Chemo Starting August 2019
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JRNJ my experience has been different. I met with my MO or a PA near the end of some cycles but not all. This may be because I was there in between with allergic reactions.
Hangry my eyebrows started growing back right after they fell out and my lashes are coming in too. I honestly think the new growth pushed out the old hairs, I hope yours start to regrow quickly as well!
FlowerKid nope, no sling. 6 nodes removed.
My last chemo was 12.17. Due to increased pins and needles my MO said no 6th cycle. She wants me to take a month off to regain my strength. Then I start the pill.
I am hoping to do the YMCA/Livestrong program for chemo patients. I think it will help me regain that strength. It may be offered in your area too. It's free.
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I didn't have a sling. I was told to immediately do everyday reaching to avoid frozen shoulder. I only had sentinel nodes removed. That could be the difference?
I don't think my recovery was bad. I was allowed full activity after 6 weeks.
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Flowerkid, A few people scared me too regarding surgery. I was in a lot of pain in the chest area for 3 to 4 weeks, which impacted sleep and I was on Vicadin. But arm movement was not that bad from the beginning and I could take care of myself. I let my husband feed the kids.
GoMama, thanks for the input.
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I'm readying myself for surgery on the 27th (single mastectomy and modified axillary dissection, with no reconstruction). I'm hearing mixed things about showering afterwards... for those of you who've already had surgery, when were you allowed to shower again?
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heart shaped box I think it was a week before I could shower. Once the gauze and tape came off I was free to shower. I found shampoo caps helped a lot, and my husband was nice enough to shampoo my hair in the sink once or twice that week.
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Hi Maraj, I am also a RN, also ER , but now preop and pacu. I didn't know much about Breast Cancer or the Treatment. I am tired of dr appts. I am supposed to have radiation. Very worried about being over treated. Hope you had a Merry Christmas!
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Heartshaped- I think I was told to remove the gauze after 2 days. I was allowed to shower after, but with no direct water contact. It had to hit higher up and run down.
I had tegaderm and gauze pads on my drains. I got one wet by mistake. I cut the gauze off and made new pads and covered with Tegaderm.
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@flowerkid I wore a sling for five weeks. My surgeon didn’t want it moved or used at all. This I think is because the incision under the arm from the node removal.
@autumngal24 I have six more radiation treatments and so far so good. Have a bit of a sore throat pain when swallowing food but they gave me something if it gets too bad. So far it’s bearable. Skin has held up well with. I’m using my Aloe plant each night as I found the Aquaphor too thick.
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folks with neuropathy: is anyone itchy? It's not listed as a typical symptom but no matter how much I moisturize, my legs and ankles are itchy. I am wondering if it's just me.
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GoMamma- I didn't have itchy legs and ankles, just cramping. For a short time I had an uncontrollable itch in my TEs.
Sorry that's not helpful!
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Heartshaped box - thinking of you and wishing you a smooth recovery.
Toadism - thanks for sharing about the sling
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Thanks Flowerkid! Done with surgery, I posted about my experience in the Dec surgery group. I highly recommend getting a "pregnancy pillow" for recovery (I don't have a recliner), it's been great for elevating and supporting me from all sides (I put a pillow beneath the top part, and another soft pillow lengthwise down the middle top part like a soft ramp), and the "legs" are great to prop my arm up on at night.
COMHO Full Body Pregnancy Pillow,... https://www.amazon.com/dp/B07Z1Q1Z4Y?ref=ppx_pop_mob_ap_share
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HeartShaped - I read your surgery experience. I am so sorry it has been rough but I am hoping these past few days are a little better for you. It is indeed a long haul! We can do this! I will also need the "binder" though I was told not open it till I return for post op appt 4 days later. Sucks about no opiods , things work differently where I am. I can't understand why they wouldn't give you what you need. I wonder if you can advocate for better pain medicine.
Thanks for the tip about the pillow
Wishing you some peace today.
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CT scan showed decreased size of lymph nodes and that the cancer has not spread. Amaziing news yet I still felt rather dejected - feeling like that should mean the surgery should now be less intense (hoping for fewer lymph node removal); but of course this is not the case.
