Chemo starting April 2018
Comments
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Engine I just finished my last chemo last Thursday. I was on a regiment of every two weeks for 4 ACS and 4 taxel. Yes he has been around after most of my treatments. He missed a couple of the AC treatments because he had to be out of town but for the most part yes he has been. I think he just feels that now that I'm done with chemo I should look at possibly doing some fun things for the summer. I can honestly look at him today and tell him I don't have any desire to be around all those people even if it is 4 weeks from now. I think that is where his frustration is kicking in. We looked at doing a vacation at the end of August which gives me a good 2 months after chemo. However my oncologist is not wanting me to wait 8 weeks out to start radiation. He told me I could wait 6 tops. We've been dealing with this since December and I think he's just ready to go have some fun. Me on the other hand I'm a hermit, dealing with depression, and have no desire to get out into public right now. I just want to get all this done and behind me before I get back out there. I don't know if that's the right attitude to have or not.
Thank you for sharing your thoughts. I have said before and I will say it again. Your wife has been blessed by a wonderful man of god.
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Dear Life1963,
Thanks so much. I had no idea when we got married 34 years ago that we'd have to deal with cancer three times, but it was for better or for worse, right
Seriously, the good times far outnumber the bad. I am only familiar with my wife's chemo protocol (TC), so I'm not sure if your protocol reduces your blood counts to the point that you become very tired and susceptible to infections. I assume it does. If so, and your last chemo was a week ago, your counts would still be down, so it's not wise to be around large crowds right now.
I remember you mentioning a while back about your radiation vis-a-vis your planned vacation. I think the vacation would be ok that far out from your chemo. I think this could have more to do with how you are doing emotionally. Believe me, I know about that. I've had an anxiety disorder for many years. Does your oncology office have a social worker? Ours does at Kaiser. They are there to let you talk things out. They are there because what you are feeling is not wrong or unusual. In any case, I'd suggest starting with speaking about this with your oncologist or a nurse coordinator there and see what they say. They may help put your mind at ease. I pray that this helps.
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Life—you have to listen to your body. If it’s telling you to rest then YOU HAVE TO REST. You might frame it to your boyfriend that the more you take care of yourself now, the quicker you will bounce back. I firmly believe that. I am such an independent/never complain type person but I actually sent my husband to the grocery store the other night. I needed one thing, could have gone myself, but thought dang it I just don’t feel like doing this so off he went. This is the one time of your life you need to think of yoursekf first. This is your health we’re talking about. As to the mental part, keep in mind this is temporary. Make plans to go to Sturgis next year
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Maggie2, thanks re the BMX info. I'll look at the exchange thread for more info.
Engine - no Smooth move chugging if your wife threw up! Hoping Miralax (starting day before) will do the trick this time.
Life, you do sound depressed and getting out might help. Is there no compromise? Example: there's no way I could be at a concert for 5 hours, but I could go for 1 or 2 (especially if he brought a camping chair or something I could sit on). Would he agree to doing something, but for a shorter time frame or is all or nothing? I wouldn't do anything in a crowd right now (except, maybe outdoors), even though you're done with chemo. Your blood counts are still low, I'm sure. Also, there are plenty of threads that talk about people being surprised because their fatigue was worse after chemo. It's cumulative - it's going to take some time to get out of your system. I hear radiation really does a number on people and makes them more tired that chemo and for a few months after it's done, too. There's no way I could even think about Sturgis, but I DO go out to eat with hubby and do things with friends (movie night at a friend's, dinner out at a friend's, etc). For example: we went to a friend, they had pizza delivered, we sat and watched Netflix movies with them. You're getting out, but avoiding big crowds. If you don't like what they have to eat, don't eat it, bring your own. I just turned down an indoor concert last week, due to germs. I agree with Engine, talking to someone might help. I also know of some women who have temporarily gone on anti-anxiety meds or anti-depressants. We're fighting a battle her - it's bound to take a mental toll, as well as a physical one. What about a different, short vacation than Sturgis in August - just you and he going to a cabin in the mountains or going to the beach - somewhere you don't have to be super-active and face a lot of people?
