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Starting chemo July 2014

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Comments

  • CoyoteNV
    CoyoteNV Member Posts: 286

    Well, I'm up for air! As crummy as I feel, I know for a fact it was worse last time around.  I think staying on top of the nausea meds, helped. Last time I tried the "as needed" approach.  This time I did the 6 hours for #1, start #2 and take every 4 hours. That held me pretty well until this morning, when all heck broke loose.  Then I had to hit the Big Gun Avastin and Immodium. That stuff knocked me out but now I'm doing better ( all things are relative.) 

    I hope you are all crawling out of the pit. 

  • ChaosRains
    ChaosRains Member Posts: 90

    I'm back in the swing of things... Kind of... I wish I could sleep hard... My mind keeps telling me I would feel better if I could just sleep like the dead for a few hours... Instead I fall into a light sleep toss and turn all night and wake up feeling exhausted... 

    I'm emotional, exhausted and poor hubby is trying his hardest to make things seem normal and doable meanwhile I'm not sure anything will ever be the same again and just that thought pisses me off. 

    I want my old life back... I am a mess today :(

  • Melrosemelrose
    Melrosemelrose Member Posts: 607

    Hugs to you ChaosRains and those who are struggling a little today!!!  If you are finding it difficult to sleep, you may want to try taking a benedryl or zyrtec before bedtime.  When I was over energized by steroids (Decadron) before and after a chemo round, I would take benedryl at night to help get to sleep.  If you opt to do this, make sure you check with your onco about taking an OTC med. for sleep.

    Wishing minimal side effects for all here and know that you are not alone and others have travelled this path before you.

  • kitkatmo
    kitkatmo Member Posts: 15

    MomtoIrishQuads and Chaos, I'm so glad you're both feeling better. I'm starting Thursday and getting a little more freaked out every day. Good to know you are both shaking it off, even if it took several days.

    Jennliza, I had really hoped to work through as much as I could, but concerns about my low white count while working in an ER made me nervous. When I talked to my primary, she tells me reduced stress, good sleep and good nutrition are key things for getting through this nightmare. So I'm off work for now, we'll see how it goes.

    Love and hugs to all!!

  • kitkatmo
    kitkatmo Member Posts: 15

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  • camillegal
    camillegal Member Posts: 15,711

    I'm sorry for all u ladies going thru this now, it's not as easy as they show on TV--it's a mess and a different mess for everyone, but when it's over it will be a memory not a fond one, but a memory. That's why I think these boards are so good for everyone, there's a before, a during and after and we don't feel alone which mentally helps a lot. And for many women the after turns out fine and u get back to u'r usual routine.

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61

    Thanks KitKatmo for the encouraging quote - I think the key thing is to be prepared.  I didn't find this board until I was in the "pit" (love that term Coyote!).  Chaos - tomorrow will be a new day.

    OK - you guys are going to laugh (I think that's what we need) - I was in the chair on Wed. and asked the nurse if I could fly to LA to see my friend the Day after my next infusion.  She looked at me like I had 3 heads.  My MO did not prepare me for this at all.  Do they do that because some folks don't have an issue? 

    Here's another chuckle:  I went on a search last night for chicken noodle soup in Charleston (my hubby drove).  We don't know the city that well, so ended up on a Sunday early evening in a place that was Mediteranean.  They had lemon grass soup - my hubby couldn't find a parking place (he seems more frazzled then usual which is really annoying me which then I feel guilty for since he's really trying - there was parking right out front it turned out).  Anyway - ordered the soup - and then I noticed all around me those "hookah" smoking device things on the table - I guess you can smoke alcoholic drinks?  Talk about nauseous!  I thought I was going to loose my lemon grass soup cookies right there and then.

    So - I thought I was out of the pit - but last night, I went back into the pit.  New SE - shooting pain in all areas of my body - particularly likes to spike my lymph nodes in my neck - and my joints.  Then diarrehea.  Lovely.  Finally got to sleep around 2pm (melatonin helps me a bit) and just woke up 12 hours later.  Nauseous and the archer is still shooting arrows - this is insane!  