Anyone have sensitivity in arm where lymph nodes removed? It hurt slightly when I do the hibeclens wash pre surgery. I am hoping that it is fine for surgery tomorrow.
Modified radical mastectomy tomorrow. Bundle of nerves. Going shopping for cheap shirts ; I will mostly borrow but thought it might be nice to have just a couple that I like and are comfy - such as flannel! And sweatpants since they are easy to pull on.
Sounds like I will have to wear compression bra till first post op. Appt which will be five days later. Therefore no shower till at least then..
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Hi FlowerKid, good news on your CT scan!
I had sentinel nodes removed on both arms and I had numbness and soreness for months. I'm over 7 months out and that is mostly resolved. Maybe a little soreness left, but no numbness.
Good luck tomorrow!!!
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Flowerkid, I'm sorry you didn't get the news you were hoping for! I was in exactly the same boat; my tumors all shrunk but it didn't change surgery for me (and unfortunately my pathology report showed residual disease). I too felt like my armpit and arm were tender the week before surgery, but I thought it might be my mind getting nervous about it (I was a mild wreck beforehand).
Sweatpants = yes! and get loose fitting v neck or scoop neck tees, I found them comfier than button up flannels (not as hot during hot flashes, and good for sleep). I've been able to sponge bathe pretty well despite the restrictions (losing my hair to chemo has actually worked out nicely in that regard!) so I don't miss showers as much as I feared. But my surgeon told me it was important to "use my arm normally for light tasks" so I could clean my "good" armpit etc (I can't remember if you were told to use a sling aftter?)
The armpit part really sucks the first week, I won't lie. But we got thru chemo, you can do this! Good luck tomorrow!
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I am one week post surgery. Tip of lanyard for drains in the shower was great!
So the labs came back indicating 6 of lymph nodes they removed have cancer cells. Not a tumor. And the breast tissue as well. Margins negative. So they want me to do radiation AND Kadcyla! More chemo. (I did chemo before surgery). I am Not handling this very well at all. Other option is radiation with herceptin and perjeta infusions (not chemo). Dr. Prefers TDM-1 (Kadcyla).
All goes along with ,5 years of hormone therapy which I had forgotten about, and also greatly upsets me.
This is so distressing and overwhelming for me - not sure I can handle chemo again! X 3 months...
Had anyone here done this?
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FlowerKid- I'm so sorry to hear about the chemo and radiation! There is nothing anyone can say to make this better. I'm hopeful that these plans will be what it takes to make you cancer free, so you can look back on this and see this as a particularly hard two years, but nothing that is too bad.
One step, one task at a time. That's how I think of it when things get tough. I try to focus on only getting through the next step.
The hormone therapy sucks. I'm expecting 10 years and I've started with some side effects. I have a ton of joint pain, hot flashes, sleep issues, and lady area issues. But you know what? My life is still good! I can do the sports and activities I like, I just groan a lot when I stand up from a seated position. It sucks, but it is better than the alternative. I hope that your SE's are merely annoying too!!
Thinking of you!!
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Flowerkid- I'm so sorry. I know exactly how bad that feels- I had residual positive nodes and cancer in my breast as well, and they want me on radiation and a YEAR of kadcyla next. I'm really upset about it, I feel like I barely made it thru all 6 neoadjuvant chemos without quitting early; TCHP was really hard on me and I'm balking at the idea of MORE chemo, esp one that regularly results in liver damage, and goes on for so damn long. 😫 Your MO only wants you to do 3 months?? I've read the standard treatment is 14 sessions every 3 weeks (10 months if there are no delays)
I'm still really nervous about radiation at this point, and still trying to recover from surgery and get this leaky drain out- it all feels like way too much and I'm feeling pretty depressed and upset about it as well. My MO knows how much I loathe chemo, and said I can stay on the Herceptin for now and he'll absolutely wait until I'm done with radiation and feeling like I can handle it. He also claims kadcyla "isn't that bad" 🙄 which is also what he said about TCHP! I hate that there's not very much anecdotal feedback of real-life side effects (which I trust WAY more than the pharmaceutical company's list, and that one looks bad enough). But, there IS a small "kadcyla for residual disease after neoadjuvant chemo" group here- muscle/joint/bone pain, neuropathy and fatigue seem to be the main reported symptoms, and liver function problems.
