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Tips for getting through chemotherapy

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Comments

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2011
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    A bump!

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2011
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    Another bump!

  • oldtimer35
    oldtimer35 Member Posts: 7
    edited April 2011
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    I am posting this for my daughter who was diagnosed with IDC, 5 days after her 37th birthday. I have been reading everything I can on these message boards for the last 2 months, trying to find ways to help and also learn what to expect. She is currently taking Chemo, having taken 3 rounds so far, with her next session on this coming Friday. She suffers severly for 3-4 days after her Neulesta shot, barely able to get out of bed. I have read that taking Claritan helps, but I need to know what is the prefered dose and when do you start it. She is the mother of 3, with 2 still in school and a husband who is devoted to her. I'm just trying to do my part. Thanks for any help.

  • Carrol2
    Carrol2 Member Posts: 1,477
    edited April 2011
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    oldtimer35 i took a claritan the day before the day of and the day after. I don't know if it helped but i did not have any SE from the neulasta. My doctor did not know if it worked or not either but we both figured it could not hurt.
  • oldtimer35
    oldtimer35 Member Posts: 7
    edited April 2011
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    Carrol2, thanks for the answer, I will text my daughter, I have been talking to her about taking claritan and just needed to know the dose.  I hope you ladies don't mind an old man stopping in and asking questions, but my daughter doesn't have the strength to sit down and read these boards. Right now, she is just trying to get thru this first step of her treatment. Thanks

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2011
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    Bump for the April 2011 Gals!

  • Merilee
    Merilee Member Posts: 734
    edited April 2011
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    Has anyone had vitamin C infusions during chemo?

  • polamom
    polamom Member Posts: 10
    edited April 2011
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    Oldtimer, I never had to take it, but I assumed when I read the recommendation that they meant whatever dosage it tells you on the box.   You only take it once a day, even for allergies.  Until someone answers differently I'd give her the dosage on the box.  You are a wonderful father, as mine as been to me. I'm 38 now (37 when diagnosed last year).  My mom died from breast cancer several years ago so my Daddy went with me and stayed with me for my surgeries and everything.  Daddies are the best.  xoxo!!

  • polamom
    polamom Member Posts: 10
    edited April 2011
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    My tip, not sure if it has been mentioned.    Ask for lidocaine cream (some call it something that sounds like Emma-lin cream)  to numb your port area, if you have one 

    Luckily my nurses suggested I ask for it.   I felt NOTHING when I had applied this cream.  You put it on about 1 hour before you go in.  They said put a quarter size dollop on and then cover it with a piece of plastic wrap.   Awesome stuff!!!   There is no reason to have any more pain than we have to.

  • Carola32
    Carola32 Member Posts: 44
    edited April 2011
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    Hello !

    I just had to pop in and say something about the Neulasta shots. Before I started chemo in January (FEC) my oncologue told me about the risk of neutropenia (very low white blood cell count). After about 8 days (in general and note that I'm referring to treatment every three weeks) you start to feel chills, getting tired which are good indications that you have to slow down and take care. I live in Paris and go to a very good clinic, and they never even so much as whispered the word Neulasta to me. I know it exists in France, but it depends where you go.

    The thing is, if you get an infection, and more importantly fever (your immune system is not as it should) during this period (which can last more or less than a week, but again it's very personal) you have to go see a doctor. Mine told me "Be reasonable, don't take the metro at rush hour, don't hug or kiss someone who's sick and always have some desinfectant gel with you. Have a healthy diet with a lot of veggies and rice (energy), sleep well and have a good hygiene. But don't get obsessed".

    The Neulasta shots seems to have so many uncomfortable side effects that I would never touch it. I prefer to go 'natural' and boost my immune system in other ways.

    Maybe this is different for treatments on a weekly basis? Oldtimer, is your daughter getting treatment every week or every three weeks? 

    I also have something called Emla patch to put on my port area, as you desribe Polamom, one hour before the IV. It exists in the US. Works wonders.

