thanks for the answer. And the aromatherapy...that's a totally new idea for me too. So much to learn.0 -
Simbobby - My SIL had DMX with expanders 3.5 weeks ago. She was taped up and even had a fancy machine that was providing a vacuum like effect for her skin for the first week. Then the PS gave her a mastectomy bra with a divider in it to prevent "uniboob" and help define where the expanders were. She ended up not needing to buy anything special for now. I would find out if you can get the hospital to fill any post surgery meds. That would likely be the easiest because you don't know what will occur during surgery. But I would look into this and ask if there are any insurance issues or anything. I would call the hospital, but your surgeon will be the point person probably on this. I had the echocardiogram at the start of my AC/T treatments. I don't remember it being really uncomfortable, but I didn't have expanders in. It was just more sensors put on me and sitting still in the "tube" on my back. I don't have any experience with disability. Sorry!!
littlebee - Two things - #1 - I agree there is much of this that sounds like neuropathy. Have you asked your MO about seeing an OT/PT? Insurance is covering my visits to one for the cording in my arm and my neuropathy. #2 - I seem to remember a post very, very similar to this from a different month of chemo...to the point that I double checked the date on your post as I was reading it. Maybe search around a bit and see if you come up with something similar. I'm sorry I can't be more helpful with that!
Hands and feet are bad today. I wonder if it's because I didn't take my B complex at night the last two days. Who knows. Agatha - so interesting the different approaches doctors have! I think my boob is starting to hurt a bit from rads. Don't know if I'm imagining that or not. It's nice out today, so I should go do something outside, but I am tired and sore. I did walk on the treadmill this morning for a bit, so at least there's that!
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AgathaNYC - I had some tingling in my fingertips with Taxol, but this is different...this is my whole arm going numb like I have a pinched nerve. And the strange thing is, I felt completely fine, actually GREAT, after chemo. All of this has just started within the last 3 weeks (2 months PFC). I don't think my position during RADS is the culprit...this is an all-over-stiffness/achiness/swollen. it is like all my joints are affected. I am going to try some Aleve to see if that makes any difference.
Tewks - I was actually thinking about seeing a chiropractor! And was considering starting on Vitamin D as well. I am so sorry you are blistering so badly on RADS. How many treatments have you had/do you have left?
petey111 - our cancer center actually has a fitness center and patients (before during or after treatment) get a 6 month membership with a personal trainer for free. I am going to give that a try as my MO suggested that stretching may help, although I have my doubts.
You ladies are all so wonderful for sharing all of your experiences. It has truly helped to talk about all of this!
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2brandy, looking good! I've been going hatless around family but still haven't gotten the courage to do so in public. It's getting there, though.
LittleBee, I'd get a new MO. No way should you be expected to just live with debilitating pain for another 2 months. It's terrible, but you have to be your own advocate, and a big part of that is letting go of doctors who aren't listening to you.
Simbobby, it's normal to be anxious before surgery. Try to visualize that this is a good thing, the final step in eradicating the cancer. I know some women have Farewell parties to their boobs, but I coped by not thinking about it too much.
Tewks, if anyone is entitled to use the f-bomb, it's us.
Re medications: the PS and BS need to coordinate as to who the lead doctor is, as he is who will prescribe your medication and PT and/or release you from the hospital. In my case it was the PS who was the lead doctor. I definitely agree that you should get your meds filled prior to surgery if you won't be near your pharmacy.
Re undergarments: I ordered a cami and a second front-closing sports bra, as the surgeon gave me one before surgery, plus I woke up in a surgical bra that I wore until my first shower. I didn't really need the cami, though you might find it useful for light support once you ditch the compression garments. Most surgeons say to avoid underwire for at least 8 weeks, so don't rely on those if you have them. Lately I've been rotating between my sports bra and surgical bra during the day and going bra-less at night. Oh, and I also bought a bunch of front-buttoning shirts that I didn't really need either, because I've mastered taking off loose fitting shirts by taking one arm out of the sleeve and then looping it over my head.
The only things I really needed for surgery were: phone, phone charger, lip balm, a few facial wipes, moisturizing cream, toothpaste and toothbrush, fresh underwear, safety pins and/or fanny pack for drains. If you wear a loose outfit the morning of the surgery, you can just change into that outfit when you go home. I slept most of the time, so didn't need puzzle books or ipad. I had to laugh at the 300-item list that was suggested on this site. I was in the hospital for 33 hours, not a month.
