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Starting Chemo September 2019

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  • angieb92
    angieb92 Member Posts: 291
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    Hey KV! I really haven’t adjusted anything to accommodate my port. It’s on my right side and sits tithe inside of my bra strap so that’s handy. The area is just sore today but the port itself doesn’t hurt at all. I’m a side sleeper and worried that I couldn’t do that anymore but I slept just fine last night.

    I’ve had quite a few irrational fears since I was diagnosed. One was that I would not be able to be functional because (1) it would make the cancer spread (2) I had to be careful with my port because any wrong move and it would rip my vein and I would bleed internally and (3) that chemo would render me completely incapacitated. The first two irrational fears were put to bed. My oncologist recommended exercise and movements (we have a farm and I’m constantly lifting heavy things and being outside and sweating.)

    I’m hoping chemo will grant me the grace of not being 100% incapacitated. But I am ready to get this cancer gone! I still have fears of spreading/recurrence/how I will do on hormone treatment etc but I rein myself in and try to tackle one fear at a time.

    I am with Gamb and thank God for all of you!!

  • kv99
    kv99 Member Posts: 11
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    Anna, I am on Amazon right now looking at the cold therapy. My chemo coordinator recommended getting them on Amazon, and the two brands my center recommends are Natracure and Arctic Ease. I haven't bought yet, but so far Natracure wraps get much better reviews.They also recommend the reusable cold or hot compress sold at Target.

    She said I would be doing it during taxol for 15 min before, 60 min during, and 15 after.

  • Gamb
    Gamb Member Posts: 570
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    yes good question, I would like that in for too, my oc said they would just put hands in feet in ice water for taxol

  • lms458412
    lms458412 Member Posts: 289
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    I ice my hands and feet during my Taxotere infusion. I bought the NatraCure socks plus extra inserts from Amazon and they worked well. I switched out the gel packs halfway through.

    For my hands, I put ice in two gallon-size plastic bags, then put my hands into quart size plastic bags and buried them into the ice bags during the infusion.

    I also sucked on ice cubes the whole time. I'm also cold capping, so I was a popsicle!

    I won't know until the end if it worked, but after #1, I have no mouth sores and no numbness or tingling in my hands or toes. I will keep icing and hope the good luck continues.

  • lms458412
    lms458412 Member Posts: 289
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    Anna, there is a pinned post here in the Chemo section with 20 terrific tips for TC. I got a lot of my info from that post. But, I can tell you some of the stuff I bought that has been useful so far:

    OTC pain reliever - whatever your oncologist recommends

    Miralax to help avoid constipation

    Senakot-S in case of constipation

    Immodium in case of diarrhea

    Waterpik for cleaning teeth, my oncologist says avoid flossing

    Extra soft toothbrushes

    Ginger capsules or lozenges for nausea

    Claritin - take this daily for about a week if you are getting Neulasta

    Mild unscented lotion and lip balm - skin gets dry

    Silk or satin pillowcase

    Soft cap to sleep in

    I also stocked up on some blander foods, like bread, applesauce, crackers, etc in case of nausea.

    For treatment days, I take a heated blanket since I'm cold capping, plus my gear for icing hands and feet. I put ice in a cooler. I bring a big container of water and a variety of healthy snacks. For entertainment, I have my phone and whoever's with me (hubby for #1, my dad will be at #2). I also bring fuzzy socks to put on after I'm done icing.

    This is not a complete list, this is just what's been handy for me so far. Hope it helps.

  • Juniebird
    Juniebird Member Posts: 5
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    I use the NatraCure booties on my hands as well, so I have two pairs with extra inserts, worked out well for first treatment.

    In addition to ginger lozenges I had lemon drops.

    Only SE I had this week were fatigue and loss of appetite. I did stay hydrated, though.

    Is anyone else fasting? I'm doing the 24 hour before fasting, then a small meal after chemo, then nothing the rest of the day/evening. I'm wondering if I should try and add more in day before since I lose my appetite...

  • tmh0921
    tmh0921 Member Posts: 519
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    I just wanted to let y’all know that the fear does get better over time and there WILL be a time when you go days without thinking of cancer.

    During my first Dx 20 years ago I was TERRIFIED, and convinced I was going to die. But as I finished treatment and time passed, life gradually settled into a new normal and cancer became less and less a part of my every day thoughts.

    This time around, I was surprised not to have a repeat of those feelings. I think it’s partly my anxiety meds, and partly because cancer has been apart of my life for so long.

    Don’t get me wrong, I’m scared, mainly of chemo and what this is doing to myself and my family. But I wanted to reassure you that it DOES get better over time.

