Starting Chemo in November 2017
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iris- my feet started swelling after my 4th chemo and never stopped. I've been on lasix daily since then. Idk which med caused it, but if it's the herceptin, it's here to stay for a while. I have neuropathy now, which started a little after my 4th and worse after my 5th. Last week she put me on b12, l-glutamine and folate for that, and it seems to be helping.i hate the swelling because it's Florida's and swimsuit season and I have no idea what my weight is because it fluctuates so much. I started a new diet to try and get some of it off. I thought i would loose weight during chemo, no such luck.
Blair2- I am so glad they are working on your back pain. You suffered way too long with no real answers. Hope you find some relief soon.
Just finished my second radiation treatment. The first one took forever with all the X-rays they were taking. I didn't even know they did my actual radiation until she told me I was done. I paid more attention today, no I realize the radiation part is the machine with the teeth like the movie alien. Every time I look at that thing with the teeth opening and closing that's what I see!
Tina
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Anybody having blurry vision? This is driving me crazy!
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Meow - I had blurry vision during chemo that got progressively worse. I talked to the PA at my MO's office about it and he said it's a common chemo side effect because the meds actually cause the lens of your eye to change shape! He also said that it should improve again post chemo as the meds leave ones system. At one month out I feel as if my eyesight is slowly returning to more or less normal again.
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Tina, glad to hear you started rads. I can totally relate to your dislike of the machines! I hope your swelling/neuropathy resolves soon. I have 5 pounds to lose. I need to get serious about it!
Meow I also had eye issues during chemo; blurriness and twitching. Both are completely gone now that I've finished chemo.
Blair sounds like you are doing better with the whole back issue, i.e. not worrying quite so much. No wonder it hurt so much with a fracture. Sincerely hope you get answers and relief soon.
Magari you sound busy and have a lot on your plate. I hope all of your appointments go well and that your port issue is mended soon.
Nonahope I pray you are feeling well these days.
Iris I hope you are doing well too. Like you I'm a regular these days at the gym. It feels good to be working on my fitness. I want to do some wonderful hikes this summer. It helps me to have a goal.
I thought my hair was looking better but got a reality check when a grocery clerk I hadn't seen since prechemo stared at me in alarm and asked me if I was ok. The look on her face was a combination of concern and fear. Then a guy friend told me my hair looked really bad and I should just cut it all off. I know these are small issues compared to what others are going through, but nevertheless, still not fun. Well it's back to the hats I go.
My eyebrows are coming along nicely. Eyelashes are a bit slower. Lost one toenail but it didn't hurt and there's a very thin one underneath it.
Hang in there everyone.
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Tina...Do you have difficulty walking with the neuropathy? Mine is so painful. It's throwing my balance way off kilter. The top of my feet are numb, but the burning pain is horrible. My right foot is worse than the left. It's only been two weeks since my last Taxol infusion, but I thought it would be gone by now.
Meow...Yes, I have blurry vision. I sit at night with 3-4 different strengths of reading glasses. Hoping this goes away soon.
Kivans....Except for the neuropathy, I'm feeling fine. I have my onco appointment today - hoping I get some answers for relief from the pain/burning. I'm expecting to have my Gabapentin increased, but I don't know. Will be starting oral chemo soon....Ibrance/Letrozole.
Hope
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Thanks girls for the comments. It sounds like we are all having post chemo issues that drag on. I wasn’t on chemo long enough to have blurry vision, but my eyes did water a lot and I remember them irritated from that. My lashes are also taking a long time to grow back. There’s only about 4 hairs to put mascara on - rather senseless to attempt! I can’t wear false lashes as my eye lids are creapy and too small. I don’t miss my eyebrows as they are shapeless anyway - no bone definition. Tina - I called the external rads machine a dinosaur- it’s definitely intimidating. I can understand your frustration with trying to enjoy our wonderful FL Spring weather!
Got home from the evening MRI. I had a contrasting type done which they injected more poison into my body. It took 45 mins. They redid the last two minutes because my muscle twitched. (I guess). It was so noisy that I didn't hear the music at all. I felt like I was in the middle of a sledge hammer, and aliens were playing an awful knocking, buzzing, clicking overture on a one-tune synthesizer. If you are claustrophobic, the tight tunnel might make you panic, but I just shut my eyes. Now the long nerve wracking wait for results! They took images from my ears to the tail bone. I'm so sick of anything medical. Just three more radiation treatments- then a bone scan, hormone therapy and a mammo next month.