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(@ Flowerkid) my MO would also "accept" me staying on Herceptin rather than committing to Kadcyla, but said these are the stats: For HER2+ with residual disease, in pre-herceptin days the odds of recurrence were 50% in 3 yrs, with a year of Herceptin 23% risk of recurrence (& perjeta only adds 1% -2% reduction) and with a year of kadcyla only a 12% risk. (& he said unlike HER2 negative women who can have their cancer come back in 10 or 15 years, our biggest recurrence window is the first 3 years, and if we make it thru that we'll probably be ok)
At this point I'm considering TRYING the kadcyla, and if the side effects feel like too much to bear physically and mentally, I can always go back on just Herceptin and finish out my original treatment plan. It's just so disappointing to have this carrot of best-case-scenario dangled in front of you and then repeatedly ripped away (I was told at one point I might have pCR and potentially not even have to do radiation). Ugh.
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heart shape, thanks for that post! You explained the odds better than my MO ever has. I’ve read that we should all be getting Kadcyla but because it’s expensive, insurance will only approve it for higher risk cases.
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OnTarget- thank you. I probably got it wrong about length of time to be on Kadcyla which now of course I am even more worried. It just seems endless. Surreal.
Heartshaped- I so appreciate the stats. And I feel so similar to how you describe it all, esp. your last paragraph. this is my time to figure out what treatment I will go with . Also looking into "alternative" doctor so I learn how to put something healthy into my body simultaneously.not that I have money for it, but it seems important.
My MO also said one viable option would be herceptin and perjeta.
I feel lucky that TCHP was not so horrible for me, but that just somehow makes me more nervous about Kadcyla. I want to ask the MO the extent of neuropathy and as someone mentioned, wondering about icing for it. Maybe after the first dose of 90 minutes..?
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So I started AC Aug 29th, I have followed you all since. This is my go to, to see what side effects and issues everyone has or is having with there treatments. AC was very difficult for me and I was happy to finish that one! I started Taxol Nov 21 and just did my 8th infusion yesterday, had to skip last week with blood issues and other stuff. My question for you all is, weight gain during Taxol. I have gained 15 - 20 pounds since starting Taxol, and its making me crazy, anyone else having this issue or had this issue and if so what did you do to help stop maybe even lose some of it. The nurses, my doctor, my husband, friends, all say that its just the treatment and to not worry about it, and believe me I would love to not worry about it, but I lost 40 pds 2 years ago and I have worked hard to keep it off, I know that my diet hasn't been great and exercise is almost none existent. I am trying to improve my diet and eat better, but most food just taste ok but sweets I crave like crazy! And I am trying to get my exercise but some days are easier then others. I have other side effects and most I just work through, but this weight gain is very hard for me. Anyway just looking for people who understand what I'm going through and there experiences. Thank you for time! I do love hearing all your stories and I hope that you all are doing as well as can be expected!
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Hi Baffled,
I did TC, so I'm not very helpful. I did gain some weight (10lbs) during chemo, which I did not appreciate. My friend did AC+T recently and she gained a fair amount of weight while on Taxol. In her case, she was ok with the gain because she needs more fat to make her new boobs since she wants to do a DIEP flap procedure.
My nurse told me that most people gain weight on chemo. I know that I had some major sugar cravings during chemo. I was disappointed because I'd really cut sugar before then and the chemo made it come roaring back. I'm just now trying to make better decisions (exclude dessert, etc) so I can lose the 10 lbs I put on during chemo.
My plan is to reduce sweets to almost nothing, cut my food volume, and increase fish consumption. We'll see how it goes.
I'm really sorry that you have gained this weight, and I hope you can lose it right away when the chemo stops and you can increase your activity!
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I'm not an expert and not doing your treatment, but from what I heard it may be a lot of water retention and bloating, which may mean it will drop easily after treatment. My super skinny friend blew up and was all bloated, and is back to being super skinny.
