November 2014 Starting Chemo Crew

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  • Astarte
    Astarte Member Posts: 45
    edited November 2014

    Ok, thank you both :) I'll just keep him away from my water as I have been.

  • Shayne36
    Shayne36 Member Posts: 15
    edited November 2014

    hi

    I'm starting chemo Tom day after thanksgiving 6 rounds Tch please anybody who has started and has similar chemo please tell me of some side effects you are having. I'm so scare

  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Shayne ..Welcome to the thread ..I completely understand your fear I was exactly where you are now almost 2 weeks ago. I started TC chemo on 11/17 I was terrified leading up to it but was pleasantly surprised to find it wasn't at all as bad as I expected. First ...drink AS MUCH water as you can from now until treatment. Also I suggest you have a cup full of ice at all times letting it melt in your mouth during infusion ...I never experienced nausea because I took my nausea meds ahead of time maybe 4 hours after I left the cancer center and stayed on schedule with them for the next 4/5 days. I won't say I was side effect free but it was very tolerable. Just occasional fatigue and a day or 2 with the big D but 1 cap full of kaopectate really helped with that. I know you're nervous but believe me when I say you will be Fine. My prayers are with you on tomorrow. Show em what you're made of! You got this!

  • cc3373
    cc3373 Member Posts: 100
    edited November 2014

    Shane

    Hi. I too was very scared and started chemo the same day as Erica, and I agree it wasn't as bad as my fears were. I did drink icy cold water during treatment. And I drank a lot of water the days ahead and when I got home. I got nauseous on the way home and took the pills. At home I then drank ginger tea and tried to keep getting water in. I fell asleep, woke up, got off the couch, showered and to bed, slept all way through night & most of am. I too stayed on nausea meds 4/5 days. I did not get constipated, but I normally take magnesium anyways, cleared that onc doc and am finding it helps. I was very fatigued that first week and could not concentrate etc but it was not horrible. Everyone seems to react different but we're getting different drugs... Mine are a/c. I will keep you in prayer. For me I also had a port put in that same day. That terrified me too but I gave it over to Jesus and then I was a lot calmer. Love and hugs - chris

  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    Good luck with chemo Shayne! You have a lot of great ladies here on this thread who are praying for you. I am in the same boat as you are now and start next Monday. I think there are a few of us (December group) that start Dec 1 so we are riding the wave with you. Take your chemo bag with little snacks too..just in case.

    Erica, How are you doing? I have been wondering how you are and when round 2 is.

    [Feel free to join us on the FB page if you like Shayne. Just PM me your email and I will send you an invite. Check your spam box too incase it ends up there. ] There is an interesting wig discussion going on over there at the moment. And, it is a secret group. No outsiders can see it but us.

    Easy Thanksgiving here. We stayed at home and didn't even have turkey. We did a pork shoulder, black beans and winter squash. Wonderful. I recently had turkey for the office party so brought home all the leftovers.

    I think sanitation will be important around chemo time and beyond. This weekend we are cleaning up the bathrooms and doing some vacuuming and changing shower curtains. I bought some Dove soap that is gentle on the skin for showering. It is a bit fragrant so wondering if that will be a problem. Shopping and planning for hair loss next week but I don't anticipate hair loss till second week or so in Dec. My husband Peter wants to shave my head with the clippers when I am ready. Think we will make it an event.

    Sorry for the ramble. I am an early riser anyway so am alert at 6am every morning. No work today. Yay! So long weekend. sigh

  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Hey Bonnie! Doing pretty good gonna start gearing up for round 2 soon.... it's Dec 8th. Like you, we stayed in for Thanksgiving as well... No turkey either, had a couple Cornish hens (my husband loves em) a few veggies, baked mac and cheese, he also loves stuffed Bellpeppers so I made a few of those and a strawberry cake. My husband is from new orleans but moved to tn to be with me so Thanksgiving is a little different... he's used to gumbo and red beans and rice as usual holiday food but I haven't quite mastered it yet. Might give it a try for Christmas. I think it's wonderful you started the fb group...I may be the only person on earth not on fb... well I was, I had a page for years but ended up getting logged out when I got a new phone and didn't remember the password to the fb page or the email I had it linked to so I just did the twitter and Instagram thing. You're like me, I did a big clean before chemo too to kinda have a fresh start on everything. I went Monday for my 1 week post chemo check up and my wbc was low (As expected) so he put me on antibiotic cipro for 5 days as a just in case. Other than that everything is going well.

