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Starting Chemo June 2017

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Comments

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    HapB, You are also older than I am, I believe, based on one of your posts. I am sure being somewhat younger is helpful (and relatively healthy otherwise). This is NOT an easy journey. People keep saying I am so strong. Well, you have to be! You dig deep to find strength you didn't know you have. Honestly, I thought I had left it all caring for and losing my first husband. I pray that you can find what you need to do what you must. Are there any organizations that could help you with driving you to appointments/meal delivery etc? I pray you can find all that you need to endure the course ahead.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    I think the long term side effects of any treatment we get whether it's the drug to counter act the side effects or the chemo drugs themselves can potentially have long lasting effects many years down the road. They don't tell you this at the time but if you do some research you'll find it does affect the immune system for the rest of our lives.

    My friend has had shingles twice now since she had chemo over 35 years ago. Did she get it because of chemo? I don't think there's enough research being done on long term side effects to know if that's the reason. When you read up about shingles they say chemo treatments can lower your resistance.

    Life seems to be so much about how we balance it.

    Kim Possible: This time around I didn't suck on any candy at at all. Too busy talking to the nurse. (DH had his head phones on and was listening to the radio.) But yes my taste buds this time are a bit off. Not sure if if no candy or mints makes the difference. During the first time I definitely felt a weird taste during treatment but not this time so I didn't feel I needed the candy. Will have to go back to the candy next time, see if that makes the difference.

    HapB: I take a lot of your wisdom to heart. I listen because you've been through this before. Thank you for you input. There where times during my first round that I really didn't think I could make it for five more. But then I started to feel a bit better and decided no matter what I can do this. Each of us is different in how we find the strength to move on. I pray that you find yours. Of the two things in life that I've gone through, chemo is way easier than losing a husband. Emotional scars are much harder to heal for me than the physical ones. One thing I learned from it, is that I'm more loved than I imagined or thought I was. Learning to love ourselves is the hardest.

    Heart

  • she1212
    she1212 Member Posts: 12
    edited July 2017

    such valuable words can't express this enough thank you for sharing this....


    One thing I learned from it, is that I'm more loved than I imagined or thought I was. Learning to love ourselves is the hardest.

  • Tpralph
    Tpralph Member Posts: 281
    edited July 2017

    hapb- are you seeing a social worker to help deal with the stress of all this? Perhaps a support group in your area? 

    Re: dying alone, as with BC you never know what life has in store for you, so don't rule it out . Ive known so many people who thought that and they did not die alone. Please don't give up hope.  Thinking of you.

    Re: neulasta shots, mine cost 2800.00 Canadian each time and I'll be giving myself total of 8 of them. (7 more to go) Hate the muscle aches on day 3.... Next chemo is Thursday this week and wondering how the SE of that will be this time. not too bad chemo #1 just some queasiness on days 2-3, a bit of fatigue and brain fuzziness until after day 6.

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    Just got back from getting fluids .... feel better.. Starting with this round I go in the Monday after Chemo Friday and get fluids..

    Last night was a booger ... felt like my bones where made out of glass.. blah... we feeling "out of it" last night and today...
    after getting liter of fluids at the Infusion clinic I feel better.. I hope it last...

    I'm having more bone pain this time around , from my knees down ache ... I'm taking Claritin... and Tylenol it helps.. I felt so bad last night that I couldn't take my walk :( . Walking helps a lot with the bone pain

    Also having more of a "sinus" headachy headache this time around ...

    In some ways I'm better this time around... smells haven't really gotten to me yet.. oh but they will lol... Eating has been really good .. I'm hungry.!

    Just can't find something I really want to eat.... nausea is under control... learned the first thing in the AM I eat crackers... if I need a little something on my tummy it helps with the nausea.. plus the meds..
    Found out I can't take Phenergan ( sp?) .. it makes me crazy .... so I'm sticking with the Zofran.

    Hugs to everyone .....

  • Wendeez414
    Wendeez414 Member Posts: 40
    edited July 2017

    Hooray!! I'm so happy AC is behind you! I'm only on my second one but you made it and so will I 😊! Glad your mom will be sitting in for your husband. My husband is often out of town too but sometimes that's easier for me. Get some good rest!

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    Thanks Wendeez! I was feeling great up until about noon today. Went up to my school to get.a book, but came home to nap. I did make dinner with my mom's help. Then I was wiped out. I've discovered the Great British Bake Off on Netflix. I have a feeing there's a good amount of binge watching in my future tomorrow.