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So, I went for acupuncture on Wednesday. Can't say it helped my neuropathy, but my sciatica issue seems to be better. Not sure if it was due to my stretches or the acupuncture, but hoping it's gone for good! Neuropathy in my feet and restless legs continue to plague me. It comes on strong when I finally sit down for the evening, around 8pm. Last night, I went to an off-Broadway production of Chicago (the musical), and I made the mistake of wearing cute boots. Like clockwork, at 8pm, here comes the restless legs and pins-and-needles in my feet. I couldn't take off my shoes to rub my feet and it was maddening to sit still! I really hope it gets better soon because it is the only SE that is still really concerning me.
Other SEs: My mangled nails are growing out and have about 1/4 inch to go before they are back to normal. My hair is growing sloooooowly but surely and I hope to go hatless in a month. My nose isn't running like a sieve, but it does run a lot more than it should. Hoping that will resolve when my nose hairs return. Not sure what's taking them so damn long. My eyes are still dry, but they seem to be getting better every day as I'm not using artificial tears as often. My eyelashes are coming back in. Woot. I'm still waiting for my eyebrows. And the really long peach fuzz on my face seems to have fallen out. Still waiting for it to fall out around my chin. Oh, and my husband and I are going to our lakehouse for the weekend, and are going to test to see if normal sex is possible after all this. TMI?
I went to PT on Wednesday, too. While it was too early to start pushing anything since I'm only 3 weeks from surgery, she gave me a gentle massage around the new breasts and upper arm. At first I was a little embarrassed, but I got over it. It helped because I'm finally able to sleep on my side. Halleluiah!
Have a great weekend, ladies.
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Lisa...wow! Even tho it's not all great news your post sounds so positive and uplifting. You come through as having a very upbeat outlook and that's so nice to read...thank you! Several years ago, long before this whole ordeal began, both my husband and I had restless legs, nighttime leg and foot cramps and the toe tingling of neuropathy. And our family Dr suggested OTC magnesium supplements along with drinking more water. I don't know if this might help you but for us it worked like a charm. I still have the neuropathy, some days better than others, but the restless legs and cramps are gone gone gone. I also gave in to several suggestions and bought Birkenstocks. I never thought I'd ever wear them...not ever, but I have to admit they've helped the tingly toes tremendously and are worth every penny of the ridiculously high price. And they're not as terribly ugly as they were when I was in college. Zappos is good cuz you can try them and return them easily if you don't like them.
Hang in there! Sounds like you're doing so well, I'm happy for you!0 -
littlebee72 - I finished Chemo 12/21/17. I had absolutely no neuropathy. Right after I finished chemo I had horrible muscle and joint pain. Some days it would just be my right shoulder blade, but other days it would be my hips, knees my jaw! It Some areas would swell. My right back was so bad I was convinced it was bone mets. It got much better after I finished rads on 2/27, but I still have pain in my left shoulder now.
I am convinced this is due to the chemo after exhaustive research. My MO has agreed.
I would suggest getting your thyroid checked - mine was way out of whack due to the chemo and this can cause pain.
I hope you feel better.
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littlebee - I hope you find something that helps!!
Lisa - You totally sound like you are making progress. I'll be honest, I'm a little jealous. I'd love it if I didn't feel anything until 8 p.m. or if I had eyelashes coming in. I'm feeling impatient! LOL
I feel like it's one step forward two back for me. My hands were feeling better, now they're not. My boob is starting to get sore from rads.... Oh well. At least I'm not actually on the chemo drugs anymore. I'll get there I know. I'm just ready for it all to go away!
SIL had appts today. I'm anxious to hear what she has to say. Was anyone ever told they couldn't use normal deodorant anymore because they had nodes removed? My SIL said the lymphedema specialist put that on her discharge orders. She was supposed to look for spray or roll on. I asked if she was sure that was a long term direction and not just until she was healed. She was going to ask today when she saw the specialist. I just that that was a new one I hadn't heard before!
Hope everyone is feeling a bit better!
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Hi, Petey! I'm right with you with the hands and feet. My toes feel so f'ing weird. I hope we both get relief from this soon. My oncologist suggested I learn and practice Tai Chi. The integrative medicine department at my hospital has a program - I have to check into it. She said it will really help with the balance in my hands and feet that's a little off.
I also told her about my blurry eyesight. She suggested that I wait until my lashes come back in before I try to get a new Rx for lenses. I didn't know lashes effected vision but it makes sense. Also, that 3+/- month period of time allows the effects of the chemo to wear off.