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oh boy, i can relate to being tired of all things medical! Understand i was dealing with hydrocephelus and had brain surgery for it before i discovered my reocurrance of the cancer. At this point my hair is growing back nicely though i have a bald spot on the right front from my hydrocephelus surgery and thinking it will not come in there. But my cleaning gal who sees my only monthly, she just showed up and said wow, you have hair!
I try to get to the gym but my pt person has only approved me to do the stationary bike. I have a tumor on my spine that is inoperable, but my social life is sort of built around my gym. But i see the pt gal weekly so that is a form of excercise and we do a lot of laughing there.
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With the blurry vision, I wear bifocals, so readers would not be helpful. I have to close one eye to get my vision in focus when I'm having a blurry episode. Fortunately, it isn't a constant problem. But yesterday it was persistent, very frustrating. I finally just went to bed, going it would be fine by morning. I'm officially 3 weeks PFC, and looking forward to side effects continuing to diminish.
Here's hoping everyone continues to feel better, our hair grows, and test results are good.
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I have not been to eye doctor sincemall this nonsense stared, keep thinking i need new glasses as vision aint what it used to be, lord knows but i can not read type on tv and lots of other placex
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Meow it won't take too long PFC to lose the eye issues. Physically I feel very normal now. It's something I really appreciate. You'll get there.
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hope- it makes my feet feel numb, mostly my toes and the bottom of the front half of my foot. It is sometimes painful when I am in bed and interferes with my sleep. I worry because I am on feet all the time and I am not sure if I would feel pain if I had any. They mostly tingle and like you my right is worse than my left. I even get it in my right fingers from time to time.
Blair2- praying He mri reveals a solution for you!
As for blurry eyes. I got new glasses the day of my biopsy, they weren’t any good to me until 4 weeks after chemo, just used cheaters. It was like my whole prescription changed.
Tina
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Tina...I am so off balance that I could never be on my feet all day. My onco upped my Gabapentin to 600 mg. a day. Hoping that brings some relief.
Hope
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feeling pretty good today, after yesterdays pt visit i feel really positive. Had 9am manicure visit this morning so have fresh pink nails, also an upper, then hit the gym for a short time on the bike and to check in on a couple pals and now think l deserve some rest time. Saw a pal at the gym, he is recovering from a stem cell transplant, he was looking good as well
So on this great spring an ice tea on the deck sounds good to me
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Iris...So happy to hear you are feeling really good! Keep up that positive attitude. I'm trying, but some days are really difficult.
Hope
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Nonahope - wish you would feel better. The burning and numbness has to be hard to live with. Walking has to be miserable. Hope your oncologist increased the Gabapentin, or maybe prescribed a better drug to hit those awful side effects. I don’t like hearing this blurry vision business going on with a few of you either. I know if I ever have a recurrence of cancer, that my body just won’t be able to take it like what you have had to deal with. I guess you have to learn to live with the side effects and hope it’s killing the cancer cells. Anyway, hope you will begin to feel better soon.
My back still nags at me. Didn’t get any immediate calls or shout outs to have a biopsy done these last two days, so hopefully the scans are showing bone damage and not cancer. I figure if no calls Monday - then next Thursday I’ll learn the final outcome of what’s wrong with my back. I hate waiting for results. Why can’t they just tell me - no cancer fears, we’ll discuss your damage later! I still don’t understand why my back didn’t hurt when I fell if I fractured it.
Anxiety from this journey is enough to drive us all crazy! Research and treatment have a long, long ways to go! Doctors have too many patients to deal with, but they need to be better at listening to each patient intently and write down in detailtheir complaints.
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hope, i try hard to do something fun or something for me everyday, i know it is at times hard. I confess to talking an antidepressant as well, it is really mild but it helps. Course my pt person is incredibly helpful also.
But understand how you feel, times just a cup of tea while sitting outside works, how are your grandaughters these days? I remember they were so important to you in the past?
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Hello fellow Novembers,
I’ve been on here a few days. I started chemo in Nov 2017 also, AC then Taxol and finished at the end of Feb. I have also had a double mastectomy at the end of Mar. I still need one more surgery Im hoping to have by the end of summer. It is so great to read your experiences to understand what I’m going through is normal. The more I read the more I learn. Thank you!
Has anyone else gained weight from chemo cocktail? If so, what are you able to do to lose? I must return to work soon and can’t fit in my clothes.
