Chemo Starting September 2018
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M and m I also am having trouble sleeping. They gave me lorazepam for the nausea and anxiety but it is not working to put me to sleep now that I have started the chemo.
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Hi all, thank you for the comments re my smooshed face
I see all the comments re sleep. Me too! I have Ativan but know I cannot be on it for ever. I have been using the following a few nights with 1/2 Ativan (Ativan because of the steroids) and am going to try to go to just this or this with melatonin (which I am reading has antioxidant benefits too).
https://www.thenueco.com/collections/sets-and-rebuild/products/sleep-drops
I have had two great nights of sleep post chemo and am not groggy relatively. It is expensive but last a while. You can also get it on amazon.
Have a good day all!
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PS, I have posted before but definitely research THC and estrogen positive cancer if you are going down that route. I was all in to getting my card, but research convinced me otherwise. It is none of my business and I am just someone researching for myself. If you pM me i an give you sources to look. Hope it did help with nausea
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There are so many things it wouldn't have occurred to me to worry about prior to this cancer. One is that during my exchange surgery something happened (nerve damage/impingement) so that for the last 6 weeks I've had severe neuropathy in one foot. I woke up from surgery and said I couldn't feel my left foot and I was assured it was temporary. Since then my PCP thinks it's damage from the sharp edge of the tool they use when harvesting fat from my groin and my plastic surgeon thinks it's more localized at the tarsal tunnel of my foot. I had been told, unofficially, by my PCP that the hard knot I've always had above my ankle is a ganglion cyst but he's certain that's uninvolved, even though it's right where the pain starts. My PS thinks it could well be pressing on a nerve. At any rate, I was prescribed lyrica for the nerve pain by my PCP and he was setting up a referral to neurosurgery. Two days ago, my ankle started swelling and today the PCP set up an urgent venous ultrasound this morning, fearing DVT. Thankfully, there was no blood clot and I asked the US guy to look at the presumed ganglion cyst. He says it's pretty well calcified because it's been there so long. I saw my PS next and she had discussed my case with a podiatrist and has me set up on Tuesday to see her. And I have to go back this afternoon to followup with the PCP. What a stupid complication from breast surgery! But I can't walk or stand without pain and can't even stand to take a shower. Which means I'm now taking baths with my buzzed hair falling into the water around me. I'm a little worried about this podiatry appointment being set up on what was my worst day the first round, but I'm holding my breath and planning to medicate myself throughly to guard against bone pain and GI issues. Seem slike with any treatment in all this, there's some additional thing that needs treatment.
Okay, phew - had to get that rant of despair out there!
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I agree with Tigerlily that hormone positive cancer can't be treated (as far as tumor reduction goes) with cannabis and THC can be detrimental. That being said, you would have to smoke or eat a lot to reach those levels of thc-25g per day. The occasional gummy or puff off a joint to ease nausea I believe is still reasonably safe, and is no more potentially carcinogenic than alcohol is said to be for us hormone positive ladies, too.
I spend most of the time being positive about my future, but I think about my previous joie de vivre and I wonder how I will express that in the shadow of cancer. I feel like this has robbed me of my innocence, so to speak. And the kicker is that I knew and appreciated how beautiful my life was. Sorry for getting existential- I feel so normal this week - it's like I'm floating on a soap bubble.... and POP round 2 and no hair by Monday. Sigh
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Tigerlily and KK - I am only very weakly ER+, so I'm not sure if the research even applies to me. I see it as more a very occasional thing for SEs rather than an attempt to treat the cancer itself. The research I've seen on reputable websites (like the NIH) seems mixed but not uniformly negative by any stretch.
Also, KK - I sure know what you mean. I was a pretty happy person prior to getting pulled into the breast cancer vortex. I'm still a pretty happy person, overall, but life has changed irrevocably. I feel like I will forever walk in a different world than the one I'd been in. Round 2 for me tomorrow.
