Chemo doable?

24

Comments

  • Feelingalone74
    Feelingalone74 Member Posts: 243

    It's easier once it starts

    Sounds crazy to say but the apprehension leading up to it is hard because you don't know how you're going to feel. You've had so much good advice here and are better prepared than many are.

    I had five weeks of concurrent radiation and low dose Carboplatin and Taxol, then a couple of weeks off and six more treatments of full dose Carbo/Taxol, three weeks apart.  During that time I was able to keep my 2 year old grandbaby twice a week and keep up with the laundry and most of the housework and cooking, as well as my volunteer work at church.  My husband was great about picking up something if I didn't want to cook. 

    Some things were a pain to eat with plastic utensils so I might make it into a sandwich so I could eat with my hands.  (Did they advise you to eat with plastic utensils to help avoid the metallic taste that some people get from the platinum drugs?)  There may be things you absolutely crave and other things you just don't want to eat for a while.

    The Neulasta gave me a lot of bone pain the first time and I said I wasn't sure if I was going to do that again.  I meant the Neulasta but my  husband thought I meant the chemo and got kind of agitated.  But I did and it was better the rest of the time.  I added Benadryl to the Claritin and that helped a lot.

    Hang in there!

    Thanks Friday's Child! I do

    Thanks Friday's Child! I do feel fortunate that nurse told me of this site and for  all the valuable information from you wonderful ladies have given me to help me be better prepared. A lot of the info you all have been giving me wasnt disgust at my Center . For example using plastic forks good to know something I wasn't told or icing. 

    I'm so glad to hear that you were still able to take care of your grandchild do the housework and volunteer at church. I feel that as much as I can resume normal activity that I'm able to do will help me stay stronger and get through all of this. Hoping on my good days to be able to work still. I've been out of work since June 8th and being home all day with my wandering mind hasnt been easy. I try to stay busy though no sleep is now really catching up to me. Were continuing to work on that.

    I feel blessed to have all of u!

  • janaes
    janaes Member Posts: 799 Member
    edited July 2019 #23

    Thank you Janae! 

    Thank you Janae! 

    I too was proactive in who shopping like you. I'm so grateful to  say the Center I'm going to this wonderful local salon owner that looks closely with patients  I have been with me and she helps me try on  several weeks in match my hair color  she's very uplifting and made it a positive experience. She's a true angel! I picked it up last week. It's been in the closet since then. However I will take your suggestion to put it on around the house to get use to it.

    Michelle

    I remember it was a day at a

    I remember it was a day at a time ting with my wig too. I put it on one day and showed my kids. Eventually i was wiiing to walk to the mail box. Then drive in the car. Ya see no one would say anything durig those times. I was sure the neighbors werent going to come out. Eventually i was able to go in public.i Remember you have time with this. It took a little less than 3 weeks for mine to start falling out. Be good to yourself. Take your time. It will work for you.

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    I too am very happy with my

    I too am very happy with my new soft salt and pepper short hair!  It's curlier, and I think it looks really cute.  It started to come in about a month after my last chemo.  I haven't ever had hair this short, but I like it this way!  No care required, and crawl stroke is much easier, because no curtain of wet hair in my face.

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    If you are having 5 weeks of

    If you are having 5 weeks of radiation, they must be doing pelvic external.  Start a probiotic (someone told me Culturelle, someone else mentioned one that a Naturopath told her about) daily, a week before you start the radiation and continue it through the radiation.  It appears to have some protective effect on the gastrointestinal tract during radiation.  Also, if possible, schedule your radiation sessions for as late in the day as you can.  It appears that the circadian rhythm of the body makes the intestines less vulnerable to radiation damage if you have your session late in the day.

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    edited July 2019 #26
    I was trembling with anxiety

    I was trembling with anxiety the first time I went to an infusion.  I told my husband, who came with me, that I felt like a dog being taken to the vet!  It got better after that, since I knew it was doable.

    You should ask your oncologist to phone in a scrip for ondansetron (a very effective, safe anti-emetic) and pick it up BEFORE the infusion.  I did, and mine refused, saying, "You won't need it."  Well i DID need it, and I wound up having to wake up the doc on call at 1 AM to phone it in, and my wonderful husband had to drive all the way across town at 2 AM to pick it up for me.  It was one of the many reasons I wound up switching from that oncologist to another.

    I was told that those who had severe nausea with pregnancy, often have it with chemo.  That was the case with me.