  • coni
    coni Member Posts: 181
    edited April 2011
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    I agree with Carola30 Neaulasta is the worst, I live in Canada I got it for 4 treatments, made me so achy, and feels like you have the flu...I didnt like it, however my immune system did stay up and thank God i never got sick during chemo, my last treatment, I didnt take it, my immune system went down, but again Thank God I havent gotten sick...I have however stayed home for most of the week just incase...

    Emla Patch works great, I used it for the neaulasta, IV for MRI, CT Scan, any needles. U dont feel a thing I do put it on 1:30 to 1:15 min ahead of time...I cant stand needles so afraid of it, so I cant do with out it...they also have a cream too never used it but they tell me is the same.

  • Carrol2
    Carrol2 Member Posts: 1,477
    edited April 2011
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    I had the neulasta shot for 3 of my 4 treatments. I did not get those flu symptoms at all from it. My last tx my neutrofills were too high and my onc did not want to give me the neulasta. But my count drop very low, i did get a sore throat, no fever,  and i ended up having to come in for 3 days of neuprogen shots, which i believe is the same thing but each shot only lasts 24 hours. 

    I used a lidocaine kind of gel on my port but one time i forgot it and i was very nervous but it did not hurt at all. All I felt was the same pin prick like an IV. After my last chemo I waited about 8 weeks to get my port flushed and the nurse did have some trouble getting it going but even that did not hurt. 

  • Huskerkkc
    Huskerkkc Member Posts: 471
    edited April 2011
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    I have had the Neulasta shot for my 3 chemo treatments so far. First was the worst, achy bone pain. Could hardly walk. The pharmacist suggested the Claritan AND Aleve combo; it is not fully researched but a lot of antectdotal evidence that it seems to help. Most regimins that I've seen here on different forums match what I was told: 1 Claritan the day before the shot, 1 the day of the shot (30 minutes prior to injection if possible) and 1 the day after the shot. Also the Aleve, per the box and per what I was told was 2 per day, before, same day, following day.

    I had trouble even with the Claritan/Aleve combo but continue to take it thinking it would be much worse without. Chemo #2 was better, but I was adding pain meds (hydrocodone in my case) to help. Narcotics adds the SE of constipation, so I always took a Senacot with the first pain med dose. Chemo #3 I had very high WBC (white blood counts) which meant not only was the Neulasta working but my own cells were doing fine. I was able to ask for a half-dose to see if my body would continue to work on its own w/o the booster shot. So far SE's have been much more managable-a little achiness in knees/hips, but NOTHING like before. Now I am being very careful with germ exposure, staying away from crowds, using santizer like crazy, and am praying my WBC are still good when I do labs on Friday.

    Check with the oncologist or triage nurse. There are lots of treatments for all the SE's that come with chemo. Pain should be managed and early on. Best wishes to your daughter and blessings to you for doing all you can to help her.

  • brewster1
    brewster1 Member Posts: 3
    edited April 2011
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    We started TC in Feb.  Biggest problem was WBC of 1.4 and ANC of 100, so we were VERY careful and on antibiotics.  Took a Neulasta shot after chemo #2, and a week later, got horrible hand and foot syndrome (HFS).  I know this Isn't that unusual with Taxotere but the onc gave us dexamethasone and that was AWFUL.  Made us sad and depressed, and no desire to do anything.  While the HFS abated some, after 3 days of dexamethasone, the HFS came back again.  Anyone have any ideas?  We bought some Bag Balm, trying that plus over the counter cortisone creams.  And ice bags.  HELP!!!!

  • brewster1
    brewster1 Member Posts: 3
    edited April 2011
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    Took Claritin and Aleve before the Neulasta and it was a nonevent, some achiness, but tolerable.  May not work for everybody but try it.  Like chicken soup, cant hurt.

  • brewster1
    brewster1 Member Posts: 3
    edited April 2011
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    Oldtimer, just have her take Claritin the day before as directed on the box, as if she had allergies or a cold.

  • JeanH
    JeanH Member Posts: 132
    edited April 2011
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    Bumping for the newbies.



    Hey nico!



    Jean

  • Merilee
    Merilee Member Posts: 734
    edited April 2011
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    I am using clairitan and Tylenol.  I had a Neulasta shot on Thursday and so far so good, Fingers crossed.