  • Dee4C
    Dee4C Member Posts: 27
    edited November 2014

    Hi ladies, just wanted to offer some encouragement. I'm on day 5 of TC and it has not been nearly as bad as I thought. In fact, yesterday I was still able to eat a full Thanksgiving meal and taste everything. No big "D" or "C" happening. I feel tired and slightly sore with headache but that is really it. I plan to exercise a little today. No nausea. HUGS for those just starting 1st rounds and those almost on round 2. Keep drinking the water! I have to keep getting up all night but I think it's worth it to minimize the SEs.

  • Jumpship
    Jumpship Member Posts: 305
    edited November 2014

    I've had two sleepless nights…and I'm not vacationing in Seattle. Any thoughts? I'm on zofran an ativan. No luck. The pharmacist didn't have anything to add. Nasasu and upset tummy "d" lasting a lot longer that expected. I feel bad that I couldn't take my little one Black Friday shopping today. She was so looking forward to it. Her aunt wanted something to do I said, "drive up here take her shopping-it would mean so much!" Guess not. It's hard handling my own disappointments, set backs, upset tummy and then watch my kids upset. Oh well! So glad you are all here.


  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    The Ativan actually makes me sleepy. My oncologist also suggested Benadryl at night. You might want to try that.

  • jennyjax
    jennyjax Member Posts: 3
    edited November 2014

    HI all! I'm new to the group. My first chemo was Nov 3. I'm getting adriamycin/cytoxan every other week x 4 rounds, followed by weekly taxol x 12. I, so far, have had minimal side effects. I have been diligent about the water drinking...even on the 2 days post chemo when I don't feel right. After my first AC, I literally had almost zero SE's. The next round was on 11/17, and I must say I was fairly queasy off and on for at least 2 days post, and certain smells really gagged me, but by day 3 in the afternoon I was coming back! I get neulasta shot 24 hrs post chemo. I've been taking claritin the day of shot and 4 days after....not a single bone pain! I go in for AC #3 this Monday, Dec 1- I pray it goes as well as the first 2. I must say, it is so true that all of this is going much faster and easier than I anticipated. I sure hope that continues...the holidays def help! I'm beginning to get a little touch of cabin fever, as I have really been staying very close to home to avoid all the germs this time of year. I keep telling myself this is a short amount of time in the big picture, and there will be plenty of time after it's all said and done to make up anything I have missed! Overall, this diagnosis has already changed me for the better- I have def re-prioritized things in my life, have learned to not sweat the small stuff, and generally have realized all any of us have is the present moment...so make the most of it! I am sorry that any of us are on this forum, but at the same time, what a wonderful blessing!

    Cheers to each of you! We CAN and we WILL get through this, and will be all the better for it!


  • nitengirl1
    nitengirl1 Member Posts: 38
    edited November 2014

    Tallalassie- did they say you can have an occasional drinK? My MO looked at me like i was an alcoholic for asking and just said no. I didn't think to ask if that was a total no or maybe after a couple of weeks you could have a drink before the next round. I'm afraid to try any wine in case it make me nauseous, but I haven't been nauseous lately.

  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    Nitengirl, my oncologist said I could have an occasional drink. I asked because I have a holiday party coming up and I'd like to at least have a glass of wine! It's not on chemo week, otherwise, I probably wouldn't have one.

  • jennyjax
    jennyjax Member Posts: 3
    edited November 2014

    nitengirl1- my MO actually asked me if i ever drank alcohol. when i told her i did i was shocked at her response which was "oh, good. my patients who drink tend to handle chemo much better with fewer side effects than those who never drink alcohol..." she said it has to do with your liver being already "primed" to tolerate it. LOL! anyway, she said if you feel up to it, it's ok to drink occasionally. she did recommend folic acid supplement, though. i have had maybe 2 glasses of wine since starting chemo Nov 3, but honestly it just doesn't taste all that good to me right now.

  • knittingPT
    knittingPT Member Posts: 156
    edited November 2014

    Hey Everybody! Had a nice Thanksgiving with friends. But, I ate too much and ended up with a tummy ache last night (my own fault . . . no fault of the cancer or treatment!)