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    If you just had the port

    If you just had the port placed, watch out for pain in the neck or around the collar bone, after placement.  I got a clot in my neck vein right after placement.

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    Hang in there

    Yes chemo is definitely doable. Think of it as your friend killing any cancer cells. And yes losing your hair sucks but thankfully it does grow back. I too did go and get a wig before my hair fell out to make sure it was a similar color and style. After my hair came out I really only wore it 2 - 3 times....I preferred my head scarves that I had picked up in various colors to match my outfits. When chemo is done the short hair style is really nice and easy to look after. I had very straight hair and it came back in staight as well so so much for the chemo curl for me!! Yes I did miss my pretty bob I had prior to chemo but the pixie cut also looks good. So don't despair you will have pretty hair again short or long!!! 

    The chemo side effects are managed with the drugs from your doc so make sure to get the antiemetics like zofran, compazine etc. Each cancer center will have their own school of thought regarding which drugs they will give you but again it is doable...you just become very picky about the foods you like and dislike. Interestingly I never did get that metallic taste. 

    Constipation was a real problem for me but again it is all so different for each of us. I think once you have one session under your belt you will feel much better and have a good idea of what to expect next time. For me the first week usually was my low point and then day by day I would feel better until I felt my normal self again then off to do the next cycle. Definitely ice your feet, some do their hands as well (Amazon had some booties with ice packs in them that I picked up and were wonderfully easy to use). I did my feet and even with this second round of Taxol I only have some numbess in my toes which is tolerable. 

    So all the best you can do this and thankfully you have this board to hop on and vent or ask questions or just to say hi! xo

     

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    Lulu7582 said:

    Hang in there

    Yes chemo is definitely doable. Think of it as your friend killing any cancer cells. And yes losing your hair sucks but thankfully it does grow back. I too did go and get a wig before my hair fell out to make sure it was a similar color and style. After my hair came out I really only wore it 2 - 3 times....I preferred my head scarves that I had picked up in various colors to match my outfits. When chemo is done the short hair style is really nice and easy to look after. I had very straight hair and it came back in staight as well so so much for the chemo curl for me!! Yes I did miss my pretty bob I had prior to chemo but the pixie cut also looks good. So don't despair you will have pretty hair again short or long!!! 

    The chemo side effects are managed with the drugs from your doc so make sure to get the antiemetics like zofran, compazine etc. Each cancer center will have their own school of thought regarding which drugs they will give you but again it is doable...you just become very picky about the foods you like and dislike. Interestingly I never did get that metallic taste. 

    Constipation was a real problem for me but again it is all so different for each of us. I think once you have one session under your belt you will feel much better and have a good idea of what to expect next time. For me the first week usually was my low point and then day by day I would feel better until I felt my normal self again then off to do the next cycle. Definitely ice your feet, some do their hands as well (Amazon had some booties with ice packs in them that I picked up and were wonderfully easy to use). I did my feet and even with this second round of Taxol I only have some numbess in my toes which is tolerable. 

    So all the best you can do this and thankfully you have this board to hop on and vent or ask questions or just to say hi! xo

     

    I didn't get the metallic

    I didn't get the metallic taste either, but I got a weird, off sweetish taste. Not pleasant sweet,  sort of like fruit gone off. Took me a while to realize it was the chemo, because it wasn't metallic. Affected both food and water. I found a lot of little side effects that that they like to say, oh that's not chemo. But when it happens during the week after chemo, goes away for the next 2 weeks, then  recurs x6, it's obvious. Weird random pains all over (not bone pain), hiccups, that odd taste, weird vison thing (like a migraine aura). And depression/hopelessness too ... seems likea normal cancer thing, bur it was totally cyclical with chemo. I'm sure I'm forgetting more.

  • Fridays Child
    Fridays Child Member Posts: 277 Member
    LisaPizza said:

    I didn't get the metallic

    I didn't get the metallic taste either, but I got a weird, off sweetish taste. Not pleasant sweet,  sort of like fruit gone off. Took me a while to realize it was the chemo, because it wasn't metallic. Affected both food and water. I found a lot of little side effects that that they like to say, oh that's not chemo. But when it happens during the week after chemo, goes away for the next 2 weeks, then  recurs x6, it's obvious. Weird random pains all over (not bone pain), hiccups, that odd taste, weird vison thing (like a migraine aura). And depression/hopelessness too ... seems likea normal cancer thing, bur it was totally cyclical with chemo. I'm sure I'm forgetting more.