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Hi everyone, hope you're all hanging in there. Yesterday was super rough for me with nausea all day, but I have managed to keep eating and keep hydrated so taking that as a good sign. Hopefully it can't last forever. I also made it out to an event at my daughters' school for all of about 40 minutes in the evening, but that felt like quite an accomplishment!
Wanderweg - so sorry about the surgery complications! So many unexpected things we have to deal with. I am actually feeling really sore and feeling some swelling and hard lumps around my armpit incision starting yesterday and I'm not even sure who to call -- if I actually felt like dealing with another medical issue!
Piksie - thanks for checking in. How's the nerve pain going?
Fairchild - have you had any relief from your nausea?
SuefromSydney - sorry you have to be here, but welcome! It will be nice to have another board member on a southern hemisphere time schedule.
KK - I know just that feeling of knowing how wonderful your life is. In the months leading up to my diagnosis I had been thinking about how this was one of the happiest times of my life and looking to the future. I am still a positive person (and feel very lucky for that!) but it takes a beating in the face of all this.
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Hello ladies Got home about an hour and a half ago from my first round. It was scary, especially when the chemo nurse sat next to me with that giant tube of “red devil“. I think the hardest part of the chemo after that was the steroids. They made me feel very odd. I can compare it to is “tripping“ back in the day, that kind of speedy feeling that you can't wait until it's over. For the most part I'm doing good though staying hydrated eating saltines and Lorna Doones every now and then. I can't really focus that great, I found an old Sergio Leone Western and the slow pace in the wide open spaces are comforting. I might count myself lucky, but I know this party is just beginning.
Wanderweg- your surgery complications are heartbreaking. I know how it is to get different information from different doctors. You just want to know next steps. I'm sorry that this is such a bad patch for you.
KK and Beeline- i'm digging the esoteric thread. I too am feeling changed forever. I've never really been sick before, no surgeries, very happy, pragmatic and strong- been a nonprofit gal for 30 years. I love my life and I love making a difference, and now I feel broken, no longer sturdy, delicate, weak. It's been a hard trying to stay sharp and perceptive throughout this journey. It's ironic that we have to make so many important decisions while under this type of pressure. And part of me resents The consumerism that surrounds it. I never knew all that much about breast cancer, pretty much just broad strokes, now digging through all the information is quite daunting, particularly when many of the topics that come up in my feed our ads for breast cancer related products and services.
Good discussion on the pros and cons of THC. When I can focus a little take a look at some research as well.
Tigerlily I too am a fan of the melatonin. I typically take it several times a week. I use a different brand but I will check out your link.
So I'm starting to get this really funky taste in my mouth, so I'm going to get off the electronics and chew some gum as apparently I can't do these two things simultaneously. 🤪 at this point in time
Maybe I'll post again a little later if I have a sleepless night
Love and blue light all around
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Good evening all. My day 11 has been a good one. The only SE really bothering me is my mouth which feels as though it’s been treated with an angle grinder.
Today I’ve learned about another complication. Apparently my heart function is low normal and I have a ‘slightly ‘ leaking aortic valve. So much for my fit than average self image!! My heart function will be monitored so that any deterioration is identified quickly to avoid permanent damage. The anthracycline component of my current regime might have to be reduced or changed. I would be lying if I said the threat to my heart health is not seriously worrying.
Love and healing sleep to all.
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are there any ladies on here who uses Taxotere ans did suffer permanent hair loss??
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Hi Everyone: I am on Day 2 after first treatment of AC (Red Devil). I feel ok. Had my neulasta shot last night. So far so good. Woke up at 2 am feeling jittery (steroids) nauseated and headache. Took meds and went back to sleep. Here is my big question of the day. When does the quick and dirty menopause start? I am 51, just starting to have wonky periods and hotflashes. Dr said, " These meds will attack your ovaries like a sledgehammer" (quote), "so be prepared for the floodgates to open." Does anyone have an idea of when this might start?