    Besides the fatigue, the worst thing I'm encountering at the moment is extreme hunger, but nothing sounding or tasting good. Dinner was stir fry vieggies with rice noodles and it was so horribly bland. I ate it because I was hungry, but now I'm starving again, but to tired to eat. It's all a vicious cycle.

  • ml1209
    ml1209 Member Posts: 153
    edited July 2017

    DeniseT - I know 100 Oaks :). Love to go to Calypso Cafe close by there. Yes .... walking and being up moving helped my bone pain as well ... also a heating pad, and epsom salts warm bath. Prayers you feel better soon!

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    Denise, Hang in there! Smells...yep...but we have to eat. I think we are all so similar in so many ways with our SEs. We are making it, though. Yes we are!

    MsLin, "Vicious cycle" describes it perfectly. Yes, we know we have to eat and it is often bland that first week, but oh how I celebrate on the rebound week. :) I feel like I finally have my old tongue back (almost).

    I am trying acupuncture today. My bone pain was more last week, but I hear it also helps with hot flashes, which are now a part of me. I have never done it. Willing to try most anything once. I have done dry needling for my myofascial pain syndrome, which has all but disappeared...lol I guess Cancer trumps MPS.

    I am curious after A&C with Neulasta, how Taxol will be since it is a weekly chemo with no Neulasta (I believe none as per my first visit with my ONC it was only for A&C)? Wondering if there will be no rebound weeks (since weekly) and therefore no return to tastes/energy/feeling good. Don't want to look that far ahead, nor be negative (no...no...no) though it starts in exactly one month. I have also heard two schools of thought that Taxol is easier and that it is not. It will be interested to compare with others here on it. One treatment at a time!

    Have a great day, strong and beautiful ladies!

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    ML1209 love Calypsos.. also Baja Burrito... oh man.. I just made myself hungry lol...

    Thank you for the prayers... I need all I can get ... feeling so so this morning ...

    Hugs

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    Thank you Kim.. we will get through this... we just have "lean in " ...
    that's my mantra " lean in Denise.. lean in "

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    Kim - I did acupuncture for 3 years during infertility treatment and loved it. I looked forward to it each time. I kept it in mind as a relaxing moment for myself. Good luck with it. The hot flashes are the worst. I had a hysterectomy 5 years ago so no ovaries or breasts are making this summer horrible.

    I have done a little reading in the Chemo May 2017 group and the weekly Taxol group to see what I'm up against. My MO says Taxol is easier with the nausea, but I also hear that the fatigue side effects are more cumulative. I'll be DD Taxol with neulasta so it'll be interesting to see the difference between that and those doing the weekly

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    Kim... I swear by acupuncture .. my husband's best friend is ours... and he has done amazing things or me and my husband with other health relateded issues..

  • LTWJ
    LTWJ Member Posts: 118
    edited July 2017

    Does anyone else have a prescription happy oncologist? I must have 30 prescriptions of which I take 2. The zofran works for about 30 min so I don't like to take it. The other drug promethazine made me so dizzy I couldn't take it. Now my dr has given me olanzapine to take for 4 days after chemo to help with nausea. If food actually tasted good or even just decent I wouldn't be so nauseous. I'm doing much better this week forcing myself to eat even though it tastes bad. I had lost 15 lbs but I'm slowly putting some back on. Things that tasted good after the first round taste bad now so it's a struggle. I taketne steroids just after chemo too.

    I actually hate to take any meds ( all my life have been this way and I rarely even fill my prescriptions). I was taking something for High bp but after my first chemo round my bp was 80/42 so they told me to stop them.

    I also take lomotil for tne diarrhea since the over the counter wasn't controlling it. I only take 1 pill a day and I get a good 12 hours relief.

    I'm terrified of all these drugs and worry about interactions. Last night was my first bad night of sleep but hopefully that doesn't happen again. I usually sleep like I'm in a coma.

    I am great full for my good third week, getting my house clean and doing a few crafts too. On Friday I get #3 of 6 :)

  • CurlyN
    CurlyN Member Posts: 18
    edited July 2017

    Yay for MsLin finishing AC!! My MO was overall pretty positive about the Taxol SEs for me, so I'm remaining hopeful those 12 weeks will be tolerable.

