Starting Chemo in November 2017
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well i am now doing pt at sloan kettering, they have a small pt place but therapist is teaching me how to not injure my dumb back. I was sceptical at first but now i see the benifit. She promised me i would be back in my old gym soon. She is showing me how to move correctly and not listen to gym trainers. Great as i had grest experience with the gym folks but also some not so good
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Well - this is a bit hard to tell you the following. I have mixed emotions about it. Today was suppose to be my last treatment. I feel a bit like a failure.
Much to my surprise, my oncologist advised me not to take last treatment today, because of my suffering so much with the third treatment. (I knew something just wasn’t jiving comparing my side effects with the rest of you, and I’m still suffering from the last treatment). I’ve really haven’t had any good days. I had a low grade fever all week, watery eyes, some swelling in ankles also that I could care really less about, but just have not felt well at all. My red blood count is down somewhat, but otherwise the lab was good at least. She literally said she wasn’t going to give me the option for my last treatment. I couldn’t believe it, and wasn’t excited about it and so the hundred questions started in. I think my heart condition had a lot to do with this. She said that even with the three treatments I had, although it's not known for sure what my recurrence rate would be, that it would be less than the 18% with just the three. So with my back pain being so bad, and how bad I felt, I decided - ok, maybe this wouldn’t be so bad to stop. I felt a bit guilty about it, but the 2-3% difference (if in fact that’s even it) isn't going to be anything to worry about at this point for me at my age. My body is exhausted. Even with all 4, I'd still have a 10% recurrence risk anyway. So I'm just going to put the chemo behind me and let it go, and hope that whatever was in my bloodstream is dead, what's not, stays away from my other organs. It was a tough decision for me to make, and I didn’t like it. I'll try to keep telling myself that I'm 88% protected. (Well, that's only after the radiation is done, and 5 years of the hormone treatment). She also said that there is a lack of research for people who quit total treatments, but some with doing just half of them have lived on many years. There's no crystal ball for doctors to know. There is no formula of it either, much to my surprise, because of lack of research. I discussed this in depth with her. She said I had a greater chance of dying from my heart disease - which is my choice between the two diseases - if I had that choice. (My cardiologist had told me 3 years ago, that on average I had 10 years with my heart condition!) I was really dreading today - thinking I would end up in the hospital in the next few days. Then, because chemo has been known to cause other cancers (although rare), I couldn't help wonder what the hell it was doing to my back! This back pain is still with me on the pain and muscle relaxant pills. Not as bad, but very much there, just dulled. I’m frustrated with this too as I can’t even move or stand to long. I hope it’s not a permanent thing.In about three weeks I start radiation and hormone therapy. Right now just trying to feel normal again. I've gone through the ringer! Afterwards, my friend drove me around on a field trip looking at condos after we left the clinic, and we ate a small lunch. I was kind of tired the whole time. She could tell. I now need a nap! I'm exhausted, but I enjoyed getting out of the house and the weather was so pretty and warm. The sunshine is therapeutic to the way I feel. Been stuck in my easy chair for ions it seems.
Girls, please don’t stop your treatments or think because I quit mine, that you should/could do the same! No - stay forward as I’m so impressed with all of you! I hope you don’t think I’m weak, maybe I am, but the cons just out did the pros in my case. I’m much older than most here with a heart condition, and this makes a big important difference. My body is not as strong as it used to be. I’m comfortable with my rate of recurrence. In many cases, women with more advanced cancers don’t even have even a higher chance of recurrence, so I still consider myself lucky. We cannot control our ending fates regardless in life as far as what will happen. You have to fight it the best you can! I hate to tell you that there was no bell ringing for me today, but I’ll ring my own some day if I live another10 years!
Kat - nice moon photos - hope upcoming surgery goes well for you.
Meow - hang in there with your upcoming treatment. Hope your side effects have improved.
Kivans - best of luck with Sunday’s infusion!
Tina - so sorry you are suffering and wished it had been your last, but you are very strong!
Rljes - nice den furniture and hope you’re hanging in there as well. I’m impressed with your persistence.