    Hugs to us all, cancer sucks

    Tracy

  • Floridaliving18
    Floridaliving18 Member Posts: 52
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    yes I live in Orlando in the Oviedo area

  • Floridaliving18
    Floridaliving18 Member Posts: 52
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    Lms,

    Does cold cap work? Trying to find information on if it works. Also icing feet and hands what does help with ? Thanks for info.



  • Floridaliving18
    Floridaliving18 Member Posts: 52
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    yes I live in Orlando Metro nearOviedo area

  • kv99
    kv99 Member Posts: 11
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    Juniebird, I will be doing the exact same weekly fast per my oncologist, starting Sunday Sept. 22 before my first treatment.

    Tracy, thank you, that is so helpful and encouraging to hear.

    Great shopping/getting ready list - I'm going to get myself organized this week! Up in the middle of the night because as a side sleeper there's no good way to go with this lymph node biopsy situation.

  • Turkeypoult
    Turkeypoult Member Posts: 27
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    TCHP, cycle 1, day 4-6, I’ve had to strike a balancing act with diarrhea and Imodium. At first I think I used too much and went into constipation, which was awful to say the least but is now resolved. So figuring out what to eat was a challenge. I have little appetite and have settled for BRAT diet plus yogurt for protein. I have lost over 10 lbs. in 4 days (remember, I am 6’) so getting my diet on track is a must. Hopefully, I will eat more ‘normally’ soon.

    I have walked on my elliptical each day, albeit slow. I also walk indoors around the house (it is very hot outside.) I also continue my stretches each day. Even though I feel tired I want to move.

    I continue to be amazed at the ‘pings’ all over. Little bursts of pain that hit and go. The only lasting pain has been long bone aches - my legs and arms ache most of the time. Cool, slow showers help.

    I am looking forward to the “feeling better” that’s supposed to be around the corner


  • FTM
    FTM Member Posts: 24
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    Hi all. I’m a week post cycle 1/6 TCH. I felt pretty crappy the first 5 days but I’m doing better now. Extreme fatigue, nausea and I guess this chemo fog or some weird feeling of brain fuzziness. I cut my hair short yesterday in anticipation of the hair loss(not cold capping) so feel a bit miserable about that. I think baldness might be better than my current do(lol). Glad to see everyone is doing good. For anyone feeling bad right now it does get better... Stay strong ladies and have an awesome weekend.

  • Gamb
    Gamb Member Posts: 570
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    Hey all, starting a day 3 post a.c., I'm doing ok, feet swelling went away the first night, yesterday evening had some nausea, bad enough to take extra meds, but got it took care of. Bowels havent figured out what we want to accomplish, diarrhea pr constipation. Hope all have wonderful . Rest and comfort

  • Turkeypoult
    Turkeypoult Member Posts: 27
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    Right behind you, FTM. I’m looking forward to the ‘feeling better’ part.

  • Turkeypoult
    Turkeypoult Member Posts: 27
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    KV99, for weeksDH kidded me about my shopping lists. I went out 3 times with lists in hand, after reading, reading, reading. But after starting my first cycle on Monday, I was so glad that I did. I have not been without a single medicine or item needed all week, and DH appreciates that he hasn’t needed to make any last minute runs to the store.

  • lms458412
    lms458412 Member Posts: 289
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    Floridaliving - Small world! I live in Oviedo. Hi neighbor! So sorry you are going through this, too.

    My cancer center, affiliated with AdventHealth, offers the Dignicap cold capping system. The majority of cold cap users keep at least 50% of their hair. It's not guaranteed. I was not going to cold cap at all. But, one of the drugs I'm being given, Taxotere, has a very small chance of permanent hair loss. I am only 47, so I decided I wanted to try whatever I could to ensure I kept a decent amount of hair. It's a big expense, but I felt I needed to try.

    Icing hands and feet is to try to prevent neuropathy, which can sometimes develop when receiving Taxol or Taxotere. Ice them for 15 minutes before, during and 15 minutes after the infusion of that drug.

    I have only had 1 treatment so I can't speak to the success of icing or cold capping personally, but lots of people on these boards have had good luck.

  • lms458412
    lms458412 Member Posts: 289
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    Turkepoult - Glad you are doing ok. I lost 3 pounds the first 4 days, but put a pound back on the past couple days. My appetite came back, even if food tastes a bit bland. At day 9, my energy was back to 85%, so hang in there. It will get better soon.

    FTM - Glad things are improving for you!

    Gamb - Glad the swelling went away. Keep resting.

  • tmh0921
    tmh0921 Member Posts: 519
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    is anyone’s taste buds back to normal between treatment?