  • Katarina
    Katarina Member Posts: 99
    edited April 2011
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    I'm scheduled to start Taxotere/Cytoxan chemo treatments mid May -- am I really assured to lose all my hair?  Someone said some people do and some don't but not that I care so much just curious what experience those who are using this 3rd Generation Chemo mix have experienced --- all major side effects welcome.

     And thank you to everyone who has posted solutions and tips - this has been my most valuable source of information about chemo period.

    Kat 

  • Carrol2
    Carrol2 Member Posts: 1,477
    edited April 2011
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    Katarina I had 4 treatments of TC 3 weeks apart.I am now five months out since my last treatment. I was told by three different oncologists to expect the hair to fall out. I am sorry to say. It did fall out about day 18 after the first treatment. ALl the hair on your body falls out too. I did not lose all my lashes or brows they just thinned a bit which is what i was a told to expect. But I had some strands that did not. It looked very weird but was good to have to look less bald under a hat.

    My first 2 treatments went pretty easy. I had to take steroids for 3 days and they made me really speedy and anxious but when i took ativan with it i felt a lot better. The third and fourth treatment the fatigue was really bad for a week. My fourth treatment i got a sore throat but it went away after a week or so.

    I also had thush on my tongue every time and had to use a prescription called nystatin swish and swallow and that got rid of it.

    There were a few days with headaches but aleve made them go away. There was this odd itch on my throat and chest with no rash that benedryl stopped that. Got some ridges on my nails and they peeled a little on the back, but that is almost all grown out now.

    I had the neulasta shot to keep my immunity up but my onc did not want to give it to me for my last treatment because my nerutorfills were too high. My immunity dropped and i had to come in for three days and get a neuprogen shot and it went right back up. 

    Good news is a month after my last treatment I felt fine and went on a really long hard road trip from Kansas City, MO to Corpus Christie Texas to Pittsburgh, PA and back to KC. I was totally fine for the whole thing. I had some neuropathy in my hands that started 8 weeks after chemo ended and went away after about 8 weeks.

    So I know this all doesn't sound like much fun and it isn't. The main thing is to ask questions. If you get a side effect call your oncologist or a nurse in your center and ask what you can do for it. Do not suffer any more than you need to. Call them they are expecting you to. Let them help you. 

  • Carola32
    Carola32 Member Posts: 44
    edited April 2011
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    Hello Katarina, and "welcome"!

    Guess you have a lot of information already, but here goes. I did FEC (one of the components is Cytoxan) and now Taxotere, so maybe I could help out :-)

    If your clinic doesn't offer icemitts for fingers and toes, do bring something on your own, ice really helps. For your head and mouth (chew on ice, drink smoothies, as long as it's coooold during Taxotere) it's works the same way, I lost a lot less hair thanks to the ice cap, and could have avoided mouth issues had I thought of cooling my mouth too!  I can recommend a cooling beauty mask for brows and lashes, if you have two it's even better as you can switch when the first one gets too warm. Bring some thin cotton pads though, you wouldn't want something icy directly on your lashes and eyes, you know. Please don't be afraid to ask the nurses to help you out. You are not a disturbance. Tell your doctor about your side effects, they can and will help you. 

    Taxotere is hard on your nails, imagine trying walking around in shoes if your nails fall off; I'm not saying they will of course, but you have to baby them. I use Silicium nail polish (basecoat) along with a colored nail polish, doesn't have to be black or too dark, red works fine if you're into that. Something about the light and Taxotere...Your skin and cuticles will get dry and hurt if you don't use a good cream. The simpler the better as they said at my clinic. As long as it doesn't contain parabens and too much fragrance. A friend of mine uses organic coconut oil, I use avocado oil (full of vitamine E which is good for skin) and sweet almond oil. 

    Drink, drink and drink again. I know Cytoxan makes you more or less queezy, so I wouldn't eat or drink anything I love the same day as my IV, and certainly not during :-) Be careful with what you eat, and by all means, do avoid constipation...I eat fruit (well, drink smoothies as some days my mouth hurts too much), wholegrain bread, vegetables, quinoa, drink pineapple juice, ginger... all of this organic and thouroughly brushed, so you don't get even more chemicals in you by simply trying to nourish your already weak body. No grapefruit in any form as it interacts with chemo.