Urdrago, no one has mentioned a shot for rbc, just a B12 shot for energy. I guess it's because my wbc are fine. I'll ask next Wed when I go for #4.Ugh, I had a sleepless night due to the steroids, I guess. Going to go clean something while I have the energy, lol.0 -
Life, I agree with Engine. If you don’t feel like going anywhere, you shouldn’t be. This is a very difficult time in your life and you should be looking after number one. Our caregivers have it very tough as well, but we are the ones who are actually having poison pumped into our bodies. We are the ones who hurt the most. So this is the time when you just have to sit your boyfriend down and tell him that the risk for you to go anywhere is just too high. Plus, what’s the point of going if you won’t enjoy it? Especially if it’s such a long event. On the other hand, it’s possible that he thinks it will do you good to do something ‘normal’. You just have to follow your instincts on that one. Whatever you decide, though, explain your reasons to him in a non-confrontation manner. He’s been going through this nightmare vicariously, he is tired and stressed out as well, and he might think he deserves the break. All of this is true, but if you don’t feel up to going, you shouldn’t be pressured into it. Maybe you can promise him a special vacation after everything is over? Have some quality time with him instead. And if it’s ok with you, let him go to Sturgis with his friends. Our caregivers need time away from us sometimes.
Frog, stay strong! Hope you feel better soon.
Regarding the shows, I was recommended Weeds on Netflix, but haven’t watched it yet. People are saying it’s really funny.
Urdrago, for mouth sores I use baking soda/salt rinse. Half a teasooon of soda, half of teaspoon of salt in hot water. Wait for it to cool down and use as often as you like, but definitely after every meal, snack and before bed. Just got the edibles yesterday. But by this time my nausea has subsided. Will tell you how they are working next Friday after my last AC.
Engine, may God bless you, you are a gem! Does your wife want to try Colace? It works great for me. I start taking 3 pills a day the day of chemo and continue until I take Zofran. 6 days, generally. Both chemo regimen and Zofran can cause constipation, my oncologist told me, so we are getting a double whammy here. Also, roasted beets with olive oil will help as well. Ukrainian remedy. I roast some beets, then cut them up, add avocado, tomato, and pour some olive oil on top. Add some salt as well. It’s a delicious side dish! Be prepared to pee and poop purple after it, though, because of the beets’ intense color.
GAWarrior, I have the tissue expanders right now. My surgeon said the cosmetic result will be better with them, so I agreed. They are a pain in the butt sometimes, I still sleep in the recliner because I am a side sleeper, and it’s uncomfortable to sleep on my sides for the whole night. But most of the time I don’t notice them. Moreover, nobody else notices they are not real boobs either! My PS says that for some people the second implant exchange is never needed. But he assured me that the exchange surgery is a very simple procedure. It’s outpatient, and my friends who had it felt great on day three after it. I decided to take my chances. My friend had a DIEP flap and I really don’t like the result. Plus, there were complications in the donor site.
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Hi guys,
InnaB: The beet recipe sounds really good. She loves beets. Thanks!
GA: I think she is going with Miralax starting the day of chemo, not the day after.
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LIFE, i had to chime in in your delema re getting out and socializing, and Sturgis. You can only do what you can do, not wise to push beyond your energy or travel limits. The Sturgis thing resonates with me, in a big way. Went last year. We rented a bike, as living in N.Y., and my S.O. has one leg, riding with a prosthesis that far is not an option. This year we were going to trailer his ( which he has been building for months) and mine . So we could both ride our own. It's a major undertaking, wd really wanted to go.
Not do-able. We stopped talking about it on April 12, when I found out chemo and radiation were coming after 3 surgeries. So, yeah. If you have gone in the past, you have an idea of what you would be involved in. Big differences lie in factoring in where you camp or stay. Also the walking. The noise, and the available food. If you stay in one of the calmer camp grounds, and didn't venture far, it may be okay for you. But riding while fighting diahrrea or bone pain, is not fun. Just think it through. I have not gone very far this year, sometimes Wal-Mart is barely a something I want to manage. You and he need to have a realistic heart to heart. Depending on the location proximity maybe a day or two for just him? Trust me, i get it. It stinks. It hurts. My Harley is getting cobwebs and I hate it, but safety first.