    Irish (aka Deb)

  • mommymel
    mommymel Member Posts: 77

    ChaoRains,

    Think again : I WILL ASSURE YOU THAT YOUR LIFE WILL NEVER BE THE SAME. BUT NOT THE WAY YOU ARE THINKING RIGHT NOW!

    Your life will be much better! I can tell you that after my first time around, everything started to feel right and lots of good things happened to me.  When we walk this path we remember even more what is important in life and how simple can be to find happiness! YOUR LIFE WILL CHANGE BUT WILL BE AMAZING FOR SURE !! 

    Be aware that this bad moment shall pass....You are a strong woman like all of us and we have the right to a WTF day. So cry, curse and let it out ,,,,,afterwards it will feel awesome kkkkkkk  :) 

  • RainDew
    RainDew Member Posts: 228

    I love the wonderful words of encouragement here. Thanks Mommymel, Kitkatmo, Camillegal.

    I don't think I am quite in the pit. But I can't get out of bed either. SO tired. All the time.

    Does this last for the whole 3 week cycle typically? Or will I get some kind of energy back?

    Don't get me wrong, I'm hugely thankful not to be nauseated or with shooting pains. If I sleep through 3 months so be it. But for someone usually very active...it's really weird....

  • CoyoteNV
    CoyoteNV Member Posts: 286


    Mommymel.  I find your words particularly moving today.  Being in the process of a do-over, I know you are correct.  For you to be so far-sighted in the midst of your own second time around inspires me.

  • puffin2014
    puffin2014 Member Posts: 917

    My oncotype score was 27, high intermediate range of cancer returning in 10 years without chemo. I get my port placed July 16 and start chemo July 17, cytoxin and taxotere with a shot of neulastin on Friday. 

    Doing what I can to prepare, stopped by the American Cancer Society office and picked out a free wig, looked through their catalog and selected 3 free hats/caps that will be mailed to me, including a sleep cap.

    Have stocked up on easy to eat snacky foods, like cottage cheese, pudding cups, applesauce cups, soda crackers, yogurt.

    Trying to live one day at a time but not easy for me, I'm a planner. Have several events coming up on the calendar, including one 2 days after chemo, that I'd like to attend and hope I can.

    Anyone have experience taking neuplastin? problems with bone pain? I'm gathering suggestions of what people have found helpful in case I have problems with that.

  • Mumford
    Mumford Member Posts: 88

    Hi, Puffin

    Hopefully you'll do great. You've already made the brave decision to go for the chemo with a high intermediate score....

    I found the Neulasta-induced bone pain to be the worst of my side effects. Hopefully, you've heard about the Claritin. Take one the day of, and for several days after (anyone weigh in here on how many days...). I figure 7 can't hurt. I also found the Advil/Tylenol combo to be best for the aches. Tylenol alone didn't cut it for me. Take these steps and you should be right as rain (I hope).

    To the rest of the gang: good to hear that you're all managing despite some challenging side effects. Keep the faith, girls. The cure is hard. 

    My new mantra: EXERCISE IS MEDICINE!!!

    Take care, all......N

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61

    Rain - just heard from a friend of mine that had 3c in the Fall (and got pregnant during chemo and delivered a healthy baby - so can't be that toxic - really??) - that she just slept through most of her heavy dose chemo SE - took Ativan and slept and slept.  Might be the way to go....although I hear you, I feel strange sleeping so much - like I'm missing something.  

    Puffin - you are so prepared - good job!  I hope you can go to your scheduled events.

    Deb/Irish

  • mommymel
    mommymel Member Posts: 77

    RainDew, CoyoteNv, and all girls thanks!

