Starting Chemo June 2017
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Pink ... glad your radiation was a bit better.
My knees are bothering me. Stiff and achy. Maybe because I got the flu shot. Maybe because I did a lot of city walking the other day. Walking "city pace" on hard concrete is not easy on the knees. Nor the feet. My feet feel swollen. The numbness in my toes is getting annoying. It's like that feeling when your toe pops through a hole in pantyhose or a sock and it "strangles" the toe making it pins and needles. I keep thinking "I can't wait to get home and take this sock off, but there's no sock to take off to relieve the feeling. boo.
Kim..I'm sure it felt great not going to chemo today!
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Peachy, Interestingly, I have had that sensation in my right foot since just a few months after my first husband died in 2011. That's why I was checked out for MS a few years back. It rarely goes away, so I have learned to deal with it. I was hoping it wouldn't get worse through this and it hasn't (nor affected my left foot), but I do have the neuropathy in my fingers. It has been very annoying, because of the nail pain (and slight lifting) with some nails but not all. I have trouble putting my necklace on, taking off one bracelet, opening certain things in the kitchen, etc. It seems better right after I wake but then gets worse throughout the day -- perhaps typing doesn't help. ??
I also have had a lot of achy joints...knees, hips, lower back. One week post chemo, I may see a very slight improvement, but I think it will take a while. Doesn't help that it's rainy and cold today.
Have you taken any OTC pain meds? I just didn't, but I guess I could now. I just try to take warm baths, with some Epsom salts, which help for several hours. I also ask DH to massage the achy joints. Of course I am in therapy 2x a week, too for myofascial pain (previous condition), and I always feel good right after. If I could just have the PT 24 hours at my house for a while! That would be awesome!
When all of this is out of our systems, we will be ever grateful for none of these SEs. I believe that day will come. Stay strong!
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Kim - I gave up wearing earrings now because it’s painful to put them on with my fingers. It is better in the morning , fingertips hurt in the evening even I soaked my hands with epsom salt at night. Maybe I need to soak it longer?? I have one more taxol to do then I hope things will get back to normal slowly.
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I have not taken over the counter pain meds. I will take one today, though, if my knees keep hurting. Recently, I have been waking up with numbness and tingling in my fingers-more on the right hand than left. I think it may have more to do with my sleep position. It does get better if I roll my shoulder and neck and rub them a bit. This morning they were very tingly and now after being up and active, it is very minimal. I have to touch my finger tip to see if there is still any tingles. The worst of the feet are the 3 toes in between big toe and pinky toe on my right foot. It's like they are frozen.
I've already decided I'm taking an epsom bath this evening. Maybe a glass of wine, too! Oh, that reminds me --The nurse at my pre-op testing put in a script for a low dose Xanax. She said low dose means "like a glass of wine" relaxation. She said it may be a good idea to take before surgery so I'm relaxed. She is the only one to have mentioned this to me. I've never taken anything like that before. She said take one to see how I feel. She suggested take one late afternoon after I've completed any driving around I need to do and will be home to see how I respond. I have 5 pills. Haven't decided if I will do this. Obviously, I won't take it AND have a glass of wine.
At my appt with plastic surgeon, we decided on placing an expander in at time of mastectomy followed by a silicone implant later. I am already asymmetrical. Lefty is smaller than righty and after mastectomy on lefty, if nipple sparing is not an option, the direct to implant reconstruction would be significantly smaller than righty. Enough so, that I would need to add something in my bra on the left to even things out. I was asked if I would be ok with that. Um...I don't know. I don't know how I'll feel about it without really seeing it and living with it after surgery.
Because it won't be determined if I will need radiation until after surgery, I don't have the option of living with a smaller left side for a bit to see if I can accept it. If I go direct to implant and then have radiation, I will not have the option to change sizing since the skin will loose elasticity.