Last year we rode Needles Highway, and all the crazy curved mountainous switchbacks snd rode past buffalo I could touch. You must be at the top of your game, and then some to ride or even passenger in almost half a million motorcycles of every type, skill level, and descriptions. Saw accidents almost daily there and on the way there. It was thrilling, yes, but risk factors exist and you dont want to start the trip with built in ones against you. Iv had a cloud over my head with the date rapidly approaching, but other smaller jaunts seem more wise. Just my 2 cents.
I hope for next year for Sturgis. I hope the same for you. Safety and health first. Planning for a fun time also helps keep your spirits up.
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Back from a short family visit so I probably won't be able to catch up on all the posts.
LIFE- I agree with others there has to be some baby steps following chemo. Yes you are finished with it but that doesn't mean the chemo isn't finished with you. It sticks around for quite awhile. That's one reason they don't stack radiation so closely to chemo. Hopefully you and your boyfriend can come to some type of compromise. We needed to visit my husbands parents because his mom had had a bad fall and surgery. Compromise we traveled but my daughter and I stayed at hotel near their house so that when I got tired or wasn't feeling well I could leave and go there to rest.
Amazon show recommendation - The Americans. I can't believe I'm just now coming to this show. And don't ask me how fast I'm flying through it. I blame that on feeling really crappy this round.
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Thank you everyone for all your suggestions and concerns. It has taken me awhile to admit to myself that I am depressed. I have probably cried more in the last 6 months then I have ever cried in my whole 54 years of life. I keep telling myself I'll just get through all this. It is just my hormones working overtime or lack of and I'll be fine. The crazy part is I don't know why? I'm still very capable of living my life. Maybe not being a big social butterfly but still can live my life. There are others out there dealing with way more than I could imagine . Perhaps you are right. I need to reach out and get some help to work through all this overabundance of emotions I'm dealing with. I don't really like to take pills of any sort because of possible reactions. It is a struggle for me. I guess sometimes you have to do what you have to do.
I sat down last night and had a long talk with my BF. I thanked him for being here for me. I also told him I understood if this was also taking a toll on him as well. I reassured him that if he wanted to go to Sturgis and/or the four wheeling week camping trip that we already planned with everyone else in August that he should go. He told me that he was concerned about me. He feels bad that the whole summer was going by and that I was not getting out to enjoy some of it. I told him that I needed to take baby steps. I explained to him that not only am I dealing with physical side effects of this I also am dealing with the emotional side as well. It is very hard to look in the mirror nd not even recognize your own self. I need to get comfortable in my own skin again and feel better physically before I willing or ready to step out my comfort zone. I also admitted to him that I was depressed and that I was aware that I needed to do something about that as well.
Thank you again everyone for reaching out to me during this time when you are all going through so much of your own. Each one of us have our own personal battles that we are fighting as well as this horrible disease. I have truly been blessed to have such wonderful people, that have never even met me, have such kind and encouraging words of wisdom.
Mean while I have a whole list of amazons shows to check out and possibly some personal journaling to do.
Hope you all are having a good weekend!
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Dear Life1963,
God bless you.
I'm glad you had a talk with your boyfriend. Talking issues out is a very important step. So many relationships are ruined because of a lack of communication. Mine nearly was a several years ago for that very reason. I pray that he will be supportive though this. It sounds like you are taking all the right steps. You have to believe that things will get better. It takes time to heal and people need to understand that.
Please know that we are all here for you. This is an amazing support group.
Blessings,
-Larry
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LIFE: ♥️
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LIFE. Glad everything is working out. Im with Engine and hope that u have a peaceful week..
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Hi, everyone, I hope it's as good a week as possible. I ended up sleeping 10 hours last night, and honestly, that was what I needed!
For anyone interested, I did go ahead and start a "Radiation in August 2018" group. (I hope I did it right--I haven't been notified I messed up, lol). I know some of us might be transitioning there. I see my MO this week, and I'm going to ask about the Persephone trial. I did some further research if anyone is interested (DFS, percentage of physicians who think they will change their recommendations, etc.).
Hang in there, y'all!
Dee
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hmmm. Loving the Netflix " longmire"... I'm already at S1 ep 9.. makes me want to live on a ranch without the crazy!
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Thank you lovely ladies for your kind words and concern. My voice is back and am almost done with the cold. And most importantly I do not feel as low as I was feeling last week.
Taxol 7 is underway. 15 more minutes. I see my MO today.