    Avoid getting oedema in your legs (water) by putting your legs up whenever you're sitting or lying down, massage your feet and legs and try to move around I find helps a lot!  Your legs will hurt with Taxotere.

    I do acupuncture for my liver to be in tip top shape, as it will be very tired with your treatments. A tired liver means queezyness, and you don't need anymore of that! I drink herbal teas (not hot though) who help drain gently. If you're into alternative stuff, I got a silicea supplement from my acupuncturer,  I haven't had a headache since I started, and I really suffer from migraines normally, especially on FEC! True story Laughing So happy about that.

    I did not do Neulasta, nor would I. I prefer to stay away from crowds and such, and wash my hands more often than experience the side effects of it. Your blood counts do go up again after some days.

    I don't know how you'll feel on this molotow cocktail, but I wish you the best! And don't forget to breathe.

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited April 2011
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    Bump

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited May 2011
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    Bumping for the May 2011 chemo starters.

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited May 2011
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    Bumping up!

  • oldtimer35
    oldtimer35 Member Posts: 7
    edited May 2011
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    Thank you, ladies, for all your input.  Sorry I haven't been on here since my last post, but to answer some questions, my daughter is on a two week schedule.  The claritan worked for her nulesta shot.  She did this for two months and now she is every week on toxerell?  Not sure of the spelling, but she started last friday.  She goes to Baylor Med in Dallas, the new center they just opened.  She doesn't take the nulesta shot after these, but I don't know what or if she will have any side effects from it.  So far, she says she feels just fine.Thanks for listening.  

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited May 2011
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    Thank you, oldtimer for your post! Caritin has helped many avoid the bone pain from the nuelasta shots. Best of luck to your daughter in her treatments.

    Nico

  • JeanH
    JeanH Member Posts: 132
    edited May 2011
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    Bumping for the may chemo ladies.

    Hey to Nico - I am almost through 1 more to go!  these 2 threads helped me set up my emergency box and it was like a securty blanket - I just felt better knowing i had the stuff right there easy to find if needed. Luckily I did not need it all! 

    Additions:

    AYR saline gel for nose - helps when saline spray is not enough.

    A&D ointment - helped me with cracked at corners of mouth - had to be able to smile!

    Jean

  • Nico1012
    Nico1012 Member Posts: 1,152
    edited May 2011
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    You ROCK, JeanH ! ! ! Thanks for adding the great tips!

  • katfinn
    katfinn Member Posts: 15
    edited May 2011
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    Thanks to all of you for the great advice.  I had my first T/C treatment on 4/25/11 so today is day # 8 and while I am much better and worked today, I am still having great difficulty sleeping at night.  I've used Tylenol PM some nights (really need 2 to do the trick).  The doc prescribed Ambien but it's only the kind that gets you to sleep.  He didn't seem to want to give me the time release prescription but I'll ask about that tomorrow.

    So far, Aleve is helping with any bone pain (really just in my back at this point).  Constipation is a big problem but I'm trying different things for that and hope to have it figured out soon.  Every day brings something new.  Today it was this weird coating on the lining of my mouth.  No sores yet but does this mean that I need to crank up the Biotene more? 

    Any advice is welcome.  As you can see, it's 2:30 in the AM ... not sleeping... help!

  • Carrol2
    Carrol2 Member Posts: 1,477
    edited May 2011
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    katfinn i can't sleep either. I am 5 months since my last chemo T/C x 4. Feeling good now.

    I had the coating of the mouth and tongue it was thrush which is kind of like a yeast. My onologist gave my a  swish and swallow script called nyoxin that gets rid of it in a day or two. I got this after every tx.

    For sleeping i used ativan. It was given to me for sleep, anixiety and nausea and worked very well for all three.

    I got some mild constipation and the best thing for it was to eat some prunes for me. When I took ducolax it was too strong and i had the opposite problem for a whole day. Everyone is different.

    Bottom line is the best advice anyone can get is call you oncologist or oncology center nurse. They are expecting you to have side effects and call them. No need to suffer call and get relief and also you want to call with all your side effects  to make sure it is not anything serious.

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