    Coyote I do see further... I learned the hard way that when I am not in a good place in my life I need to visualise the future focus on that and do what I must.  I'm committed to put myself first, to love and take care of me. I will honor my other chance to turn my life around and be better.  Don't get me wrong I really  love my life and my family(and I'm very grateful for them) but I think I need a little lol now,  because I always put everyone else first my baby my hubby my house ....I will continue doing everything but will also have " me time " to do a yoga to take a nice bath to rub my skin with oils, exercise and use food as medicine ...I think I deserve it.

    In the end if I'm happy and healthy I will have more energy to do everything to the ones I love. 

    I'm getting together lots of healthy gluten, lactose and sugar free recipes and if anyone is interested I could post some of them :)

    Ladies I see a bright future...:)   

    XO

  • jennliza
    jennliza Member Posts: 176

    MomtoIrishQuads...just wanted to give a little encouragement to push through. Although there was no node involvement, when tumors approach 1cm+ the chance of a cancer cell breaking free and getting into the bloodstream increases. So push through and know you did all you can to fight this!!

    Also you're on Taxotere/Cytoxan...which I believe is 4 tx...you only have 3 to go.

    And I do realize I haven't had treatment yet...but I do have 6 ahead of me...starting on Thurs.

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61

    Jen - that's good info. to know and something I didn't know.  At biopsy, my tumor was sized at .5 cm and Grade 2 - so easy peasy.  Then after lumpectomy it tripled to 1.9cm and Grade 3 - so borderline.  I think I'll be able to get through it if they adjust the dosage (I honestly think it was too much) - and if I hear from an experienced oncologist that it's the right thing to do.   I've also been reading a lot about estrogen and I know that the best thing in the world that I can do is to lose weight and exercise.  Big kick in the butt for me.....(I am addicted to sugar......I found a few FB pages that are Low Carb/Paleo type pages and they are inspiring so would love to join in if you get the inspiration).  

  • CoyoteNV
    CoyoteNV Member Posts: 286


    When BC showed up on July 4, 2012, I soon discovered that I was also diabetic (300+) and had gallstones. My BP was 185/140.  Oh yes, I was 50 pounds overweight.  I was told that if I did not drop the blood sugar to under 180, I would not be able to have the cancer removed.  Nor was my blood pressure acceptable...and I would not be a candidate for chemotherapy because if my gall bladder went bad, it could kill me.  I had not been to a doctor in 4 years because I knew I was not doing such a good job at taking care of myself.   I kept saying...."I gotta get it together."  At that time I was a total sugar addict.  There was no such thing as enough sugar.  I pulled it together enough to have the first mastectomy August 21st.  My surgeon was still concerned that my health was compromised and would not do the Bi-lateral mastectomy and the gallbladder removal, and install the port all at once, so the rest of the surgery had to wait a week. 

    During those few weeks that I prepared myself for surgery, I did a lot of research about how all my various ailments could be connected.  There are multiple schools of thought on the subject.  I have come to my conclusions, but neither of the oncologists from which I have received treatment totally see my opinion as having sufficient studies to be proven as true.  Each of us will accept or decline belief.  My big question has been....Is there anything I can do to help me?   Do I have any control over this at all?  

    I have to say, I'm not sure how many of my opinions am I allowed to share here.  I am not a doctor, a nurse, or any other health care professional.  I remember looking at the ultrasound of my original tumor and seeing a black orb with alien like fingers suspended above it, as if it were a hand.  It was terrifying.  I was told that those were blood vessels.  My research and that nightmare vision finally led me to an important word - angiogenesis.   How it applies to us is that the tumor has the ability to attract and build a blood vessel system to feed it....to make it grow...to help it spread.   I discovered that in some research opinions stopping angiogenesis is a big deal in stopping cancer spread.  There are however lists of anti-angiogenesis foods (that make up the bulk of my diet.)

    When my husband was taking me to the hospital for my second surgery, we heard an announcement from the National Cancer Institute saying that women who had previously had breast cancer should never be overweight because it increased the metastasis chances for cancer.  Interesting because increasing body fat increases the body's angiogenesis capabilities.  