    Good to read everyone's stories and see how much we have in common. Had my 2nd round of DD AC this morning. All the nurses acted very impressed with how I was handling everything so I will take that as a win. Hair is starting to fall out pretty good now - last week I went with a good friend to a wig shop and had so much fun. Picked out the cutest wig ever - nothing at all like my normal hair. Excited to try a fun style for a while, just hope my toddler doesn't freak out too much at mama's new look.

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    I'm only taking zofran ...it seems to be controlling the nausea the other promethazine makes me crazy.... too out of it... so I stopped taking it.. My MO said if I needed something else she would give it to me..
    I find if I eat something .. anything.. a couple of crackers.. every couple of hours it helps me with the nausea ..

    The MO has me on Opermezole ( sp?) for my stomach... lomotil if I needed ..... right now I'm ok... the otc Imodium worked really good this time around..
    Claritin ...I think that's about it ....

    I'm also on BP meds... but my bp has been ok... it was a little high yesterday and my pulse rate was way up.. but I think its because I was dehydrated...

    Hang in there!

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    My current meds are Claritin 1 day before and 4ish days after infusion. Effexor and Zyrtec (my normal daily meds), Compazine, Kytril and Ativan (lorazepam) for nausea. Although I only take the Ativan at night and compazine when I need it. I take Colace and senna to make sure I still "go." That's about it.

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    Acupuncture was interesting. Mind you, all the pain I had last week hasn't bothered me this week when I made the appointment. But she talked about areas like in the palm of my hands (the fatty part below the thumb) that I should massage and is good for breast cancer. She stuck me in between my breasts to help with hot flashes among other places. I feel really good. Wish she could live with us the next few months just to get through. Might could throw all the Rxs out the window that I feel obligated to take to stave off many SEs.

    Curly, Good for YOU for picking out something fun to make the best of a challenging situation. I haven't worn my wig once, but I am wearing all my hats like crazy. My friends say my other hairless friends would have hat envy. (They are not hairless.)

    Denise, Interesting. I have not had NEARLY the water intake I KNOW I should. The acupuncturist checked my pulses in a unique way. She said, "I think you have some kidney issues going on." She's right. I've only had about 8 oz of water today. I am just a person who rarely drank before this. Then I got really hydrated for round 1 of chemo, and then I was gagging on the thought of water by round 2. So, she called it. We are picnicking in the park later with a free outdoor concert, and I am picking up a large lemonade at Chick-fil-A. I know that's not enough for the day, but I do the best I can. I guess if next week is as bad as round 2, I may suggest IV fluids.

    LTWJ, Not a fan of meds either. Told DH that I will definitely want to find a fru-fru detox/wellness retreat when all this is behind me. Perhaps in the Poconos or Vermont. I'm worth it! ;)

    MsLin, Knock wood, I haven't been nauseous...a tad queasy, but then I just eat - even if just PB crackers. So, I cannot complain about that at all, but I have been religious to the Zofran. They did prescribe me compazine but I have yet to take that. I also take a Rx Prilosec (per their direction) every morning when I wake. Maybe that is what has settled the stomach for the day. Bathroom schedule except for the first few days after chemo 1 has been regular. Not constipated and no diarrhea, so I am just thankful that I am only dealing with fatigue on certain days and taste issues, mostly.

    I recommend we walk, walk, walk to stave off fatigue. I think keeping my body moving on the days I can has helped.

    Denise, I have a s-i-l and family who live in Franklin, TN. LOVE it there!

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    Kim.. that's cool! I live about 20 mins from Franklin almost to downtown Nashville.. if you every get a chance to come down to see your family ...just yell.. I will buy you a cup of coffee.. :)


  • LTWJ
    LTWJ Member Posts: 118
    edited July 2017

    kimpossible18 I love the idea of a retreat! We had to cancel our vacation to Colorado because of this and are suffering in this TX heat. DH and I walk afte 9:30 pm when it's cooler. I'll need to start looking for a place togo. I'm already making a list of first foods for when my taste buds return!!!

  • susie_2017
    susie_2017 Member Posts: 142
    edited July 2017

    Hello to all of you! Glad to read some of you are feeling good and being positive. I've had an awesome couple of days and not looking forward to getting chemo on Friday and starting back at day one. I'm eating like crazy, some foods tastes weird to me. I'm probably not drinking enough water either but I feel I always have a liquid in my hand therefore that counts! Today I made the big decision and shaved off what little hair i had left! Not one tear at this point, probably didn't have any tears left after seeing it fall out in clumps over the weekend. I used an electric clipper to get the hair off but there is a little stubble here and there. Should I use a razor to get remaining off? I don't know if it will eventually fall out on it's own. But where the hair fell out it's smooth and where I shaved it's black stubble.