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Baffled- I think the weight gain has more to do with the steroids/ chemo in general rather than any particular treatment. I've always been slim- I've weighed 110 lbs steady the past 20+ years, and during chemo I gained 15 lbs, and in a weird bloat-y way where my face and limbs and belly got very puffy. It's now been almost 2 months since my last steroid with chemo, and I still have the extra weight. I think it's just going to take time (& being active again- I've been very sedentary during treatment) to lose it.
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Baffled - I gained about 12 pounds on chemo, which for my tiny frame seemed a ton. I will say that most of it came off about 6 weeks after chemo was finished. Taxol or Taxotere causes fluid retention. My ankles would swell all the time, and then one day it magically went away and I lost like 4-5 lbs in 2 days. I still have 5 more to go. I'm working on adjusting my diet back to pre-cancer days. It's just tougher now because our bodies are put into chemopause and lack of estrogen makes it hard to lose weight. I work out every day and my clothes are back to fitting, so I know something is happening. It's just hard to see how slow it goes. You'll get there. Give yourself a little grace while still in treatment.
Heartshaped & Flowerkid - I'm so sorry to hear that you both have to do Kadcyla. I have heard the side effects are easier than TCHP.
OnTarget - Sorry to hear about your anti-hormonal side effects. I'm dreading those. I have until the end of radiation before I have to start as well.
I start radiation today. Full course of 6 weeks. Set up wasn't too bad. I'm more annoyed about all the driving I have to do to get there. It's 50 minutes of driving for a 15 minute procedure daily. Hopefully it goes quick and smoothly. I also need to make a final decision on which anti hormonal treatment to do. I have the option of Tamoxifen, or OS/AI. I am 38. Generally I would do Tamoxifen, but I have pretty severe endometriosis. I am just not sure how that would be affected by the TAmoxifen. It's been shown to thicken the endometrium which if it happens would mean a lot of pain for me. But OS/AI has it's own set of issues. I wish it wasn't so complex. I am looking at 5 years. We'll reasses after than, since my ER and PR numbers were pretty low.
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Autumn gal I meet with my RO next week, but I don't feel like I'm ready to start the process yet- I only JUST got my drain out and have very limited mobility in the side that had 8 nodes out, and a lot of pain still and I just feel like I need the tissue to be way more healed than this before abusing the area again. I'm REALLY lucky that it's only a 15 min drive for me, though!! Radiation was the part of treatment I was LEAST worried about, but now that it's coming up next (& I've been reading about potential damage), I'm working myself up into nervousness. I hope you post updates on your progress!
Are you planning to try tamoxifen first and just see how you do on it? None of the hormonal options sound good to me, ugh. I'm not plannjng to subject myself to anything until I'm done with other active treatments; esp if I go through with a whole year of Kadcyla as my MO wants, many say that the bone/joint/muscle pain it causes is amplified by tamoxifen. No thanks- one treatment at a time, for me. I'll take my chances.
In positive news, who else is seeing their hair grow back?! (Yay!) The first month after my last chemo I had thin, fine peach fuzz growing everywhere, but now at 2 months out I've got some pretty respectable coverage on my head (although it's coming in shockingly grey), i have to shave my legs again, and my almost-bald eyebrows look like actual eyebrows again!
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Met with my oncologist yesterday and because I had residual cancer after TCHP, she wants me to do Kadcyla for a year, instead of Herceptin for 7 months. I’m completely devastated because I was convinced I was done with all the hard stuff and just had to get strong. Of course it’s my choice and I have been doing the research, but it’s really a hard decision. MO said 88% were disease free after 3 years with Kadcyla and 77% with Herceptin. I don’t do well with drugs, so I am anticipating all possible SEs will be mine for the entire year
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Shelligirl I'm in the same position as you, DREADING going back on chemo at all after thinking I was done, much less for a whole extra year!!
I've been doing so well on just Herceptin, I hate the idea of going back to side effects again. I told my MO I would TRY the Kadcyla, and if it feels intolerable I can go back to Herceptin.0