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Blair...I'm glad the decision is over and you can move on. Your oncologist sounds like a very caring person. You've suffered much more than most of us. A person can only take so much. I wouldn't even think about my future as far as recurrence. Just enjoy each day as it comes. I bet you'll be around a long time. Radiation is a piece of cake. And, the hormone pill might cause a bit of joint pain -- at least mine did. But, your major suffering is over for now. Hang in there...you are not weak, by any means. You know your body better than anyone and you did what's best for you!! Hugs. I bet you will feel better each and every day!!
Iris...hope the PT helps your back.
Hope
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Blair - Thank you for sharing, and I'm relieved to hear that your oncologist supported the decision to move your treatment forward to radiation. Under the circumstances, it sounds like that was absolutely the right decision for you.
Glad also to hear that you were able to get out and enjoy a pleasant afternoon. We've had lovely weather here the past few days and I've been walking to do errands out in the fresh air and sunshine - nearly 4 miles yesterday (in 2 separate trips) and another 1.5 miles or so today. Washed linens and hung my sheets on the line in the backyard, which is a simple thing that makes me so happy.
Best to everyone for a good weekend. I plan to hit the farmer's market Sat and am attending a baby shower on Sunday.
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Hope, i feel really positive about this pt person, she is really experienced with folks with nasty back issues
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MK86~Congrats on being done!! Best of luck with surgery next month!
Blair~Congrats on you being done as well! When your body is worn out it is worn out! I only did four and it kicked my patooty~I'm still anemic and my last chemo was over two weeks ago. I also had shingles. I have an autoimmune disease in addition and that had caused fatigue so adding chemo onto that really zapped my energy. I am glad that you can start the process of healing, building back your energy and strength and hopefully get some relief from your back pain. I just had the mapping session and got the tattoos for radiation today. Will start that in just over a week. We'll be radiation buddies soon!
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Blair, I'm so glad the decision is over. I agree with Hope, you are not weak at all and you know your body better than anyone. You definitely deserve to ring that bell. I bet you feel better and better as the chemo drugs leave your body. How wonderful to get out and enjoy the mild weather. These days I find it's the simple things in life that make me happy. Enjoy each day and many hugs and best wishes to you. And may that pesky back heal quickly!
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LizabethM, what are your tattoos like? What do you think of them?
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Kvlans-I got five and they are like dots made by a pen but they are permanent-I cracked a lot of jokes today about finally getting tattoos! Ha! The mapping session didn't take as long as I thought it would. I remember when they made the appointment telling me to plan on two hours but after the mapping, tattoos, and going over possible side effects with the nurse, I was out in less than an hour.
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Blair, I stopped by to check on you. I know it was emotional to hear your doctor’s decision. I’m glad to hear you have processed it and are ready to move on.
The 3rd week anniversary of my last treatment was Wednesday. I expected my body to feel better everyday, but it hasn’t. My legs and feet are swollen. They were a little after treatment 3, but nothing like this. My muscles and joints are achy. I can feel hair stubble on my legs. Yuck! I think the gray hair stubble on my head that never fell out has grown a few millimeters in the last few days. No sign of my dark hair yet.
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Blair - I realize that this is a hard journey. Please don’t think that your avenues are over. You can practice holistic therapies. I honor your decisions and I will continue to pray and send good vibrations your way. Much love.
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Thank you girls for being so understanding - I’m surprised many of you support me as I really feel a failure about it. I regret I couldn’t do it, but I was also very afraid of going through it. I went there yesterday with ice pack in toll as I had in all other treatments thinking I had to do this. I’m still shocked my doctor advised not doing it, although if I had really wanted to, she would have let me do it. That’s what made it hard. My friend Nancy who went with me even asked her if I had been her mother, would she advise her to go through it, and she said no. It came down to the realization that my heart risks were probably worse than the cancer risk, but we all knew - there’s no way of predicting the future outcome. It’s a scary thing.