I went out with friends yesterday. I am getting quite good at drawing eyebrows. So, I put some effort, eyebrows, lipstick, the worksand guess what I have new pictures where I look quite good as well.
Life, I am glad you got it sorted with your SO.
Hugs to everyone.
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Hoping for a peaceful week. My wife's 3rd round is Wednesday.
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Dee--I hope to be joining that rads group. My MO's office called my RO's office a week and a half ago to get things going but someone wrote down that my last Taxol is 8/21 rather than 8/2 and they still haven't sorted that out. I don't have any appts with my RO's office yet but will call <again> today. I'm hoping to start 8/20 and be finished mid-September.
Urdrago--I think women of a certain age all kind of fall for Longmire. ;-)
Frog--I hear ya on the cold. I've had a cough for several weeks and it is bumming me out. I could use a good night of sleep. What are you doing for eyelashes? I still have lashes/brows, although the hair down below is finally going. Post a pic!! And congrats on #7--do you have five more to go?
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I am going to the medical oncologist today to decide which chemotherapy I elect to take . I was given a choice of AC every two weeks Four times and Taxol weekly for 12 weeks. The second option is TC 4 times every three weeks. I have a tumor size of 1.4 with a grade of two. I am ER positive and H ER to negative. I was positive in one node. I am very concerned about the first option. We have many heart issues in our family, and I do not want to have a heart issue as a side effect. Has anyone had to make this type of choice, and if so, what did you decide? Any insight into this decision would be helpful. Thank you
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Molly316
I did not have as choice. I did A/C (4) every other week followed by DD Taxel (4) every other week. My MO said that to keep your heart strong and energy level up to do some kind of cardio like walking or riding a stationary bike 30 mins a day to the best of your tolarence. Even if you have to break it up into 10 mins or 15.
I did really good on keeping up with that regiment until my second taxel. Taxel seem to zap my energy levels some after each treatment.
There are others out here that have done 4 A/C and are currently working through 12 taxel every week.
Best of luck with your decision and your treatments!
Have a nice day!
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Engine. Prayers for you and your wife that all goes well for her this week with minimal SE's!
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Hi, Molly,
Nope, no choices here, either. However, I personally would've questioned (for me only) the use of different chemo in my case. I did a lot of research beforehand, and the standard of care for my particular cancer type was what I received. Could you ask what your MO recommends for your specific type?
Dee
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Hi Molly: No choice for us either. The doctor said TC, 6x, once every three weeks.
Thanks, Life1963, I hope this round goes easily for us. We're on a first name basis with the ER/Urgent Care staff and that's not good.
I think it will be ok. The infection is long gone and my wife is being more proactive about avoiding constipation this time. 0 -
Hi Molly. I got your 2nd choice, although it was what was singularly offered. I was concerned regarding heart issues, as I have been on heart meds for years and have had heart surgery myself. My oncologist told me the TC was not going to affect or exacerbate heart issues or cause any. I just finished my 4th TC, with no heart issues. Would going to another onco for a 2nd opinion help you? I agree that some cardio helps immensely. Best to you.
Deborah
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since finishing my last chemo, TC, my vision has been quite blurry, and my eyes water constantly. I look like I'm crying. I sure hope this passes, has any one else had similar? Today I felt I shouldnt even be driving, it was really bad. Idk.
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Hi DJT,
My wife has had very watery eyes with her TC. She also has a constant post-nasal drip.
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InnaB, thanks so much for your input re: tissue expanders. I'm a side sleeper, too, but I'll do what I need to do for a good result. I'm not interested in the flap reconstructions - they just sound so much more complicated than I want.
Life, so glad that you and your BF talked it out! I thought he was probably trying to look out for you and see that you had some fun this summer. People just don't understand how much of a toll this takes on us. I've known several people with cancer and never had a clue until I've been dealing with it myself.
Duffy, sorry you aren't feeling well this round - hoping you're better now.
Frog, so happy to hear you are feeling better! Yay for finishing T#7! Hoping for minimal SEs for you.
Engine, good luck to your wife on Wed. Get that miralax in her.