I have one major milestone to report! :-) This week is the first time since surgery that I've finally been able to sleep on my side without any discomfort. Can't tell you how great that is.
Seeing the RO tomorrow to get the details on my radiology plan. At our initial consult she told me that if I had clean nodes it would be 5x weekly for 3 weeks, + 4 boosts, in the prone position.
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Petey, sure, I'm getting eyelashes but my eyebrows are still MIA!
I was told not to use deodorant until the lymph node incision had healed, but that was when I was planning on getting a lumpectomy. Since I switched to mastectomy, the doctor said I could wear deodorant because she removed them internally, so there was no incision in my armpit.
Agatha, I can relate. I love that I can sleep on my side now, even though I think it resulted in my side being very tender. I think my muscles and tendons are trying to adjust to everything just like I am!
I'm seeing my MO on Wednesday to discuss survival after cancer. I'm going to ask once again when I can get my port out. I'm also going to ask if I can get a PET scan. I guess some doctors believe in them and others don't. Mine don't but I don't care. I want it for my peace of mind.
Had a great weekend at the lake. Had a great time with friends, and my husband said that it was good to see my laughing again. Only downside is that I ate like a horse. Tomorrow, back to veggies and lean protein!
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Hi friends. Only 5 radiation treatments left. Grateful that I’m nearing the end. Did a weekend retreat on survivorship which was amazing. Lots of focus on healing, self care and mindfulness. Tamox is going ok. One pill at a time. Looking forward to getting back to exercise once my burned armpit feels better 😜
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Hi Joy, I’m so happy for you! This week is the end for me too, I have only three more. How’s your skin doing?
Hang in there everyone!0 -
Agatha - I should look into Tai Chi. I've always been sort of interested in it. I hope you don't get more radiation added on! That would be great for you. I never thought about lashes and vision too. I think I'm starting to get teeny tiny roots of lashes, but I'm not 100% sure yet. :-) I'm excited you can sleep on your side. I was able to sleep on my side several weeks after my lumpectomy, though not as comfortably as I once did. Now that I'm getting into radiation, I'm actually starting to be a tad sore on that side again. :-( Oh well, this too shall pass right?
Lisa - I think the deodorant thing my SIL said was weird. I'm sure it just meant until she healed from surgery. Sometimes, the amount of information coming at them is overwhelming. I'm glad you are laughing and eating again. :-)
Sara - I'm glad to hear you are doing well and almost done with radiation!! Anything interesting to report with tamoxifen? There are several retreats around here. I might look into one.
Tewks - So close!!!! I'm excited for you.
I am on 6/33 for radiation. The crease area and where my breast meets my chest is starting to be irritated. I started using pure aloe after treatments. Maybe that will help a little.
I don't know about you gals, but since I have started to feel better, I've started missing my hair a whole lot more. I hate wearing the wigs, but feel like such a cancer patient when I don't.
Oh! And I did try these temporary tattoo eyebrows. They lasted all week last week and could have lasted longer, but they were kind of starting to bug me a tiny bit, so I took them off. The trick though was finding the right shape/fullness and the right color. The first ones I bought were too straight, too thin, and too red. The next ones have worked ok, but the are a tad too dark. If I had bought them from Headcovers.com, I could have bought the right color, but I ordered them from Amazon and got the color I *thought* would work. LOL If you are missing eyebrows, but don't want expensive human hair ones or to get microblading or whatever, these are worth the $5 I think. https://www.headcovers.com/eyebrows/eyebrow-tattoo...
I need to go walk on the treadmill. It's rainy and cold and all I want to do is curl up with a book, but I will be good and walk. :-) Have a good week!
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Hi Petey, yes, I agree about the hair...and nails too! I think I said the other day that I'm focusing more on my appearance and feel rather "shallow," considering what everyone else is going through. My hair, such as it STILL isn't, is coming in silver and very very curly. And it's not even one of the classy "good" silvers hahaha! And how am I ever going to wear all my beloved sandals come spring?? My toes look like something out of The Hobbit...
I can't believe I'm contemplating the purchase of another wig.
And Petey, as you get further into rads, you might try Aquaphor. Load it on, as often as you need it. And if you get to the crispy stage like I am be sure to ask for prescription Silvadene. It's helped the most, relieving both the sting and occasional itch. I also have oxycodone which I took for a whole day and a half but my kids scared me so badly about it that I stopped. They don't know pain, thank goodness!
Hang in there everyone, spring and better days are actually on the way!
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