I’m angry at the fact when I had my bypass three years ago, it changed my lifestyle through the realization that I had to live better and that I needed to change my eating and exercising habits. I was only 18lbs. over present weight, cholesterol at 153 at time of bypass. No high blood pressure, unless nervous. I never smoked. I was tested by my cardiologist who thought it was odd that I had no signs of heart disease, and results were I had hereditary heart disease, which is not a circumstance I can control, but I still had to change habits to protect myself better. Eating too much fat all my life surely contributed. I gave up eating bacon, butter, all fried foods, fast foods - unless a salad, red meat, sausage, pork, sour cream, ice cream, all cookies, (still ate a piece of birthday cake and pie once in a while), watched intake of mayo, bought all reduced fat items, cut down on eggs and cheese. I do still eat chocolate from time to time, but sugar is my worst thing to control, although I use stevia in coffee and drinks. I started reading labels for control of sodium and fat in all my processed foods. I increased intake of vegetables and fruit and even paid attention to how I prepared my meals. The blandness of taste was something I forced myself to live with, and thought I was doing a good job. Not perfect, but good. (Who is perfect?) My cholesterol was great and so thought things were under control. I’m angry that I also exercised an extra 6hrs a week and took walks, and always busted my butt doing yard work and handyman jobs around my home. I was never physically idle anyways. I had a proper BMI weight. I was feeling good this past year about myself. THEN - Out of the blue came breast cancer! WHY? - when I worked so hard to ween off the bad, changed the diet, and exercised. WHY? I actually poo poo the articles now that stress one to eat and exercise like it’s a great preventative. I look at that as BS. I won’t change or ever go back to past habits, (I don’t know, sometimes I wonder if I should!) but it makes me angry that my body has done this to me. It’s like my mind and body are no longer connected and I’m just plain angry.
Ok - enough of this.
Orangedaisy - you just have to get better from now on. Be proud you got through the chemo and each day keep telling yourself it will get better from this point on.
SDK8 - I will continue to eat and exercise as much as I can. Will look into holistic ways, any great sites that you know of? Maybe a book about it would be best to find.
Nonahope, Magari, Kivans, LizabethM - thank you so much for understanding me. I will be here supporting everyone that’s going through this awful time. My next appointment is March 2nd for a follow up, lab, and scheduling of radiation treatments. I also found out that my hormone therapy drug will be Letrozole or Femara after radiation. (Just don’t give me back pain - pleaseeeese!)
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Hi Everyone, Chemo #4 Day 5
I had my MRI yesterday (wore a mask and gloves - I was the only one that did) (for left hip pain to see if blood flow being blocked to bone) - barely made it thru phase I, it lasted 45 minutes of laying flat on my back without moving. I used to be so strong. It hurt so bad. I couldn't talk myself into the 2nd part with contrast. Hope it was enough. They seemed to think so.
I could barely put my shoes on because my legs kept cramping. Hope the Potassium helps soon.
Soon, one of these days I'll be a happy camper, join the YMCA for after care and I won't be such a winey person. Sorry.Does anyone else feel really- really tired? I take Truman for a walk everyday, and can barely make it a mile. Usually have to cut it short, hard to breath. Feels like I'm walking uphill under water.
Meow & Mom4 - are you going to do RADS after Chemo? I hear you about falling. My legs feel so heavy the day of chemo and after. I use a cane.
mkn86 - your personal photo is beautiful of the moon. Looks like a cherry. When is surgery?
Take care everyone!
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Nonahope, have gotten any hebal teas? I am sipping on a new one for me, apple spice
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Blair - you are NOT weak, and you are NOT a failure! You have soldiered on through horrible side effects for weeks. I am relieved for you that chemo is over, and I bet once the poison is out of your system, your pain will go away and things will begin to heal. Love and hugs to you. Congratulate yourself for getting through so much.
Rljes - yes to radiation. Fourth chemo coming up this week. Getting IV Infusions with steroids and anti-emetics several times in between treatments made a huge difference for me. I actually felt more like myself this week than I have in ages. It's gotta be the steroids giving me energy (and a puffy face!).
I've decided to do genetic testing. My doc originally said I didn't qualify because of my age. But I have Ashkenazi heritage, and that automatically qualifies me for testing. My daughters are 24 and 26. I have 4 sisters and lots of nieces. They all need to know if we have the gene so they know how vigilant to be. Has anyone else done it?I've been wrapping my head in scarves... just could not deal with wigs. I post my "wrap of the day" on Facebook for friends and family, and they have been amazingly supportive. Here is yesterday's wrap, which is made from recycled saris. It's one of my favorites. Serendipity - I had that necklace in the drawer. They really are perfect together. My eyebrows are holding on (although thinning I think) and my eyelashes are definitely starting to thin. Anybody else?