The PS said if we go expander to implant, we'll have more time and control over gaining the best results. The expander will need to be fully inflated to desired size prior to starting radiation but I was told that is doable. I could then also decide whether I want to do anything with righty at time of exchange to match better. Right now, I'm not concerned with righty so am happy to have time to decide as we deal with lefty.
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Peachy- someone told me using 1 part vingear 4 parts of water that will help the nail pains. I meant to do that last night but I took an epsom salt bath instead I’m going to try that today.
It is raining outside, I might feel some joint pains today. I’m still in bed I’m in west coast so I better get up soon.
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Paulette, One more Taxol! Hooray! Thanks for the vinegar/water tip. I will try that...why not? I am so enjoying relaxing inside on this rainy day. My DH is making some homemade bread. Can't wait until it's ready!
Peachy, I am glad you have time to decide on things. It sounds like you have a thorough PS. I was on Ativan with the A&C chemo, but only for a few days. I have never tried Xanax. I would say it would not be a good mix with wine. ?? They have me on 75mg of Effexor, which is for my hot flashes - they are almost completely gone - and I read it is also for people with depression. I don't have depression, but who knows if it makes things easier to handle? I guess I will find out when I go off of it. I don't want those darn hot flashes to return -- at least until I am done with all my treatment, but I will ask my ONC about that. I am sure my body would like a break from all these drugs it has endured. Yowsa!
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Hap: It's 14 F (or minus whatever in C), snowing, but sunny! Wish I was where you are.
Kim: My nose has finally stopped running and my eyes water a little in the morning. Hang in there it does go away.
Peachy: All the best in making your decisions. We're all a little lopsided in one way or another.
I had a choice between Tamoxifen or Letrozole for my hormone therapy. She read the lengthy list of side effects for Tamoxifen and the very short list for Letrozole. I chose Letrozole. I figure I have had enough side effects for one lifetime, thank you very much. One of the side effects is hot flushes which I already have and I guess this means they'll get worse. Lucky for me I have snow drifts to jump into or in the summer the frozen food aisle. Another is bone, muscle and joint paint which I also already have. Not ready for a scooter just yet.
Not sure how expensive Tamoxifen is but Letrozole is pretty high and it's not covered by health insurance here. Somewhere around $100 for 30 pills. The only way I can get it for free is through the cancer clinic. They have some program they use to get it for free. This cancer business is expensive when you add up all the little incidentals, like OTC drugs, lotions, hats, scarves, and stuff that isn't covered by insurance, etc.
Nurse practitioner said I'll probably lose my thumbnails. What!!! I don't think so. They don't look that bad. That's my story and I'm sticking to it. She also said that fatigue can sometimes take up to two years to get over. WHAT!!! Funny how they add these little things in after the chemo is finished and not before. Asked her how long it takes for eye lashes and eye brows to come in. She said she'd never been asked that before and had no idea. Huh! Really, not one person is 12 years ever wanted to know that??? Am I the only person who wants to know that?
Can't believe how fast the radiation is going. By the end of next week I'll be half way through treatments.
Be glad when this is all over. Then I can go back to my rainbows and unicorn life and put this tropical storm behind me.
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HapB - how are you doing? Finally you got your power back? I know you have a lot of problem with Letrozole, I would like to compare Tamoxifen and Letrozole also.
Pink - I can’t believe TWO years to get rid of fatigue !!! I already knew this cancer thing is expensive, I moved half of CVS drugs to my house I’m trying to be good, I only have one ugly look wig which I don’t even use. I really should buy a good one so I can go out after chemo. But I’m so cheap and no energy for shopping. I look like a 80 years old lady with a hat. How depressing!!!
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Paulette: it is depressing with no hair and no energy. I agree why spend the money on something I’m not going to use once the hair grows back. I went back to the wig shop at the cancer clinic to pick out something different. They offer cancer patients a free wig. Well, the wigs made me look even worse than an 80 year old woman. I’m back to my pre-tied scarf.
