Chemo Starting August 2019
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hi HangryMama, I'm also coping with CIPN in my feet more so than my hands, but my dexterity is definitely not what it was. Mostly I have numb feet. Has yours been progressing?
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Hey GoMama, it has really progressed over the last month or so. I had pain more so than numbness at first. It felt like I got my fingers slammed in a door. My toes are starting to feel more numb. The oncologist lowered my dose on the last two treatments and I have two more to go. I am also taking two doses of Gabapentin a day. It seems to be helping. Where are you with your taxol treatments? My surgery is tentative for the end of January having a double mastectomy then followed by radiation. Hope you CIPN improves and prneither of us have permanent damage.
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On Target and Toadism, thank you for sharing about surgery. I am very anxious about it. Nervous about actual surgery, nervous bout the concept of a mastectomy and nervous bout recovery both short and long term.
If people can share what items they bought that were helpful after surgery, that would be great. I am obsessed - do I need camisoles, button down dresses, shirts, pillows...and I am hoping to have the things I need, but not spend too much money.
Heartshaped - it seems we are really on such a similar path! I am to have surgery in a few weeks and we will see from the result of the lab if I need radiation. I of course I am hoping for none! Scarily, my tumor was quite big, we do know it is shrinking though.
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Re: nose hair and lack thereof and nose bleed, dry nose - I am miserable yet I wanted to share that nasal rinsing does indeed help!!
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Hi FlowerKid- here are the things I liked having:
Pouches at my waist for drains. I ended up hating my expensive mastectomy camisoles. The pouch pockets are high and made me look fat. I had no prob walking around in public with my drain pouches.
Pouch around neck for showering.
I wore button downs at first, but quickly moved into soft, stretchy T-shirts. Much preferred.
I had a wedge for sleeping in bed and sitting on the couch. The propping up can be achieved with regular pillows too.
We got a lift chair from a family member and I really liked it bc my abs hurt a lot and you can't use your arms to get up.
Easy open lids on medications.
Mastectomy pillow for car rides. This makes me feel safer.
I bought 4 little travel pillows from Walmart I think. $4 each, and SO useful for propping me up!
That is about it for me. I didn't really need much.
Free items that were helpful:
DH did laundry constantly so my soft Ts were clean. Same with bedding, towels, wash cloths.
Friends took me for walks, or to lunch.
Fingers crossed that you don't need radiation!!
I was just talking to my DH about the year in review. Technically it was the worst year if my life, but actually it wasn't that bad at all. I really enjoyed my Mastectomy Summer. I took walks, sat outside, and really relaxed. It is the first time since high school that I had such a long time off work, and it was nice. It would have been more fun if I could have done very active things, but just resetting and healing was extremely pleasant.
I look at 2019 as something I had to get through, but the bad parts are quickly receding and I've a lot to look forward to in 2020. Hopefully that includes being mindful and proactive in maximizing the life I have ahead of me!
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Flowerkid we really are! Our diagnosis and timing thereof must have been very similar! I agree with the nasal rinsing 100%, and the other things that have helped me hugely are setting up a humidifier in my room at night, and applying petroleum jelly (or alternative) inside my nostrils with a q-tip (the bleeding stopped, if not the dripping!)
Thanks OnTarget for the tips!
HangryMama- I found large doses of pure glutamine powder to be hugely helpful in keeping CIPN at bay (10g 3x daily during the week of chemo), so much so that when I forgot doses I would have the symptoms flare up the next day (so I knew it was working!) There are many articles and clinical trials about the effectiveness of glutamine in preventing CIPN and my oncologist was impressed with my results using it.
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Thank you OnTarget for the info. Very helpful! And I appreciate and do understand how you look at your year. I get it, I have been trying to find the silver linings if at all possible - and one is simply reconnecting with family members who I truly love.
Till the next time..thanks all for being here
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Flowerkid I second the buttoned shirts for the beginning and loose comfy Ts once moving is easier. My surgeon wanted the drains low, so gravity would help keep it flowing, so I bought a waitress apron on Amazon for the drains. I clipped them to a cheap lanyard to shower. My surgery was late June, so I wore long wrap skirts a lot (from darngoodyarn.com), they were easy and comfy. The hospital sent us home with a few disposable waterproof pads, which was nice because I was afraid the bulbs would leak. I did have one tube separate from a bulb during the day and leak on my clothes, so I bought some washable waterproof bed pads just in case.
HangryMama I also take Gabapentin, 2x at night. My MO suggested alpha lipoic acid, 200 mg 2x a day with meals. in addition to the numbness I get occasional shooting pains in my fingers and toes.