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Hi Elizabeth, I got my period the night before my first chemo, joy. And then I got it again, slightly lighter, the night before my second chemo, exactly three weeks later. That was annoying. My MO said it was the chemo playing tricks. He said that could be it or I could get more. It's hard to know. I'm 45 so we'll see what happens. I have always had regular periods, so maybe it'll take a while since I'm a little younger and regular. No hot flashes or anything else.
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I’m interested in this too, as I’ve seen some start ovarian suppression right away while others wait until after chemo for the hormonal treatment portion of their treatment. I’m 40, with regular periods. I had my infusion on 9/10 and felt that I ovulated normally at the end of that week (normal CM, mittelschmerz, everything felt like it always does mid cycle). My first “chemo cycle” is due on 9/29. I feel like this is a huge key in fighting off recurrence, so I want to be aggressive, even though I’m sad to be chemically neutered at such a young age
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I’m 37 years old. My first infusion was on 8/10. I got a regular period for that cycle. However, my second infusion was 9/4 and I was technically supposed to get my period last Saturday and did not. I also had no cramps or symptoms of getting my period. So I guess my menopause has kicked in. I’m not too mad, however, because to have to deal with cramps and a period while trying to over come side effects from chemo is too much for me to ha
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SueFromSydney, so sorry to hear of the heart issues. I agree, that one is scary.
Oh, the joys of being a woman… At 38, I went on a high dose of Progestin to treat heavy menstruation and stopped menstruating until I was diagnosed with BC at 42. At that time, I stopped Progestin and moved to Tamoxifen. I became pretty regular on Tamoxifen with more typical symptoms of perimenopause. FFW to July at age 45, BC recurrence and moved to Arimidex and Zoladex but have discontinued both during chemo. Those wasted no time putting me into full menopause; the hot flashes are no joke! I'm not sure why I'm not taking them during chemo but pretty sure I'll resume after. I have no idea what my body would have done naturally, because I've been chemically controlled since 38.
Either chemo or the Arimidex/Zoladex concoction will ensure menopause continues; although, I may opt for an oophorectomy after chemo to forego the monthly shot in the belly.On the nerve pain front, I am pleasantly surprised at the progress I've made. I have not taken anything, nor have I guarded the painful areas. It's bothersome, but improving quickly. If/when I get back to running, I will likely wear a sleeve to start, but will make it a goal to eliminate it completely.
Today is head shaving day. I could probably wait a week as I have a lot of hair, but I'm anxious to put checks in boxes. And since I've opened the conversation with my boys, my little one talks about shaving my head every day.
All in all, feeling good today. I'm quasi working from home, but having trouble staying motivated. I'd much rather clean and nest, but not doing much of that, either. Chatting it up here and watching my kittens sleep, and not a bit of guilt!
Much love, ladies!
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Round two. I ate some lunch and then listened to music on my iPad. I was actually asleep when they switched from cytoxan to taxotere. After this the neulasta onpro and we can go home to wait for the side effects. I am rapidly closing in on bald, especially on the top of my head.
Love your cuddling kitties, piksie
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i wish I had the penguins! Unfortunately I was just awake during the port placement! Y'all are so delightful....please keep posting.
I got my "special meds" via my daughter's friends a couple of nights ago. It makes me nervous, because one has NO idea what's really in this substance! They brought a vaping pen and a cartredge of the relevant goods. I haven't used it yet, because my nausea finally went away about 12 days after the chemo, thank God. So I'm saving that stuff, as well as the patches of transdermal phenergan the doctor gave me. I plan to start them both a day or two before I have chemo on Thursday next week.
Here's some info on the MJ from my doctor. He said that it would probably control nausea best in the inhaled or "vaped" form, because it gets to the brain fastest. He also said there are many variations of MJ, but one with equal parts THC and CBD (I think that was it-- I don't know what this is) would probably work best. Of course, I don't have the ability to be that picky-- here, medical MJ is illegal, so I'm just trying to keep a low profile and use it only as a last resort.