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rljes- yes I have to do 4 weeks of Rads, 5 days a week. Luckily they are scheduling me the last appt of the day so I can work.
Meow- love the scarves. I stick with bandanas because they are just easy to throw on at 4 am. And I hate wearing the wig.
Blair2- don’t think of yourself as a failure ever! You have given everything you had and then some. You have suffered so much more than the rest of us and are still willing to go further. I give props to your MO for taking the option off the table for you and not leaving the choice up to you. (Even though she would of given you the last Tx if you pushed). They know how you are suffering, and as bad as chemo is, no one should have to suffer needlessly. Hoping this starts to improve your health and brings you some peace and relief. Because deep down you had to feel some relief from know you won’t be subjected to anymore chemo. I know I would have no matter what. You just move forward from here and that’s that. No looking back.
Tina.
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Thanks Meow for kind words - that necklace goes perfect with that scarf. It's not noticeable that your brows have thinned - anyway, your eyes are what people will notice first. I had to look up your Jewish heritage and found there are certain genetic diseases in the dna of Ashkenazi heritage. Is that what you are checking for? There are so many famous people who are Ashkenazi Jews such as Einstein, Carl Sagan and Steven Spielberg. I couldn’t quite understand why there are these diseases with just the Ashkenazi heritage.
Rljes - that MRI had to be uncomfortable for you and I hope there’s no blocked blood flow to your hip bone. Keep us posted on results. I don’t know how you walk Truman with your hip pain, but maybe it’s good you keep it somewhat exercised. I have tried to stretch my back, but it hasn’t been much help. It still bothers me, just dull from pain pills and muscle relaxers. At least I can sleep on my sides, just can’t stand for long.
Tina - I feel so fake with a wig, but I only wear them for appts. or if out, which I haven’t been out much other than grocery shopping. I wear beanies or scarves around the house mostly. The wigs are thicker than what my natural hair was, so that bugs me a bit. I want to get a really short one with a good monofilament top or lace front for the warmer days.
I’m still pooped. I mostly just sit in my easy chair as I still have no energy at all to go anywhere or do anything (and can’t because of back). I can ride around as long as I’m sitting. I alsothink I’m depressed over this chemo thing. Still can’t believe that my oncologist didn’t try to talk me into doing last treatment. I hope it was the right decision.
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meowmmy I am BRCA2 positive and a member of the FB BRCA Sisterhood group. Many of the members have Ashkenazi heritage. Many of the young women have had prophylactic bilateral mastectomies. I am amazed at how many! Your scarf is beautiful. I need you to help me shop and decorate my head
My leg swelling is a little better today, but my feet hurt from the pressure of the swelling. I have fat toes! I hope this too shall pass.
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blair, please don't be so hard on yourself. you have done the best that you can do and also the doctor, it's their job to guide us through treatment. trust that their decision has nothing to do with your strength and resilience as a person
and if anything, they may have done the right thing. my oncologist was always weighing whether one more dose would have enough benefit vs. the risk of me having another allergic reaction. the other way to look at it was, my body was reacting against the medicine when i was not telling my doctor about taking a break from chemo. I was tired of dealing with the side effects all day.
It did me more harm to push through with chemo on schedule than to allow myself a fee days of delay with some of the infusions. i hope that you rest a bit. and donsomething that you enjoy. Be strong blair but also, be proud of what you have accomplished. because we are also proudnof you. :
ladies, i thank younfor your messages! I am still dealing with fatigue today but i promise to catch up with reading.
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Thanks Kat - you’re a sweetheart. I too wanted to extend my healing time between my 3rd and 4th, but for some reason they said I couldn’t do it that way. I guess it has to do with the different chemicals and power of treatment between treatments.
Orangedaisy - my ankles show swelling by end of day and I’m sure there’s somefluid build up in my legs too. I would think in time this will go away. Salt in diet will aggravate it, so trying my best to stay away from anything too salty.
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Happy Sunday!
Iris...I'm glad you are comfortable with your new PT person. Feeling positive is the name of the game. I did buy the Celestial Seasonings Black Cherry Berry tea...I like it! A warm cup of tea in the evening is more soothing that a bottle of water...especially, with the cold weather we've had.
Lizabeth...Good luck with rads next week. Those were my tattoos, as well. They did fade away with time.