Once chemo is finished you’ll start to feel better
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Paulette and pink. Have you tried wrapping your head. I like the scarves at wrapunzel.com. I bought a shaper with a velvet headband that keeps my scarves in place and has a pouf on the top to give me a little volume. There are videos on you tube of how to wrap them.
Here is a pic of me. I get lots of compliments and most people just think it is a fashion statement. This one is their signature scarf https://www.wrapunzel.com/store/wrapunzel-signature/
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Hap: did you switch to another drug? My friend was on Tamoxifen and she had really bad side effects. She stopped taking anything and has been fine for over 15 years. I said I'd give the Letrozole a try. Taking the drug only decreases the chance of return by something like 1 - 2%.
Julia: Thanks for the "heads up". My biggest issue with wigs is there's usually way too much hair. I'm not a big hair person. I've had straight, limp, fine hair my whole life. I tried getting a perm one time and well, let's just say it wasn't a good look on me. I have a couple of those pre-tied scarves that I wear around the house. If I go out, it's pretty cold here, I pull my hood over the scarf for extra warmth. The problem I have with my hair is that it's pure white so it's kind of hard to see if anything is happening up there. There's is a tiny bit of fuzz going on left over from the last chemo. It'll be interesting to see how all the hair comes back in especially for eyebrows and eyelashes.
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HapB, 70?! #jealous
I do miss those temps in the South. Doesn't seem normal for you this time of year. Weather is so unpredictable! I was told I would be on Tamoxifen for 10 years. I definitely will need to ask a zillion questions at my next appt with Onc on 11/28. As I told my DH, I want to know that I have done everything the medical team has suggested to eradicate this disease, but I also want a quality of life, too. I do think I have noticed some improvement over the weekend with runny, bloody nose. The Ocean Spray has been very helpful - a suggestion of a nurse of mine.
I never lost my brows and only a section of my lower left brows. At this point, am I out of the woods since chemo is done? Interesting to me.
I never wore my wig one time. I am going to donate it to the American Cancer Society. It was $400, but my insurance did reimburse me. I did/do embrace my hats and bandannas, and of course baldness at home.
I always liked hats before, though, so it wasn't a stretch for me.Yes, C is expensive. I try to justify all the hats, Kleenex, OTCs and such as a replacement for haircuts I didn't need.
I selected the top tier of medical coverage this year to have less out-of-pocket costs, knowing radiation is ahead of me in January. So my monthly premiums increased by $100, but I pay less in the end. It truly feels good to be in between treatments. I am in no way 100%, but psychologically it does something to your spirit to have one MAJOR phase of treatment accomplished. I think we must realize we are all different and at different ages, so the fact that it took someone 2 years to combat fatigue isn't the gold standard for us all. While it very well may, because look what we've been through, it very well may not.
Julia, You look great, and wear those so well. As a person who didn't like to fuss with my hair, I am pretty simple with my hats. I have embraced the reduction in time it takes to get ready to go places. It takes me 10 seconds to shampoo the fuzz, and 2 to towel dry the fuzz.
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Good morning, all! I have a couple of hair questions. How often do folks shampoo their regrowth? Are you using any conditioner or moisturizer? I've used Aubrey Organics for years, and now it seems too drying for my scalp.
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Julia - you did well with your scarves I’m a simple person, I just wear my hat. Hate wig I might need to get one for my dmv picture, I doubt my hair will grow that fast.
Kim - I love the ocean spray it helps so much for my dry nose. I have to take Tamoxifen for 10years, I haven’t even check the drug side effects but I read some ladies talked about the long list of SE, but some said they don’t have much SE. I still have one more chemo to do, would be nice to finish it then jump on radiation train wagon. How are you doing with fatigue?
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Kim: yes we are all different in our response to chemo and I believe you're right when you say age has a lot to do with it. I was just repeating what the nurse practitioner said to me. I'm already starting to feel back to normal. I don't plan on taking two years to recover that's for sure. I think a lot of our recovery has to do with our mindset. Good way to look at the added expenses. I hadn't really thought about the fact that I haven't had to pay for hair cuts. Glad to hear your nose is clearing up.