At any rate, I'm relieved to know this severe nausea is apparently cyclical, lasting only about 11 days after chemo. On the downside, I discovered today that my hair is falling out (like REALLY-- what did I expect?????!). Somehow, though, it is still surprising! So I called my hairdresser and we made arrangements to quietly shave my head tomorrow. Oh, my!
So here's the question: What about wigs? Have you ordered one? From where? What about head coverings? Do you have an outlet for these things that you like? I frankly look like a little old lady in hats, so I need to do the cap thing or a wig. And I have a wedding to go to in October of a boy who is like a son to me! Oh, my! what to wear?!
Best wishes to all of you amazing women!0 -
Here's one of my kitties, Piper. She's a diva -- I am the only one allowed to touch her, and even then I have to ask first!
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And this is my beloved Dobby-cat, who can and will climb anything! Piksie, your kitties are lovely!
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Fairchild, I can’t speak for others, but I got my wiggrom a wig store in Houston where I live. I got it fitted and alternated after I shaved my head. Perhaps there is a wig store you can g to where you live?
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Those are some cute kitties you all are posting. Tomorrow when i hope to have energy i'm going to go find pics of my monsters.
This week has been less-than-delightful The newly placed port is sore, the incisions are sore, my back is sore, my lungs hurt, i'm tired as all get out and my left arm keeps going numb. My appetite? oh thats fine, eating like there is a famine expected.
Oh. and i'm breaking out. Because of course I am. AND i had been supposed to go see Paul Simon tonight and even got clearance from my MO to go, and did not feel well enough to do so. feh. Ok enough self pity.
Fairchild - I am ordering a wig from a place near me that specializes in medical hair loss. I bought a bunch of cheaper synthetics and I just don't love them. This I love. It eats up my discretionary budget for a while but I feel like me in it and i decided thats worth it.
I picked it out a month ago but going in to order it this week. Its my fringe benefit from all this.
Onward to tomorrow.
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pcranky, I'm so sorry about the port! Mine was really painful, too. I wondered why they would think it was ok to cut an inch in my chest and shove a device in without pain meds, when my lovely radiologist was so carefully numbing me up before doing just a biopsy. Humph. It seems to depend on whether males or females are doing the procedures! Fortunately, after about 2 weeks, my port has finally stopped hurting.
Also, my first chemo set off neurological pain in all of the wounds that had not quite healed. it was definitely NOT fun.
I finally ordered a wig from the place associated with the ACS tonight. Here's hoping I just halfway like it. I'm ordering a bunch of scarves and things, too, thinking I might like them better.
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I actually cold capped for my first 2 chemos in hopes to saving at least most of my hair. However, after seeing how much fall out I had after just the first chemo, I decided to order a prosthetic wig. I just couldn’t deal with the stress of trying to get better and having to deal with hair loss. I didn’t want the uncertainty of not knowing how well the cold cap will or will not work. After my second chemo A LOT more hair fell out. I am lucky, people can’t tell how thin my hair has gotten and I’m able to cover up the little bald spot I have on top, but I’m glad I opted to get the wig and notworry about cold capping. My third infusion is next Friday and I won’t have my wig till mid October so I’ll still have to cold cap for that infusion. I just hope I don’t lose too much More hair before the wig arrives. I honestly would’ve loved to still have all my own natural hair at the end of all the chemos, but managing hair and chemo side effects at the same time is too stressful
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I thought I'd add to the kitty collection: This is Hödr, the formerly feral cat who made our home hers.