  • Tpralph
    Tpralph Member Posts: 281
    edited July 2017

    Susie, I wouldn't use a razor to my head as you are running the risk of folliculitis- infection of follicle glands. I'm at day 13 and today I notice it is starting to come out every time I run my hands through my hair. planning on getting my dh to take the clippers to it - down to about 1 inch. 

    Chemo is delayed this week as have an abdominal infection from my diep surgery. ugh. was to be #2 and was all geared up for it. so my mo said maybe next week. having dd ac and t. Anyone know if it affects outcome? WBC were good at 8.6. 

    Also asked about the oncotype, seems they only do it for those patients who are debating the chemo tx. I had told them that I wanted to do everything I can to prevent spread and recurrence. Didn't know they wouldn't do tests and just throw the book at me like that. 

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    Susie - I took my hair down to nothing with my husband's electric shaver. I've given myself a few "hair cuts" in the past few weeks. The nurse did warn me about folliculitis and I watch it closely. The bits that are there still grow and it makes my head feel like the hook part of Velcro and I hate it

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    Agreed that there are a few stubbly parts, so we didn't razor cut those to be safe. Susie, You sounded TOUGH through it. Good for you! You will be glad you did it to avoid all the mess and reminders daily of what is going on. I also agree I have felt so good this week that gearing up for round 3 on Friday makes me want to freeze time. Before we know it, this will ALL be behind us...forever.

    LTWJ, I hope you can find somewhere to get away, even if a short road trip. I am turning 50 on 8/18. I had a 10-day trip planned to Costa Rica. I had to cancel, of course, as I will be in the chemo chair! (barring no setbacks). Can you imagine comparing notes one day to people you just meet on how you celebrated your 50th?! I also had a cruise in Sept/Dec, but I canceled both because in Sept I will still be on chemo and I was unsure of Dec, since I need more lymph nodes removed. (I am in the travel biz, so I have had plenty of great opps, but I do love my getaways!!) I am positive I will have an awesome trip next year, wherever it may be. An African safari has been on my bucket list, so maybe I will do that instead to celebrate what I just got through! We have planned a road trip to Traverse City, MI, which people here say is just lovely. It's just a 6-hour drive, because I didn't want to fly during chemo, and well, the private jet is not an option. ;)

    tpralph, I am still a bit perplexed why they would do Oncotype on me. I think it boiled down to the fact that 6/7 nodes were cancerous and I have no children. But I do have one blood niece, so for me I wish I had persisted. Maybe since I don't have a score, I don't have to worry if it is too high, but if it had be low I could have sure had peace of mind. I assume it is too late now, because don't they need to handle that when the tumor is removed? I will be honest that I have not read everything about BC. It seems too overwhelming to me at this point. Maybe I am doing myself a disservice here.

    Denise, Thanks for the invite. I was there Feb 2016, so it may be awhile. This was my first DH's sister and family. They are still in my life, but the kids are so busy and my s-i-l is a busy pediatrician there in BNA. I love them, though and I love BNA!

    We have a new Chick-fil-A 12 minutes from me. I grew up eating them in GA, so I am delighted. I have eaten quite a few so far. I pray I do not have the taste issues I had last time. They were the worst. I thought my tongue hated me! (Sometimes, I feel like I am repeating myself. If so, it's just Kimmo's Chemo Brain. I kow y'all will understand!)

  • hhuey
    hhuey Member Posts: 121
    edited July 2017

    Gearing up for my last round of DD AC tomorrow then will start weekly taxol for 12 weeks on the 28th...I hear taxol is easier in some ways but harder in other ways so we will see..I had shaved my head after week 2 and the stubble that I left actually feels like it is growing so hopefully it stays put..i also have my second acupuncture treatment next Thursday so I am very excited about that because she always seems to fix me right up. Planning a fun day with my kiddos with some bowling and dinner at the in laws..the night before treatment I also take the time to clean my house a little especially high germ areas like bathrooms and fold clothes. .

    I was thinking Maybe it might be nice to to get to know each other a little more besides our medical issues just to get an idea where we come from or what we do...