I thought I'd updated my profile. I had Taxotere for 2 cycles then after allergic reactions she switched me to Abraxane and Cytoxan. After 2 cycles we figured out I was allergic to the Cytoxan, so I'm just getting Abraxane now.
So as a result of my switch to Abraxane, and despite the recent loss of all my eyelashes and 95% of my brows, my hair is growing!! I didn't quite believe it but my family confirmed I have peach fuzz. It's white, which my son insists is on trend.
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As I have already shared, I finished my last round of chemo (two weeks ago).
But -
Tonight I have red, puffy watery eyes. Has anyone ever had this? Could be unrelated (though everything is related!!) But it makes me nervous.
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Heartshaped Box - you mentioned puffy red eyes. I know you have been through bigger things but that is my current worry so I have to ask if there was a solution.
Anyone else too - red swollen eyes? Worrying me a little.
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Hey!
My eyes have been getting like that at times, I think it's due to no eye lashes. Eyelashes seen to play a more important role than I realized.
Is anyone experiencing foot/ankle & lower back/hip pain ? Somedays I'm okay, but others by the end of the night I'm in so much pain. I'm usually very active & always doing yoga so this is so weird for me.
Also my hot flashes suck SO bad. Is anyone taking any meds for hot flashes yet ?
I also tried to get an appointment with my doc to talk about side effects but I feel like I'm overreacting.
I havent started my tamoxifen yet either I'm to scared.
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I think in2earth is right about eyelashes. My eyes are always red. Also, I was seeing flashes of light and was told the steroids caused it and my oncologist said watery eyes were actually dry eyes and your body over compensating. Haven’t had my vision checked yet, but expecting my prescription will need to be increased.
Has anyone else experienced itching and rash on their chest after mastectomy? Any tips?
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in2earth- my hot flashes were pretty bad, but I think my body is getting used to them. I was on Zoladex prior to chemo, then off it for chemo, then back on after, and now Femara added.
My doc did prescribe Gabapentin for them, but after trying once and not better I decided to skip them.
Other things that help:
Ativan (2 pills)
Nyquil- I was on this for a week lately and slept great. I need to test this more.
On the leg/ankle pain- I just had exhausted muscles, cramps, the feeling of shin splints, and the feeling that my legs and ankles are swollen. It has mostly resolved post chemo.
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Shelligirl I had redness, rash, and itching everywhere the orange Betadine or whatever they used was smeared on my skin. I tried Benadryl but it never works for me. I ended up going to Urgent Care and getting steroids. It was the only thing that helped.
I was never allergic to anything before that, other than postnasal drip from pollen. Now I've had allergic reactions to several things. Make sure your doctor notes the reaction in your chart, you don't want them using the same stuff on you if you need another procedure.
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Flowerkid my eyes have been irritated, blurry, twitchy, red, dry yet teary, and gritty feeling nonstop since I started chemo, but a few weeks ago they turned even worse with really puffy painful red eyelids and lots of crust in the morning. I was told it was a mild case of blepharitis (which is basically a kind of tear duct or eyelid infection), and given erythromycin ointment that improved it pretty quickly. I use saline rimses when they feel scratchy, and artificial tears daily for the "regular" chemo-induced eye irritation, hoping it goes away now that I'm down to just Herceptin.
In2earth my hot flashes are pretty annoying too! Are you afraid they'll get even worse on tamoxifen? (Or just the other array of potential nasty side effects? 😖) The couple days I kept track I was getting about a dozen in a 24 hr period. I'm trying not to think about them being a reality for potentially years of my life... ugh. I find ways to manage them; I
dress/ keep the thermostat so that I'm always just a little colder than I'd prefer, which helps reduce the frequency and severity for me. I wear easy layers i can strip down in a hurry. I've heard that acupuncture is really effective (and I normally like acupuncture), but I haven't tried it yet- I think I've been avoiding more needles in my life lately. I didn't realize there were non-hormonal drugs that could help? Has anyone had meaningful relief with any? Not that I want any more drugs in my life either...I have trouble sleeping each night due to aching pain in my hips and legs that Advil doesn't help, but in desperation tried an otc homeopathic called "leg cramp pm" which had been working surprisingly well and helps me sleep (I typically don't have much faith in homeopathics). I got a massage yesterday and she said I had some edema swelling in my legs that's probably contributing, but is it from the steroids? From the chemo still working out of my system? From the anemia; the exhausted muscle pain and subsequent bedrest I took a lot of the past couple months? Who knows. The drs just say "yep, being on chemo can cause that" every time I sheepishly mention a new symptom, so I stopped complaining about new aches and pains.