Molly, I wasn't given a choice in treatment either, due to my triple negative status. I did 4 DD AC (every 2 weeks) and am working my way through 12 Taxol now. Frankly, none of the chemo drugs are good for the heart. Also, radiation can increase the chance of cardiomyopathy, heart disease, and heart attack (https://www.mayoclinic.org/diseases-conditions/can...). What other choice do we have, though? Before they started my chemo, I had to have an echocardiogram. Maybe going through the results of yours with your MO would help you made the best decision in your case? Also, I try to walk or do a slow jog a couple of times a week to keep my heart strong during chemo. It's tough, though - like LIFE mentioned,Taxol is zapping my strength. Best of luck with your decision.
Djt, I've had watery eyes since AC #2. The MO put me on steroid eye drops. They help a lot. I know you're done with chemo, but I take them the day before through the third day after the infusion. Maybe something like that would help you? I also have a hard time transitioning from close up to distance vision - it takes a few minutes for my eyes to adjust, but they are very blurry until they do. Like, Engine's wife, I have bad post nasal drip, too. It's a super good thing I wear a mask at work because my nose just opens up like a faucet at the drop of a hat, lol.
I'm looking forward to T #4 on Wed (1/3 through T after that one, woot!). Urdrago, I think you're getting #6 on Wed? Good luck!
Have a good week, everyone.
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I will be getting taxol 6 of 12 on thursday and a little bit anxiety about seeing doctors for next step..still waiting..
Ingerp- yep Im ready to move out to Wyoming..lol.
Engine- prayers ur way for no SE's at treatment this week.
Frog -so happy ur chipper.. Make does make me feel a bit better with color on my face. The other item Ive gotten more of is, Earrings . They add a special touch of something else near my face..Your almost done and thru infusions. You ju sds t completed #7 How are u feeling??
Wish you no SE's Gawarrior.. and yes i had teary eyes but that has stopped. Not sure if its bcuz i had a break between treatments.
Molly- I believe I got standard care for my diagnosis as many with TNBC have the same treatment as me.
Curious if anyone has switched from Constipation to diarrhea during taxol treatment. I stopped using prunes and adding bananas and rice to my diet..but seriously who would of thought..
Sending good vibes to everyone, have a great week and make someone smile!
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thanks Engine and GAW on the info on eyes, i just hope it goes away soon. I dont have post nasal drip, more like dried out nasal passages. But good to know there are drops if it continues, it's like I can't focus my eyes, hate that.
Wow, on another note, was having a great night. Pizza and movie with my grandson, phone rings, i see Drs. Office number, so grab it up, wish I didn't. Nurse navigation...".do i need a counselor, a support group.? Is there anything I ca n do"
I knows it's their job, and all ..but what I need is to forget this filth for a little bit!,, to feel like a normal human being, to be GRANDMA again, not a patient, not a sick person!,, she ruined my mood.
Sorry, rant ranted.
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DJT. Ruining pizza night! Grrrrrr
Also my eyes watered all the time on A/C and Taxel. I am constantly having to take off my glasses and clean them. Not that it helps any since my eye sight is really blurry right now as well.
Still dealing with the exhaustion and tingling and numbness from Tax as well. The other night I was walking out of the bathroom barefoot, which they told me not to walk around barefoot, now I know why, all of a sudden I felt like I was walking on clouds and could not feel the ground underneath my feet. Darn near fell flat on my face before I got back into my bed. Craziness!
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Taxol 7 day 2.
I am feeling much much better. I have a very hoarse voice right now which the Onco nurses have said is very sultry and sexy (not).
Till now none of the ugly SEs have reared their ugly head, except for the dry mouth. I have packed the coming days with lots of activities so that it goes by faster, also, its school holidays, not much choice there. So the activities will involve park, library then park again.
Life, I gasped when I read that. I have read of this with Taxol SEs.
Urdrago, I have always admired ladies who have this really short do and wear dangling big earings. Never had the courage to wear my hair that short. Well, now I can..... in a few months I mean.
Ingerp, I still have some eyelashes. I tried mascara with it, so far so good. Then I got a bit more ambitious and put mascara on my very sparse lower lid. And it looked like those daddy long legs. So I am sticking with mascara on my upper lids for now. I am not very confident with the fake lashes yet. I am planning to go to the look good feel better classes. I have heard they are quite good.
One good thing about this no hair thing, I am so smooth...ha ha ha i even teased my friends about it. I can wear whatever dress I want without scheduling a waxing. There is no planning required.
Wishing all of you minimal SEs
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