    I live in Florida on the Gulf Coast...Tampa Bay super hot here

    I have 3 kids 2 boys ages 10 and 6 and 1 girl age 4..my kids treat me no different which is good and bad..good because their routine goes on as pretty much normal which keeps me going and bad because some days I just want to rest

    I am married for 12 years but with my hunny for 17( he is a saint to put up with me and I with him lol..)..thank god for him taking care of me and going to some treatments when my mom cant.

    I work as a lunch lady at a local high school so it's nice to be off during this time for treatment..not sure I'd be able to work fully during these DD AC treatments as some women do due to the brain fog I have for a few days after.



  • hhuey
    hhuey Member Posts: 121
    edited July 2017

    Thank you HAPB..it is definitely not easy sometimes especially since my hubby works from home and I have to try and keep the kids quiet but we manage..sometimes I go down the "what if" path but remind myself to steer the other way to remain positive..nice you live near the ocean ..watching and listening to the waves is so relaxing and that you have a kitty to take care of..sometimes it's nice to be able to take care of someone or an animal to sort of keep us going..keep your head up

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    I live in Edmonton Canada. Yes it's cold but not as bad as you think and I do not like the cold. I'd rather be living some place warm! But for now this is where I'm suppose to be.

    I wasn't blessed to have any children. My first husband and I tried for years but found out he couldn't have any. By the time we got divorced it was too late. My current hubby has two older sons that we see occasionally.

    I'm older as well and I think with three dogs I qualify as a dog lady. My whole life all I ever wanted to do was draw, paint and make art. I retired from work last year and now I love making art.

  • LTWJ
    LTWJ Member Posts: 118
    edited July 2017

    I am 55, live in Arlington,TX ( been here 30 years now) originally from upstate NY and college in Charlotte,NC. 3 kids,2 girls, 1 boy, 2 living in other cities and 1 almost 18, hs senior still at home. My husband is self employed, computer programmer works out of the house so that helps. I work as a substitute teacher ( 10 years now) but I also carry our family health insurance because my husband is self employed. We tried the HSA for 2 years and spent over 25% of our income on healthcare between everything so we had to get off of it. I'm a little nervous about trying to go back to work in September, still doing chemo and then who knows what but I have to, to keep the insurance which has been wonderful. Round 3 on Friday :)

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    hhuey, Yeah for the last round of A&C. I, too, have heard mixed reviews of Taxol. Hope it is easier, and I will have zero complaints (except taste issues!) Bless you that you have such young ones. And what a great idea to get to know each other, because we are SOOOO much more than our BC!

    For me, I am 49. My first husband died at age 45 of brain cancer - a GBM. I was 43 when he died. Because his first brain tumor was at age 20, his chemo/rads nullified our chances of ever being biological parents. (Wasn't blessed either, Pink, but blessed to have loved him.) When he died in 2011, I went on a cruise 3 months later with a friend (I have owned a home-based travel franchise for more than 12 years) and my new DH was on the same bicycling excursion in Grand Cayman. Of course I was NOT looking for love NOR was he, having been divorced for many years at that point. But, alas, it was destiny. He has two daughters (21 and almost 17 - much closer to the oldest). I have a mini Schnauzer whom I adore. She's my pet therapy. She's nearly 9. Because of this marriage, I uprooted at age 45 from GA to IL. I miss the South, but he hopes to retire in less than 5 years (he's 50), and he is completely fine with us moving South. (I made him promise before I agreed to marry.) I want to think coastal NC, SC or GA. I can't really see me in FL, but I won't rule it out. His parents leave in an AL facility in Largo. We just had to move them in January from their home in Palm Harbor, FL. Both have Alzheimer's. Think my DH is under stress? Yep. He has worked for the same company for 22 years in a managerial role. He's super smart (undergrad Mech Eng and two masters from Northwestern MBA/MEM). (We are so opposite...lol) I hold a MA in Gerontology and work PRN for a CCRC helping elders with life enrichment activities. That's on hold while I do this, but it's good to stay in the world of aging services, though my travel work sustains me. Fortunately, doing this from home worked well for me when I cared for my first DH and now while I am dealing with my own BC. (Gosh I am wordy...sorry)



  • ml1209
    ml1209 Member Posts: 153
    edited July 2017

    Kim - so glad to see you are doing well! My epxerience with Taxol was that it was easier than A and C. I am sure it is different for all people. I lost weight during A and C, but my taste buds returned during Taxol and I craved hamburgers lol. And smells no longer bothered me anymore. Hair started growing back as well - yay! But eyelashes and eyebrows came out AFTER I completed chemo. Crazy stuff!

    Prayers and hugs all around!!

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