    My hair is falling out in bigger clumps now. I've been wearing hats/scarves but by the end of the day the elastics give me a bit of a headache. I'm having to watch the hats throughout the day too because they start to inch back on my head. Does anyone have any suggestions to stop that?




  • Shayne36
    Shayne36 Member Posts: 15
    edited November 2014

    I had chemo today so far so good Benadryl they gave me had me drowsy other than that I have a slight headache but I'm doing well

  • Mrshq1
    Mrshq1 Member Posts: 20
    edited November 2014
    Hi Bonnied. I know we are now Facebook friends but I don't see a group. Please, no rush if you haven't had a chance yet to send me an invitation. I'm just checking if it's an error on my end. Thanks. Michele McCloskey Smith
  • TallyLassie
    TallyLassie Member Posts: 56
    edited November 2014

    Love the takes on alcohol! I asked the nurse prior to chemo if I could drink a glass of wine now and then and she asked "well, a whole bottle is a glass, did you mean that?" She said a single glass now and then would be fine. Funny about the livers being prepped! I'm not sure if it's helping with my SEs. Yesterday at Thanksgiving dinner, I was surprised at how much I enjoyed TWO flutes of champagne. But then I tried a sip of chardonnay, my favorite, and it tasted like gasoline.

    Just as well. Gotta stay hydrated for #2 on Monday. Sigh, I'm feeling so good now I hate to go back. Celebrated with a hike today. I have found, if possible, that staying active even when I just want to crawl up on the couch, is helpful for sleep and regularity.

  • cc3373
    cc3373 Member Posts: 100
    edited November 2014

    Minivan,

    I hope you can find your rest, I know that sleepless feeling (have battled it most of this year even before the Cancer stuff)! For me what finally worked was listening to Mary Maddux relaxation/sleep apps on my iPhone and melatonin with theanine (check with your Onc first) and warm milk. I think the warm milk helps me drift off, the melatonin keeps me there asleep that is. My suspicion was my hormones were the aggravating factors to my sleep issues...which I'm still somewhat plagued by, but nowhere near where I was! Good luck :)

  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    The warm milk is a good idea. If you don't like dairy, you could warm up your favorite nut milk. Take a whole nutmeg and grate it over the warmed beverage. If you add a good teaspoon or more of fresh grated nutmeg to the warm milk at bedtime and give it about an hour you will drift off nicely… nutmeg has relaxing qualities..


  • Shayne36
    Shayne36 Member Posts: 15
    edited November 2014

    Question Jenny.jax

    I have the shot Tom and I was wondering did your doctor suggest the clarintin.

  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    I think most onc's recommend taking the Claritin

  • jennyjax
    jennyjax Member Posts: 3
    edited November 2014

    My onc did not necessarily recommend the claritin- a friend of mine in Dallas who went through all of this last year told me about it. I asked my doctor, and he said it was fine to take it, but he didn't know if it would help or not. So far, I haven't had a single pain! I will continue with claritin!

  • SCVA
    SCVA Member Posts: 11
    edited November 2014

    Hope everyone had a nice Thanksgiving....

    I agree that water has been the most important component to keep side effects away for me and take the anti nausea on schedule with some food in your stomach....I am half way thru AC finished second one on Monday and seem to be doing well just more fatigue and not much of an appetite. Lots of small snack meals are helping....

    KnittingPT...I would try some double sided tape just a piece inside the cap in the front and back to hold it in place...I still have stubble which seems to catch everything even when I sleep so I have started sleep with a cap and have a silk like pillow case (couldn't find a real silk one). When I got my wig they gave me a roll of double sided tape to use.....

    FYI for Northern Va ladies I went to Joi's wigs in Springfield and they were great and very reasonable-person I saw was Suki.....but not sure how often I will wear the wig....it's hot and not in a good way :)...

    Claritin seems to help and my doc said take for 2-3 days after the shot....also MiraLax the day before chemo, day of and day after if you find you have constipation SE. Just mixes in water and there is no taste. I chew on ice chips during AC portion which is supposed to help prevent mouth sores seems to work so far :)

    Grateful for this group and dialogue....thank you ladies and I wish you all good health as we go thru this journey together.