    I tried to speak to my oncologist about this, but he blew it off. No Proof.  I had cut refined sugar, refined flour, white rice, white potato to zero.  He said, "It is probably good for you. but there's no proof it will help."   I must admit I did not add the exercise that I should have.   This last February, my body started screaming for sugar.  A little voice rang in my head, "Hey, there's NO Proof."  When I had my oncologist appointment my markers were up slightly. The doctor said they were within range, so we would check them at my regular appointment in November.  I caved to the sugar cravings, but kept my blood sugar in check with meds.  I gained 15 pounds.   I was fortunate to have a check up with my surgeon in May.  He found the 3.5cm cancerous lymph node.  And here we are. I have once again and forever  cut refined sugar, refined flour, white rice, white potato to zero and focus on anti-angiogenesis foods!


  • magdalene51
    magdalene51 Member Posts: 2,062

    My dear July ladies, I was feeling guilty that I haven't been around even though I started this thread, then I saw how you have all gathered around each other and lifted each other up, encouraging each other and sharing your experiences, and, yes, your pain.

    I have hit bottom emotionally, to the point of wondering whether I really even want to continue treatment. I am so tired. My quality of life wasn't that great before cancer, what with the arthritis, fibromyalgia, degenerative disc disease, etc. and this is dropping it down to nil. By the time chemo is done, and then rads, and then hormone suppression therapy, what have I got? A heartbeat? 

    I've been informed that that attitude is not acceptable. That I must fight. From where will I draw the resources to do so? Where will I find the motivation?

    Today was a little bit better. My cousin (who lives with us) gave me a pep talk. But I just can't seem to summon the desire to keep going.

    Maybe I'm just missing my estrogen, you think?

  • dancingdiva
    dancingdiva Member Posts: 317

    oh Mags, Have u seen somebody about how u feel? I haven't even started treatment, so I cannot speak from experience. I start this Wednesday and I already have a horrible attitude. changing the attitude is not so easy. For me, I had to find a little speckle of hope. Maybe speaking to someone will help? We need a hug party.

    Do any of u take sleeping pills? I haven't been able to sleep well since this whole ordeal began so I'm taking Imovane to sleep which helps and am planning to continue with it through treatment if I can. 

  • mommymel
    mommymel Member Posts: 77

    Mags don't give up on this, I know it's pretty hard but you can do it. Think about the future after chemo is done radiation and hormone are nothing ... Easy and no side effects they are rare btw and soon enough  you be just fine. 

    In the other hand you could do some things to help you go along. 

    For the aches you could try Epsom bath. That will take the bad chemo stuff of your pores . Also do it with lavender oil to smell will  relax you and a camomile tea with honey to calm you down before bad. I know it feels like a lot of work but in the end you will feel much better I assure you. Try it out and tell me, I bet in the next morning you will be up to a quick walk outside :)

    You are powerful and you can do it ! Be good , feel better.

     XO

  • mommymel
    mommymel Member Posts: 77

    Coyote,

    Thanks for sharing I do believe you are right but in the end what do I have to loose.,, it will improve my healt a lot and there is a chance that we are doing something good to prevent this awful disease. I'm also doing lots of research and having chlorophyll shots to help alkaline the body. For whom eats meat it's good to have kelp to sparkle in the food, and also lots of herbs and spices. I do believe that food play a role on it but we don't know way this disease happens so I'm just thinking about healt life style  and improving my life in general.

    I sure have some recipes to help with your sugar cravings ..,. :) I can send it if you want....

    XO

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61

    Dancing Diva - I started taking melatonin and it really helped me sleep.  The steroids that they give you will give you tons of energy and you won't be able to sleep.  I really hope that you don't get SE's.....keep positive.  Many don't.

    Mags - big hugs to you.  This stuff really does suck - but there is always tomorrow.  Fibro is the pits so I understand why you feel defeated.