Orangedaisy...Sure hope you feel better soon. Everything takes time...but, you will soon feel like your old self again.
rljes....Oh, my. I can relate to the painful MRI. It is torture trying to lie still when you are in pain. Sending healing vibes for you and praying for good results.
Meow...I've never had the genetic testing, but know others who have. Keep us posted on the results.
You sure have a way with scarfs!! Love your latest look...just beautiful.Tina...I'm glad you were able to get a schedule for your rads so you don't have to worry about missing work.
It's been a busy weekend...Friday was a "Reveal" dance production for my granddaughters dance studio. It was an on stage reveal of all the competition dances that the team will be performing in upcoming competitions. We went to Applebee's afterwards and I didn't get home until midnight! That's the latest I've been out in a long time. I'm usually conked out by 9:30 pm.
Then, I worked at the studio yesterday morning and went to the grocery afterward. Today...is day 3 after Taxol #9....I will be lying on the couch most of the day today as the aches take over!Blair...I hope you're feeling better with each passing day!
Anyone going to a Super Bowl party? My daughter is having a pasta and taco bar...I may go for a little while, depending on how achy I am as the day goes on.
Hope
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how are you ladies? hope you are fine . I had pain in my stomach and the end of my esophagus. did anyone experience pain in stomach during chemo?
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morning group, not a football fan so tv will not be on for me.
Hope, glad you liked the herbal tea, me i have about a half dozen in my stash at any one time. Coffee done so,on to one of,my,fav red zinger. I know i need to drink lots of fluids so each day is dif. Funny as i have pal how when i visit, she,whips out her stash!
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Hello ladies. I'm actually in the December chemo group but lurk here to get an idea of what's to come. I am so inspired by your mutual support and information. I am on Day 2 of "full" Cycle 3, (weekly Herceptin) with 3 more cycles to go. Here's some things I've learned:
Dry fingers, toes and heels: they could be from mild neuropathy. I started with dryness and it has progressed to warm/hot pain, tingling and even phantom tingling in my lips and around my mouth. My MO dialed back my taxotere by 10% this cycle, hoping that it will lessen the neuropathy. As with most side effects, he said that it will reduce after chemo stops. But he would not guarantee that there might not be some permanent impact. A little research (Dr. Susan Love Research Foundation, among them) shows that could be true. So I took ice packs to this cycle and used them on my hands and feet while the taxotere was going in. MO was neutral on this because there are no definitive clinical trials, but many on this board have used icing (like cold capping) and have not gotten neuropathy. I am Type 2 diabetic, so this was worth my time.
Books on holistic treatment: I have been inspired by "Anti-cancer: A New Way of Life" by David Servan-Schreiber, MD, PhD. A fellow BC survivor recommended it to me and I found it to be a very conversational way of transmitting some of the latest research into things each of us can do to counter the "cancer environment" we live with. Not preachy or "all or nothing". He lived for something like 17 years after a brain cancer diagnosis embracing both conventional and alternative approaches. So there's little things in there I am using now, and may use for the rest of my life.
Thank you for all your positive energy and most notably, your support for Blair. I have you all in my prayers.
Mindy
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Diveslikeagirl - thank you for thanking my girls here for me - I love them all! Also, I’m going to check out Schreiber’s book you recommended. Sounds like it might have some good ideas
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Hi Mindy! welcome to the November thread! i also sneak a peek at the december and october threads too.
And to be honest everyone has been so amazing and supportive. i suppose it truly helps to know that we are all going through the same thing. fears, worries and even what we celebrate despite the circumstances.
Someone has also recommended the same book to me. I’ll try to read that next.
Since diagnosis i have a sort of “sublibrary” of cancer books... some given by friends and some recommended by others going through cancer treatment too. It’s kind of set aside the other books... Kind of like how we all of a sudden end up with this big divide in our life of pre-cancer vs. post-cancer. (Might not be the most accurate but you get the gist — sorry abiut that)
anyway i hope everyone had a good weekend! and had fun watching the superbowl!
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Iris...Good idea to have a "stash" of the tea. I try to stay away from too much sugar, but I can't drink tea without a little bit of sugar...even the flavored ones. I won't use the artificial sweeteners.