  • SCVA
    SCVA Member Posts: 11
    edited November 2014

    just a suggestion on caps....I did searches on Amazon and found some good caps...search chemo caps and you will find some vendors...I also picked up some sleep caps that are nice cotton which keep your head warm without being too hot....if you don't want to try Amazon go to a wig shop....they seem to have a good selection....


  • dhustedde
    dhustedde Member Posts: 29
    edited November 2014

    This group has been so helpful to make you feel like your not alone! I'm on Day 10 since my 1st Chemo and feeling much better than this time last week. My muscle pain has pretty much stopped. I've still been taking the Claritin and am afraid to stop taking it. My energy level is better but not 100%. My taste is a little better too. I still have to eat small meals and often. On thing is that I still have stomach issues and the big D. Seems like when I eat it goes right through me. How long is that supposed to last I wonder. My next treatment is Dec 11th so I'm hoping to get some things done while I feel better.

  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    DHustedde, you may want to keep track of what you're eating. I had a milkshake a few days after chemo 1 and it gave me the worst stomach cramps and Big D for several days. This time I stayed off the dairy and have been okay so far.

  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    Welcome Donna! Sounds like you are working through the first round pretty well. I will be anxious to hear from the one nurses and dr on monday about managing SE with OTC drugs…claritin etc. I think i outta put some on my shopping list along with L-Glutamine powder. I've been reading about that for mouth sores and ulcers further down in that system. Its a powder (an amino acid) that helps speed up repair of sores in the digestive system. It is usually a component of protein whey powders too.

    Tallie, I love the takes on wine! I was enjoying rum and eggnog last night…kind of like a last boozy indulgence before chemo 1. haha

    Have a nice weekend..

  • Kimberli43
    Kimberli43 Member Posts: 14
    edited November 2014

    Mrshq1 - A gator married to a Seminole?! I didn't know that was allowed. That must make game day really fun. We have gators and Seminoles in my family too. I did teach my 3 year old the FSU fight song which he sings for me throughout the game. It is game day.....I would be interested in a friendly wager. What do you have in mind?

    I am on day 6 and finally feeling better. The extreme exhaustion and body pain did me in. I was dizzy and felt spaced out. Day 3 I wasn't able to get out of bed. It was terrible.

    I was trying to drink lots of water but it was tough. I was able to drink ginger ale. Do you think that's just as good? I don't think I took enough Claritin. Next time more fluids and more Claritin.

    Any advice for next time? How are you dealing with the fatigue? Any supplements?

    I can't believe I have to do this 5 more times.

    Hope everyone is feeling ok.

    Bonnie - I sent you a message on FB to add me to the secret group.

    Kimberli

  • TallyLassie
    TallyLassie Member Posts: 56
    edited November 2014

    Kimberli43 and Mrshq1: I'm rooting for my hometown Seminoles today. These college football rivalries are a fun distraction. Yesterday I cheered on my alma mater University of Arizona on to victory over Arizona State. It would be ironic if the Gators beat the Noles today, since they were the team we last lost to. They gotta lose sometime, right? But not at home, not today.

    Seriously, Kimberli, I am glad you feel better and from my experience, it should get better each day. I am keeping a little journal daily to track when and what meds I take (helpful for chemo brain in the days when I take more meds) and I also have a little numerical scale of 1 (don't want to get out of bed) to 5 (what chemo?) and the last week has been all 5's, and I hope the same goes for you. I had 2's my first week, 3's and 4's the second week. I'm just adjusting my expectations now, but still trying to get a little fresh air and exercise even on the worst days. We are blessed in Florida to be able to do that, and thank goodness it isn't as hot as in summer.

    My info said that any non-dehydrating liquid counts toward hydration (caffeine and alcohol don't count), so I would think ginger ale would work. I have always felt better after drinking lots of water, and adding electrolytes is also helpful for me. I use a very diluted powdered gatorade (no football jokes!), but Bonnie has posted several homemade recipes that will also work for those who don't like commercial products. Gatorade has always gotten me through tough hikes, and this is the toughest!

    Hope you all are feeling better. Go Noles!

  • Shayne36
    Shayne36 Member Posts: 15
    edited November 2014

    ok thx I went today and she recommended Claritin and ibuprofen. So far so good.

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