Paulette: Don't worry about the side effects. If aspirin was to come on the market today they'd have it behind the counter as a prescription drug because it has lots of side effects. I chose the Letrozole only because it has less side effects that were better for me personally. I think the Tamoxifen is probably the better drug based on how it works but because I've already been through menopause 15 years ago, I had the option of one or the other.
Power on ladies!
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Pink - I’m a golden girl also I have been through menopause for good 10 years. I guess I have a choice also.
I am hoping my SE and fatigue won’t stay for 2 years long. I believe it’s our mindset also if we make ourselves more active we should gain our energy back slowly. I just hope my taste buds gets better soon then my hair, and hope to get my eyebrows back. Am I asking too much??
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Hershey, I do a tiny bit of shampoo daily and conditioner just once a week or so. I am constantly rubbing my head...lol I'm sure anything is possible (after treatment) that we may not respond to certain things the way we once did. I am just trying to use up travel size bottles of shampoos to make use of them. I took a ton to church for Vets, then I realized I may need a few of my own as this starts to grow back. I will save the good stuff for when my head is fully covered again.
HapB, I have talked to a couple of women who had some serious SEs from Tamoxifen. I don't take it lightly. It concerns me, and whatever I go on, I will definitely keep my team in the loop of anything out of the ordinary. I used to be a person who wouldn't take a Tylenol for a headache -- just liked for it to run it's course. So, that's over.
This is definitely a less fatiguing day than all my many past Mondays, but if I need a quick nap this afternoon I will certainly listen to my body. I think we have to for sure, even as this continues along.
Hugs to all! Sunny but cold here in IL. Sun sure helps, because I wanted to go to bed at 7 last night with the time change! Makes for a longgggg winter.
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Kim - I need to follow your methods should try to use some shampoo and conditioner maybe I have better luck to see some hair grow.
HapB- thanks for pointing it out to me about Tamoxifen, I will read when I finished my chemo. I know I can be in the cloud especially the last few months. I told my close friends I changed to a different person now. Could be my fatigue makes me lazy.
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Several of the reasons I didn't choose Tamoxifen were: possibility of depression (already feeling depressed enough about having cancer), mood swings ( I think my DH will attest that we don't need any more of those), risk for cataracts (already have them and don't want them getting any worse), blood clots (history in family), changes in the endometrial lining of the uterus (already have endometriosis and don't want that turning into cancer as well). With that said who knows if I would have developed any of those side effects but I really didn't want to risk it. Like Hap said my personal medical history told me no to Tamoxifen. Too many red flags for me.
The only side effects that concerned me with Letrozole were bone loss and high cholesterol. I'm already on medication for high cholesterol and will have family doctor keep an eye on that one. Generally, my bone density has always been excellent and yearly testing will determine if there is any and they can make adjustments for that. Both of those side effects seemed more manageable to me.
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Pink - thank you for listing the SE that save me some time to research. You gals are so good when I compared myself to you all, I feel so lazy!
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Paulette, No comparisons allowed. Be as "lazy" as you need to be to get through this. No judgement here!!
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Kim - was thinking about you and thought I would check in. So happy to see you have completed chemo! I never wore my wig either during treatment, but I actually have worn it a good bit now that I am at the in between stage. This came as a complete surprise to me, but I just feel better in the wig right now. Hair is coming in at least 2 inches long and thick - lots of gray
. Who knows if that was already there since I have colored my hair for years. Not quite long enough to style, but getting there. When I was completely bald, it was easier for some reason - now I feel that I have enough hair that people will just think I have a really bad haircut haha! Pray you are doing well.0 -
ML, Two inches of hair sounds great! Thick (and even gray) sounds wonderful! Glad the wig feels good to you now. I do think this in between is more of an awkward stage. Maybe I could tape on a big pink bow like they do for baby girls with no hair. ??