Farichild - I had the opposite experience - my core biopsy hurt like hell, and so did the nuclear medicine injections. But I was completely out for my port placement and never felt a thing. I guess it all varies by provider, which is really unfortunate. I think they should minimize pain whenever possible.
pcranky - the port soreness shouldn't last. I can't even feel mine where the actual port is and just a tiny bit where it goes up my neck. I made myself a little crazy before my second infusion yesterday, worrying that maybe the port was broken, but it went fine and I hardly felt when the accessed it.
I decided not to get a wig. I'm wearing caps or scarves and kind of enjoying switching around. I've finally learned learned how to wrap the scarves so they stay put. I'm going back so rapidly on top now that I'm ready for it al just to fall out and be done with it. At home, I don't bother covering it.
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Good morning all,
My first infusion was the day before yesterday. It was really scary, but I didn’t experience as many as SEs as I had anticipated. I was sore and bloated and fought the nausea all day Yesterday, but I have been sleeping on and off which is a blessing. Had the Neulasta shot on board and went through that yesterday evening. My pressure dropped a little low but I had the naproxen and the Clairitin ready to go. I seem to be feeling relatively decent this morning. I choked down a little toast so I could take my medication and now I’m going to pick up my wig. I ordered it through a salon called chrysalis that specializes in wigs for cancer patients. It’s exorbitantly expensive, but I’ve always been so vain about my hair. I figured it was the one piece of myself I wasn’t willing to give to this disease. Everything about this is undignified- but we shall persevere. I don’t know it might be a giant waste of money but it is what it is. I also got some scarves And sleep caps so I don’t scare my boyfriend when he spends the night.
I’m dtgging all the pictures of the kitties. My boyfriend lent me his for the months that I was off of work recovering from my Mastectomy. She took good care of me. She took good care of me.
Hoping everyone has a good day today. Cheers
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hi m-
I am the same way, my hair is very important to me. Some may call it vain, but we are going through so much, that to be somewhat normal, I feel like having hair, even if it’s a wig is important. Let us know how your wig looks, and I hope you stay well and continue to not have side effects
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Day 12 and the shedding has started. Everywhere. 😳
We have an annual camping trip this weekend-a fun family getaway to celebrate my husbands birthday. I am so thankful and happy to be here and enjoying myself. Yesterday my hair wasn't going anywhere. Today is different. I have my cut scheduled for Monday after my 2nd fusion. I have been dreading this day for months now. I have a wig, a hat w hair and some caps. I've shed a few tears today. There is so much to submit to and accept with this diagnosis. This is such a heavy, outward display of what has been taken from us. Damn.
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KK, I can’t agree with you more. I am fearing the shedding. Because it’s really bring everything right in front of you. I’ve planned a haircut (shave) about 14 days after but may do it earlier after reading your message. I’m so sorry you are going through this while on a getaway. Hoping the getaway is a small distraction for you.
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Thanks Nisha- my wig is quite beautiful. Although it is still a wig. I’m sure I will adjust. I know it’s gonna take a long time if ever for my hair to get back to where it is now. But it does give a degree of normality. Was just thinking that today while I was making coffee, that I’ve got I have some normal days. Everything seems so challenging, so many first times.
KK my heart goes out for you. I too will mourn when my hair is cut and then falls out. But in the same breath earlier in the thread one of the ladies did say you can flip it to mean that the medication truly is working- i’m getting to all the cells in your body. Killing disease. It is cold comfort but comfort nonetheless.
I’m trying to remind myself of that every time I look in the mirror.
Still I will miss my hair
Right now I’d settle for a poop though- sorry yikes
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Elizabeth9, I was supposed to get my period the day after my 1st Taxol (Abraxane) and I only had extra cramps until it appeared a few days later. I started waking up at night feeling hot, but not to the point of sweating. I'm only 41 so I have no idea how hot flashes should feel... I'll see whether my next period will show up.
On sleep, I find that when I go for a run I sleep better at night. I was never a runner but this motivated me to exercise.
I'm part of a pilot study so I'm getting weekly Abraxane for a stage 2 IDC. Is anyone else doing weekly Abraxane?
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