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Hi August group. I started 12/2. How often do you meet with MO after treatment starts? They told me 4 to 6 weeks. I had to discuss changing iv meds with my nurse after first treatment as she was hooking me up for second treatment. So she went and discussed it with PA. Is this normal or is there a scheduled evaluation time between treatments.
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JRNJ I meet with my oncologist the morning before EVERY infusion, and he goes over my lab work to assess fitness for chemo and to address any other concerns. In my case this means every 3 weeks.But I had a friend (stage 4) who would typically see a physician assistant rather than her MO, but still, this was before EVERY chemo infusion.
One time a chemo nurse decided to make a small change in dosing on my chemo (since I had gained 15 lbs), and she had to check in with my MO about it even though I'd just come from his office. It took hours! But this is not common, not in my experience.
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I'm finally done with Chemo. My last date was 12/5 so I'm slowly recovering. Everyone is so excited for me, and while it feels good to put it behind me, it doesn't feel done. I still feel like crap. Can't taste anything, have swollen legs, ankles and basically everything, eyes water constantly. I will say the aches and pains have subsided for the most part. And I didn't lose eyelashes or eye brows. Even my hair started growing back toward the end. Yay for positives
I start my Herceptin only infusion the day after Christmas. But they made it seem like it would be a breeze. I did develop lymphedema even with only 3 nodes removed, which is highly frustrating. I just had my PT Evaluation, which took me a month to get into, and the swelling got worse in that time. So now I have to wear a compression sleeve daily, and possibly for 6 months. Add this to my list of craptastic side effects of breast cancer.
How many of you are going on to radiation? I have my set up on January 17th. Wondering how soon after I will start radiation. I have to do the full 6 week course. I've been told add more yoga into my fitness routine to help keep the scar tissue malleable before and during radiation. I bought a MakeMerry bra because I'm just not sure I can go braless even though they suggest that.
in2earth - for the hot flashes, I mostly just dress in layers constantly. It's winter here which helps because I can just pop outdoors if I need to cool down. Mine mostly come in the evening and night hours. I keep our room quite cool at night. I tried the peppermint oil, but that didn't do anything for me. My doctor prescribed me Ativan for the short term which does seem to help the frequency of flashes overnight. I have a closet full of sweaters but can't really wear any of them because I always overheat.
JRNJ - I meed with my MO every infusion. Blood Work, MO Appointment, Infusion every time. I met with a PA once when my MO was out, and she also was able to make necessary changes.
HeartShapedBox - They told me that it would take 6-8 weeks for my body to realize it was done with chemo and then the swelling should go down. I'm not sure when you finished, but it could still be a little bit.
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JRNJ- my MO or nurse practitioner met with me before each chemo to check on me. A nurse from the chemo unit also called the day before chemo to ask mostly the same questions.
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heartshaped box, thanks so much for the info on the rash. I’m sure you are right because the rash is confined to my chest only. Makes sense I’m reacting to something applied during surgery. Thanks!!!
Sorry about your hot flashes. For me, if I can find away to cool down fast, as I feel one coming on, I can often times avoid it. Getting my feet cool works the best. Tile floors, ice packs and the pool are my go-to devises. The worst is while I’m sleeping and don’t wake up in time and then I’m so miserable and covered in sweat that it’s hard to get back to sleep.
Autumnga124, I was also told Herceptin is a nonevent. Fingers crossed that’s true. My last chemo was 12/6 and I still have that awful taste in my mouth and anemia but I’m not sick anymore. At least we are done with that awful poison and even if we aren’t feeling great today, we know we will feel better soon.
Has anyone gotten there pathology report back after their mastectomy? I’m looking for a good resource to learn how to interpret the results.
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Thanks for the input. I had a feeling that is what others would say. I can't believe this keeps happening to me. I thought I liked this Dr. until I got handed off to the pushy overworked nurse. I should have switched to Sloan. So stressful making all these decisions.
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Autumngal the "post chemo 'meh' has been the experience of MANY of us! But it DOES get better, slowly. I had my first Herceptin-only infusion last Tues, and it is WORLDS better, way way easier. I did have some mild nausea, but otherwise I don't feel any different than I did the week before the Herceptin- yay! My taste buds are almost back to normal, and my eyes are watering much less too- it gets better! It's just slow, so it's hard to feel excited about it, especially with a still-long road of treatment ahead. I'm getting radiation too, seems to be standard for lymph involvement; did you have any positive nodes or is this just preventative? That SUCKS that you're dealing with lymphedema! How long after surgery did it develop?