Also, my memory is gone. Is anyone else experiencing this? Any ideas to improve?
Thanks for all your replies and I’m so happy to finally not be doing this alone
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Retzie, I was on a local weight loss program before my diagnosis that was working for me, but I had been stalled about 6 months. I stuck to the eating plan during surgery and chemo, except wasn’t afraid to stray now and then, but I have to exercise to not gain weight. I’ve gained about 10 pounds. I struggle to find the energy to excercise faithfully. The program I’m on recommends 45 minutes of low impact cardio exercise 5 days a week. I know if I follow the program it works. I need to back in the swing.
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Retzie- I gained 30 lbs during chemo. I blamed it on the steroids because they had me starving and I have a lot of edema. I am 7 weeks past chemo and I couldn’t loose anything plus I still have swelling. Last Monday I decided I have had enough! I started my 7 days of the cabbage soup diet and so far I have dropped 10 lbs in 5 days. You can only do it for 7 days at a time. Hopefully I will keep going on the right track and get back down. I’m doing radiation and they told me not to loose weight because it moves the markers and I pretty much told them that wasn’t going to happen. I am not going to be like this anymore.
As for memory, I was fuzzy. Not really memory loss, but it took me longer to say what I wanted to and I r ally had to focus. Especially when driving. I have noticed it seems to effect you worse the older you are, and I don’t know your age. Mine is completely back to normal now. The only residual I have left besides very little hair, is the neuropathy which they prescribed vitamins for and the swelling which I take lasix for. I would suggest talking to your MO and see if they have suggestions, but my guess is it will be vitamins that aid in memory function.
Good luck with the weight loss. I feel for you, I had to get new work clothes as well since I couldn’t wear my regular ones anymore, I just keep washing and wearing the few I got. It sucks.
Tina.
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Tina, my goodness 10 pounds in 5 days? That is impressive! You go girl!
I have been going to the gym regularly. It's really helped me feel better but no weight loss yet.
I don't have swelling but I think I have inflammation as the cheeks on my face are red. I've never had rosacea so I don't think it's that. I don't know how to get rid of it. My hair has been growing but it still looks awful. People tell me it will look normal again but right now that's hard for me to believe. I'm shaving my legs but have no other body hair except for eyelashes and eyebrows which are decent.
Here's to all of us getting beyond are side effects.
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klvans- I am the same with my hair, the pack looks pretty decen, it’s coming in normal andnthick, but I’ve got this horseshoe thing going on in the front and it’s not growing very fast!! I just want to quit wearing caps all the time!! I may have to trim it a little, I have these stray hairs, that are two inches long, sticking up in random areas. My eyebrows went south way after I finished chemo and they are finally coming back slowly. Crazy how long the side effects are lasting. My nails are still shot, but I did put gel polish on them here at home in the hopes to keep them from breaking off. They were fine during chemo and they are shot now. Grrr
Tina
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Tina, i had bad splitting nails for some time and was worried that it would be painful. I found a nice nail salon in town , told her i was in chemo and she said no worry, i have worked with cancer patients before. She did the gel polish and i go back about every 2 weeks and they look great and i get many complements . They actually grow! Now my hair, well it has been coming in as my current chemo pill does not cause hair loss. Now if i could just get more energy......
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Yes the side effects from chemo last way too long!
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Blair...My onco did increase the Gabapentin to 200 mg. 3xday, from 100 mg. 3xday. I've only two day into the 200 mg., but so far I can't tell any difference. I'm sure it takes time, but I'm in so much pain (especially, at night) and I can hardly walk. It's like my right ankle doesn't want to bend and my toes are numb. I am just praying this is not going to be a permanent thing. I went to bed at 11:00 last night, woke up at 2:20 with burning and painful feet. Finally, fell back to sleep at 3:30 or so. Awake again at 5:50, so got up and took a 100 mg. of Gabapentin and an Ativan, plus an ice pack to put on my foot. I've been up ever since. I go to bed at night wondering what the night will bring...it's been horrible
It's probably a good sign that you didn't get a call about your results.Iris...With my difficulty walking, my "fun" consists of reading and knitting. Oh how I wish I could get out and about.