You sound like you are doing really well! I truly feel like each day gets just a tad better. Is Tamoxifen treating you well? I'm so looking forward to spending Thanksgiving with family in NC. It will be an especially emotional and thankful year. Will be glad to be in the South.
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Kim -North Carolina is so beautiful too! My parents used to live there long before I was born, but we would go back to visit often. Yes - emotions are all over the place for me. I think the reality of it all sinks in once you stop treatment. Tamoxifen has not been bad so far. I am having high blood pressure and headaches since I started, so gonna have to figure that out. I see my MO tomorrow so hopefully she will have some answers. I want to take it if possible. My MO really wants me to have my ovaries out and then I would take an AI, I am sure she will be bringing that up again tomorrow. Other than that - not bad at all. My skin was pretty red from radiation, but that is clearing and looking good. I am working a good bit and able to keep up with my 3 kiddos, so feeling good about that
. I think you don't realize how run down you were during chemo until you are out a bit and you start feeling normal again. Radiation did wipe me out I will say, but part of that was that it was summer and I was on the run with my children, whereas with chemo they were in school and I could rest here and there. Have a blessed Thanksgiving!
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HapB, My "Taco" Belle. She is very sassy. This is my first female Schnauzer. At 9 years, she has the energy of a puppy still. She doesn't always rest when I do, unless bribing (aka treats) is involved. Love her, though. She used to chew on my hair, and now when I put my fuzzy wuzzy stubble in front of her she turns away. It is like she knows something is amiss. Schnauzers are super smart...too smart.
Can't tell you how many times I have had to chase that dog in my infamous pink robe. I have no shame among neighbors anymore. ML, My mother is from NC and Dad is from SC. The Carolinas are special to me. My DH loved his first visit to Asheville last year. It is probably in his Top 5 list for retirement. Glad you were able to keep up with the kids and that things are looking well post radiation. People don't realize how this is often an long-term treatment cancer -- I certainly had not one clue how involved this would be long term with years of HT. I had better start formulating my questions for my BS tomorrow. My DH had to go out of town on business, so I must listen very carefully tomorrow. (Still have chemo brain, so that will be a test...lol)
Interesting about seasons and how they can affect things. I was grateful to have chemo in the summer, because it was warm and there were things to do outside when I felt like it. Radiation will be gray and so cold, but what a perfect season to nap as necessary.
Sooo much to be thankful for this year.
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Kim - I think dog know us so well, my little one always stays with me and try to protect me since I’m sick. Since I have BC I haven’t spent that much time with her. As I said before I’m not being myself, I was a happy person before, now when I look at the mirror, I changed so much. I don’t even recognize myself.
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Kim - Asheville is where my parents lived .... beautiful. I love going to the Biltmore. I have been writing questions down all week to be ready for my appt today. If I don't do that - I would never remember. Will you be doing Tamoxifen?
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Thanks, y'all. Will definitely write down the questions and provide to MO. Yes, Tamoxifen is expected for me for 10 years.
Paulette, I feel that way when I look in the mirror some days, but I am the same on the inside. That's what really matters. Maybe I am better on the inside because of it.
Just released today, I briefly heard about a book by a rabbi - More Beautiful Than Before: How Suffering Transforms Us. I am not Jewish, but the lesson sounds completely applicable to what we have all gone through. I think I am going to get it.
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HapB, I am truly sorry you have all these other issues to boot. I pray you can rest well and not feel so alone through this. I can only imagine all the med changes do not help. If you feel like it, perhaps a warm bath would just soothe your soul. Prayers for strength, improved BP and heart issues and continued courage as you battle on!
Sounds like the book will be helpful to us both!
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HapB - I’m so sorry to hear thT your BP and heart problem, from what I heard you didn’t have this problem until started chemo. Will pray for you to get better.
Kim - thanks for the comfort, am I the same as before? I think my heart became softer and I have more compression now.
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