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Shelligirl, just make sure you don't have Red Breast Syndrome. It doesn't sound like it, but I'd check with your PS to be on the safe side.
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Hello all, thank you all for the input, and hoping this post finds everyone having a good day.
I am set to have my last chemo on Monday seems like a pretty good Christmas present in light of things. Very happy treatments weren't delayed due to CIPN. Should be scheduling double mastectomy for end of January with radiation to follow. So any more tips on what to bring or buy to prepare for the procedure and recovery is appreciated. Then I will need to get ovaries out ASAP because of the BRCA1 mutation. Still on the fence about reconstruction the other procedures are more pressing just praying the chemo did it's job. It certainly has done a job on my body. Oh my gosh @flowerkid yes missing my nose hairs something fierce (had my nostrils caurterized and it helped ) and especially my tastebuds such a foodie so this has been rough. So used to running circles around everyone and then you can't. Hopefully once chemo ends anemia will improve and neuropathy will go away. Ready to get outside more and be active or just go anywhere besides the doctors or the grocery store lol.
@Autumn congrats on last chemo Mine is Monday excited, to be finished with one step of treatment.
@GoMama will mention the aloha lipotic acid to my MO. Congrats on the peach fuzz mine is starting to emerge too so exciting. Feeling like a bit like a chia pet. Eyebrows are starting to thin a lot though always seems there is some sort of a trade off with everything.
@HeartShapedBox will definitely check into the glutamine powder that sounds very promising thanks. Glad to hear your taste buds are coming back. That SE is so frustrating especially during the holidays.
@OnTarget thanks for sharing post surgery tips. It all seems so very overwhelming, but I know it will be fine.
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JRNJ- I'm so sorry that you're not getting the level of care that you should; you can (& should) absolutely fight to get the basic standard of care such as regular visits with an oncologist that coincide with treatments (which is a standard that all insurance should cover). But of course it's SO unfair to be put in the position where you HAVE to fight medical centers or insurance, when you should be saving all your fight for battling this disease!
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JRNJ, I think how often you see your MO depends on your treatment. I had blood work and saw my MO before each infusion when I was on TCHP. Then I had surgery and now I will be on Herceptin every three weeks for 7 months. During this phase I only see my MO and get blood work every third infusion.
I am still doing well and feel less chemoie everyday. My surgery was 12/12 and I had my Post-Op 12/19. My next follow up is in six months. My pathology report showed my tumor shrunk to 5mm, negative nodes and clear margins so I won’t need radiation. I was told that I can schedule a nurse to remove my drain once I go 24 hours with less than 20m. I asked for PT just because I read here that I should. Any thoughts? Do others here plan on doing that?
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DShelligirl-
PT is the best thing I've done! I had cording from my first surgery, so it was absolutely needed. I had my exchange in November, and I just started PT. It is already helping. My fascia is very tight and they are freeing it up.
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Thanks HeartShaped. It's not all bad yet, just a red flag. I was going to switch to Sloan but stayed with this Dr. because he was very supportive of getting additional opinions on chemo and flexible on doing what Sloan recommended. He's 10 minutes from my house and they give out sandwiches and snacks during chemo, lol. A nurse is present at all times in the group chemo room, so if I need to talk to her I can. It was just so busy, every chemo chair filled and she was a little frantic. Funny story I told OnTarget before, my Dr. paid Feds $2 million to settle Medacaid fraud suit, for buying nonFDA approved chemo drugs from Mexico in 2011. I read this before I met him, but everyone said he is a great Dr., so I gave him a shot and here I am. I guess I'm bad at following red flags, lol. I had a very bad experience with my BS, and won't go back. But my Drs. are all affiliated with each other, so it makes it harder to make these decisions, because a switch could mean 4 Drs. not one.
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Thanks, OnTarget. I went ahead and made an appointment for PT. Appreciate the advice.
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Following everyone; your advice, thoughts s, what we see all going through. Thanks for sharing.
My piece - now that my chemo is done , surgery scheduled for beginning of january. saw surgeon last week and I felt very disheartened. One I am starting to freak out more about the actual concept of mastectomy, but also - the recovery. He wants my arm in a sling (I think for a month!) And can't lift anything more than a pound (originally 5 pounds)pounds. Yes also plan to remove lymph nodes.
Anyone use a sling after surgery?
Glad to hear herceptin infusions aren't so bad, as I will start that as well soon.
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