My granddaughters are doing great. The oldest (Emily 28) got married this past August. She and my other granddaughter (Meghan) are the artistic directors and instructors an own their own studio (Prestige Dance Center). This is their 5th year and it's doing great. In fact, there was a dance convention/competition in Akron this weekend. I've been watching it live-stream. Too hard for me to travel. Another granddaughter is at college and the two other ones are in high school - one a junior and one a freshman....she's the baby of the family now. The two grandsons are out of college and working. They grew up way too fast.Retzie...When I was on my initial chemo, 8 years ago, I lost about 25 pounds. I just finished 15 rounds of Taxol and my weight stayed the same.
Tina...Wow! That's a great loss. Now to keep it off -- that's the hard part.
Enjoy your Sunday, ladies!
Hope
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Nonahope, just wanted to say I'm sorry you are having a hard time right now. I pray the Gabapentin kicks in and you find relief soon.
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Yes, hope everyone gets their weight under control and hair and nails start growing. My hair is only half inch long, but glued flat to my head and so thin that I still look bald. Darker at the nape and very white at the sides. Nails are stronger than ever - chemo must have cured them. They didn’t grow during chemo, but seem to have gotten stronger and taking off in growth. Always split before. Very strange how our nails differ.
Nonahope - I’m so sorry you are suffering so much with pain. So not fair. Maybe you need something different for the pain. Ativan (lorazepam) was what caused my legs to collapse when I fell! I think it along with chemo drugs just hit me too hard. I suppose all you can do is tell your doctor that the gabapentin isn’t doing very well. I hope you get some relief soon. Maybe as you say it takes a while to work, but if it bugs you again tonight - give them a call first thing. You need relief and sleep! I wake up with my back bugging me from time to time - that area smack in the middle of my back where the fracture is.
We are under a tornado watch and a cold front is coming toward us. Wind is picking up. These fronts cause havoc with warm air, so not looking towards the storm front. I hope I don’t get a call from the clinic about my back tomorrow. I’m still nervous about it. However it will be good to have my last day of radiation finished. My breast is very red at its top. Itches all the time, but ignoring that itch!
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I find the gababentin to be a really wierd med. When i was dealing with my back issues i saw folks on line taking huge amounts of it, as in thousands and they frankly seemed addicted and pleading for more. Wierd, i really do not get much relieve. My doc did give me something called tramadol that is an nsaid that works on lower back.For me it worked but after about three days i would be itchie! And my pt person at the time said he could tell when a client came in and was taking it, they acted ditsy!
Hope, so nice to hear your grandaughters doin well, dang but my nephews are so tall feel like a midget around them! My current pt at the hospital has me doing exercises to strengthen my ankles as she thinks that is what caused me to fall. They have really helped me and honestly seem so stupid easy. I could figure a way to get them to you if you think they might help with your walking, it sure helps me to get out more as my legs are getting stronger
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Blair, my stasts are almost identical to yours, onco 28, right breast 2 lumpectomy, same kind of CHEMO will be starting soon. You must be done...how did it go? Any advice on coping? I feel in a real funk and scared every twinge I feel is further cancer. Surgeries, well that was one thing...CHEMO, not so much, it just has me crazy
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Kivan...Thanks for your support. A bit of research says it takes a couple weeks for the Gabapentin to kick in.
Blair...The Ativan doesn't affect me much. I take a very low dose - 0.5 mg.- that helps me get to sleep and I never wake up groggy etc.
Hope that tornado remains just a "watch"!Iris....The onco said that getting the correct dosage of Gabapentin is by trial and error. That's why I started out with a very low dose. I haven't had any side effects from it yet. He told me it would make me sleepy, but it really hasn't. I took Tramadol when my back pain was so bad - it did nothing but make me sleep. In fact, I think I still have some around here.
Are the exercises easy to explain? If so, you can send me a PM. I've been looking on line for exercises for neuropathy and I found one where you take a belt and place it under your foot, with your leg straight out, and pull forward towards your ankle. I've tried it a couple of times, using the belt to my bathrobe. It seems like it would help strengthen my ankles, but it hurts. There a lots on YouTube. I think it's the fear of falling that is really getting to me.Time for dinner! No cooking for me today. I'm having a Healthy Choice Cafe steamer - Margarita Chicken and a spinach salad.
Have a good evening!
Hope
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Hope.....i think i can explain some exercises. The other thing that has really helped me is using a rollator around the house. If you goggle it you will see, it helps me to get around the house better, my pt person convinced me to try it. Medicare pays for it but they are less than 100dollars. Since using the rollator i am doin more walking in the house, much more than when i was using the cane in the house.
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