Mindy...That book sounds interesting. I'm going to check it out. I have a cookbook that I use all the time. "Eating Well Through Cancer" by Holly Clegg & Gerald Miletello, M.D. It's full of great recipes for during and after treatments... with lots of nutritional information, as well.
Blair...How are you feeling?
Kat...I watched most of the Super Bowl game....I was so happy with the outcome. I always vote for the under dog! Time for Brady to share!! It was a great game!!
I'm still a little achy this morning...but, not as bad as yesterday.
Have a great day, ladies!
Hope
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Hi Nonahope - I’m not feeling great, but trying to force myself to move. Right now washing a couple of loads of clothes, got dressed (which is an accomplishment in itself), and still taking the what I call - masking back pain pills. I guess when I run out, the result will be more back pain - I don’t know how to tell otherwise, but still feel those muscles as stiff right now especially when I stand for long. The pills do allow me to move better, but they cause some grogginess too. So I’m tired and very lazy. Still some late day ankle swelling, low grade fever, but my watery eyes and nose have improved. The weather is gloomy and not helping my mood.
Thanks for the cook book suggestion. One thing that’s hard being single is trying to cook fresh foods for one person. I end up throwing away so much spinach, lettuce, celery type fresh foods. Tomatoes are always eaten, my mandarins and fruits are not so wasted. Ripe bananas are turned into muffins usually, but if too lazy to fix that, they get thrown out. A quart of milk is hard for me to use up too. Much better to fix for two people. I hate wasting food, but they just don’t sell it in itty bitty amounts.
I was glad the Eagles won, although really not an NFL fan. I was only choosing them because of two boys in the team who went to my college. One though in the Patriots. So Eagles it was and they were due to win.My sister and I were texting back and forth about the game - we were being silly, so I had some fun. I was too tired to watch full game and went to bed by 3rd quarter.
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Blair...You sound much better!! I'm glad you are forcing yourself to move. I know I am never as achy when I make it a point to be up and about and not sitting all day.
I know what you mean with being single and cooking for one. I usually fix meals that serve 3-4 and freeze leftovers. I usually only cook a big meal 3x a week. I have the leftovers on the other days. I eat a salad every day for lunch (and sometimes for dinner), so my produce doesn't usually get thrown out. I'm not a big milk drinker so I buy organic milk...it lasts a long time. I've been trying to buy organic foods as much as possible. I always buy green bananas, and only buy 3 at a time. I hate mushy bananas. It is a necessary challenge to cook healthy meals for one. I put a turkey breast roast in my slow cooker this morning. I will have lots of leftovers to freeze for later.
I'm glad you had fun with your sister texting about the game. It was a super game. Sometimes Super Bowl games end up being blow-outs and not fun to watch.
Keep us posted on your progress.
Hope
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Hello everyone.
Meow you look so stylish in your scarf and necklace. Well done girl! So interesting about genetic testing. I hope you'll share what you find out.
Orangedaisy I hope you get the last of the nasty drugs out of your system and feel better soon. I think it takes longer than we think it will, but we'll get there.
rljes Gosh what a rough MRI. I feel so bad for you having to go through something like that.
Nonahope and Mindy Another great cookbook is "The Cancer Fighting Kitchen" by Rebecca Katz. She also has authored a great soup cookbook. I think it's called "Clean Soups"
Blair Please don't get down on yourself. Cancer is bad enough, please don't let it turn into self dislike. You don't deserve that, no one does. Glad you are up and moving about and enjoying some fun communication.
Magari It sounds like you had some fun events this weekend. I bet it helped you physically and mentally to stay socially engaged. And like me you are a walker, yeah!
My fourth infusion went well yesterday. My blood work was great, which was a relief to me as I've had problems in past cycles with my liver values. I think eating well has really helped. Right now I feel pretty well, but 24 hours after my nuelasta pod goes off and the steroids leave my body I have a very rough few days. I'm not looking forward to it at all. But the good news is that this was my last infusion! I will be going on to the next phase, radiation. A friend said there are three phases to cancer treatment: cut, poison and burn. Kinda of a blunt and somewhat funny way to put it. Whatever it's called I'm happy to be soon going on to the third and hopefully, forever, last phase. Everyone here made my journey easier. I'm so thankful to all of you.
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