    Things still don’t taste right 10 days out, water especially

  • Gamb
    Gamb Member Posts: 570
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    HI TMH, I've only had one treatment and my taste buds haven't been effected yet, sorry its still going on with you. Did it happen with other treatments

  • tmh0921
    tmh0921 Member Posts: 519
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    this was my first chemo so I’m trying to figure out when I can enjoy food again

  • lms458412
    lms458412 Member Posts: 289
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    My taste buds were weird for a couple of days after treatment, then everything tasted fine for a few days, and now everything is bland again. Water tastes fine to me, but a lot of foods either taste weird or muted.

  • snaffle53
    snaffle53 Member Posts: 107
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    Feeling pretty weak 3 days out from 2nd AC treatment. Appetite way down. But conquered the constipation this time. All there is to do is rest and take things slowly. I know that even as soon as tomorrow that things will start to get better. My big goal this week is to see the Downton Abbey movie on Thursday. I know my blood count will be low. So I will wear a mask. Really looking forward to it!!

    Wishing all of you a restful weekend

  • aln82
    aln82 Member Posts: 6
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    Thank you Kv99!

    I’ll take a look. They didn’t mention anything about this to me and my first tx is Monday so maybe I’ll just grab the target ones and ask them about it on Monday. Thank you for lookin into that for me!!

    Anna
  • aln82
    aln82 Member Posts: 6
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    this is great LMS- thank you!!

  • tmh0921
    tmh0921 Member Posts: 519
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    snaffle

    Glad you’re not having constipation - fingers crossed you get out to see Downton Abby

  • tmh0921
    tmh0921 Member Posts: 519
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    my oncologist said that she’s only seen a few cases of permanent hair loss on a Taxotere, but they’re finding that those that do are already predisposed to alopecia.

    Tracy

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Please consider investigating the fasting mimicking diet, if you are experiencing GI SEs. As you can see, crap GI issues disrupt appetite horribly so you fast ANYWAY! But in deliberate fasting, you take control of the cycle, decide when to eat lightly, and minimize both the SEs and their timespan. You eat lightly on the front end of chemo and bounce out of it faster.

    FMD was developed by Dr Valter Longo at USC and there is a ton of info online. In mice, FMD resulted in a significantly better response rate to chemo.

    Fasting tells healthy cells to hunker down (no fuel coming in) and diseased cells to die(no fuel coming in). Cancer cells become very stressed, and thus more vulnerable to the slap of chemo while healthy cells are more 'hibernating' and not taking it up so much. Less intense SEs are the result.

    Basically you do 5 day very low call veggie based low protein diet with chemo day on day 3. Day one is 1100 cal and days 2-5 are 800 cal. A typical 250 cal "meal" on FMD would be a handful of walnuts + sauteed veggies; gazpacho plus 1/2 avocado, a hardboiled egg atop a frisee salad, etc. 10% of cals from protein food per day (110 calories day one, and days 2-5 only 80 calories from "protein" food. EG 1.5 eggs or 3 oz serving of fish is the protein limit, per day the rest is broth, avocado, veggies, salads, berries). There is commercial food you can buy to do the diet if you wish but it is not hard to replicate the calories, fats, carbs on the above lines.

    VERY impt to "re feed" nutrient dense foods when you break the fast! Eat stuff that nourishes you and this boosts/resets the immune system. A likely reason for the better chemo results in the FMD mice.

    Frankly day one is the hardest! It gets easy and feels good to "close shop" before chemo. I adore food and could not imagine a 3 day water fast (I did one in the past and hallucinated!) but for people who water fast, that can work too. Only 3 days and chemo day is again middle day - day 2.

    I found it very very helpful. No puking or other bad SEs-- nothing other than anemia towards the end. And, I escaped with virtually no aftereffects from chemo (now 10 mos PFC). Normal blood values, no neuropathy, etc. I think fasting helped me protect my health and I am certain it dialed down SEs since mine got so much less from chemo 1.

    They arenow doing a clinical trial in humans to see re chemo uptake. But much evidence in already on calorie restriction & longevity and how periodic or intermittent fasting is dynamite on glucose triglycerides, etc.

    If you spend all day addressing GI SEs, it will be worth reading up on Dr Valter Longo, FMD & giving it a try.


  • lms458412
    lms458412 Member Posts: 289
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    I also heard there are only a few cases of permanent hair loss. I heard younger people are less at risk as well. So, my chances are next to nothing that it would be permanent, but I'm not a risk taker! I knew I'd sleep better knowing I tried.

  • angieb92
    angieb92 Member Posts: 291
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    I asked my oncologist about Taxotere and permanent hair loss and he said in his 20 years he only had one lady who was affected. Herhair grew back but it was thinner.