    Coyote and Mommy Me - you have inspired me to eat healthy.  If Coyote can lose 50 pounds so can I!  And if MommyMe can squash sugar cravings - well, then life is good.  I have to tell you that this past week of hell has been a big eye opener to me.  Sugar and carbs just isn't worth it.  I also think I'm going to go throw away all my plastic containers (phytoestrogens) and go back to yoga.  I felt like I was paying the price this week (although having said that, I just had two of my healthiest friends get diagnosed - so you never know). 

    Deb/Irish

  • Blownaway
    Blownaway Member Posts: 662

    Momtoirish - I too had the shooting pains in various locations, it lasted over a week. I am on TCH but dont know which of the drugs caused that S/E. 

  • Blownaway
    Blownaway Member Posts: 662

    Melrose - I take benedryl for sleep also but during my time in the pit, I took ambien at night since I stayed in bed round the clock for 2 days. It was like my little treat to myself. My onco approved it so I guess it was ok 

  • Blownaway
    Blownaway Member Posts: 662

    Melrose - I take benedryl for sleep also but during my time in the pit, I took ambien at night since I stayed in bed round the clock for 2 days. It was like my little treat to myself. My onco approved it so I guess it was ok 

  • Blownaway
    Blownaway Member Posts: 662

    Puffin - looks like you and I had similar surgeries. Good luck with your first infusion. Soda crackers and gingerale laced with plenty of water was all I could get down for 2 days. Drink as much as you can to flush this stuff out of your system. I didnt have the neulastin shot but still had some pretty severe shooting/stabbing pains all over. I started taking more of my anti-nausea meds than was prescribed and the nausea got better. Dont tough it out, call your onco if your side effects a re not being managed. My 2nd infusion is 24 July and I hope to do better this time around with more knowledge under my belt. 

  • Blownaway
    Blownaway Member Posts: 662

    Mags  - you stop that right now. They took my premarin that I have been on for the last  15 years away. If this diva can give it up so can you! Im not worried very much about losing my hair to chemo because half of it fell out for lack of estrogen since diagnosis. You are going to get past all this and then turn your health around. Hang in there, cry and scream but hang in there.

  • mommymel
    mommymel Member Posts: 77

    Today is my big day girls.it's one down and five more to go.., I updated my photo, this is my selfie with shorter hair. I will shave next week...

    One of the things that help me out with hair and nails is a supplement called Biotin. See with your MO if you can have it.

    To flush toxins away water with lemon do the tric. If u want drop a spoon of pomegranate to reduce inflammation and a dach of salt to add minerals. I have drink it  that and scape from a big cold that my hubby had and pass out to my doughtier.

    Well I will keep posting hopping for no side effects.

    XO

  • ChaosRains
    ChaosRains Member Posts: 90

    Hey everyone! I have returned from the depths of despair- and i couldnt have done it without you! You all had valid points yesterday... reading them really helped put things in perspective again. Guess its easy to hitch a ride on the pity train when so much is going on.

    I had not been taking anything for SE for the last few days... before this diagnosis i wouldnt even take antibiotics preferring the natural remedies approach and it almost seemed sacrilegious to rely on tylenol or advil or any other drug to get me through this... i had been telling myself your system is already poisoned with chemo drugs why take more and compromise your system more?? 

    BUT i finally broke down last night and took ativan the onco had prescribed and an ibuprofen and had a decent nights sleep!

    I realize some days are going to be harder than others but im determined to try and keep a positive attitude from now on... when you are focused on what you cant do, that is all you tend to see... 

    so rather than obsessing about my shaved head when i miss my flowing locks, or feeling like a failure when im tired after doing two loads of laundry and have to take a nap when a month ago i could do an hour on the eliptical easy i am going to try my hardest to instead focus on the things i can do and not let that negativity take over...

    They say attitude is everything... it probably wont be easy but it will be worth it!

    Thank you guys for holding me up when i couldnt do it myself!  :)

  • ChaosRains
    ChaosRains Member Posts: 90

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