    Odd effects during chemo

    No metallic taste for me, either.  I used the plasticware instead of metal, but I did once pick up my husband's metal cup without thinking and drink from it.  Fortunately it didn't cause any trouble.  One of the nurses said not everyone gets it, but once it activates it tends to persist throughout chemo. I did have some weird taste preferences and hiccups, and the vision thing, too, but that wasn't very often.

    What I noticed with the pains - mostly once I went on full dose, so I don't know if I should blame the chemo or the Neulasta - was that it was most intense in joints that had been injuriced at some point in the past, even if they hadn't bothered me in years.

  • jan9wils
    jan9wils Member Posts: 202 Member
    MAbound said:

    B Vitamins

    My gyn oncologist told me to take a B complex vitamin but gave me no suggestions regarding dosages or brands. I looked into it some more and decided to just go with B12 rather than a complex that also contained Folate and B6.

    I had a subscription to consumerlab.com at the time which is like Consumer Reports, but tests supplements instead. It's the best source for unbiased information because they are supported by subscriptions rather than manufacturerers. I went with B12 because there is no upper tolerable limit taking it whereas it's possible to take too much Folate and B6. Too much can actually cause neuropathy and you need to include what you get in foods you eat in how much you are taking.

    B12 comes in two forms in the body: active and inactive. Cancer, surgery, age, chemo, certain drugs like Metformin or antacids either reduce the amount of B12 we can absorb from food or convert as much as 80% of active B12 into its inactive form. Current laboratory tests measure both together without differentiating between them, so testing won't really tell you if you have a deficit or not. You probably do and hence the need to supplement. It doesn't prevent neuropathy by itself, but it is important to the myelin sheath that protects your nerves. 

    What dose to take? I get into trouble with the censors when I say what I took because they consider that giving medical advice. Ask your doctor or a pharmacist what he suggests as a dosage to aim for or subscribe to consumerlab.com and they'll tell you dosages there. You are going to be reading a lot about supplements as you go along, so you may find that very helpful for at least a year.  Your body (if your kidneys are working right) gets rid of whatever B12 it can't use, so it's relatively safe to take. The sublingual tablets are the best absorbed form, so always look for those.

    You can ask for a Metanx

    You can ask for a Metanx prescription. My study doctor prescribed it for me two months ago (I already have neuropathy) and it has helped me better than otc B12. So much so that I haven't had the burning knives sensation since being on it. MA Bound, you always have such clear and helpful suggestions and experience. I always learn so much reading your posts.

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    zsazsa1 said:

    If you are having 5 weeks of

    If you are having 5 weeks of radiation, they must be doing pelvic external.  Start a probiotic (someone told me Culturelle, someone else mentioned one that a Naturopath told her about) daily, a week before you start the radiation and continue it through the radiation.  It appears to have some protective effect on the gastrointestinal tract during radiation.  Also, if possible, schedule your radiation sessions for as late in the day as you can.  It appears that the circadian rhythm of the body makes the intestines less vulnerable to radiation damage if you have your session late in the day.

    Ok, good to know. Thank u!

    Ok, good to know. Thank u!

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Lulu7582 said:

    Hang in there

    Yes chemo is definitely doable. Think of it as your friend killing any cancer cells. And yes losing your hair sucks but thankfully it does grow back. I too did go and get a wig before my hair fell out to make sure it was a similar color and style. After my hair came out I really only wore it 2 - 3 times....I preferred my head scarves that I had picked up in various colors to match my outfits. When chemo is done the short hair style is really nice and easy to look after. I had very straight hair and it came back in staight as well so so much for the chemo curl for me!! Yes I did miss my pretty bob I had prior to chemo but the pixie cut also looks good. So don't despair you will have pretty hair again short or long!!! 

    The chemo side effects are managed with the drugs from your doc so make sure to get the antiemetics like zofran, compazine etc. Each cancer center will have their own school of thought regarding which drugs they will give you but again it is doable...you just become very picky about the foods you like and dislike. Interestingly I never did get that metallic taste. 

    Constipation was a real problem for me but again it is all so different for each of us. I think once you have one session under your belt you will feel much better and have a good idea of what to expect next time. For me the first week usually was my low point and then day by day I would feel better until I felt my normal self again then off to do the next cycle. Definitely ice your feet, some do their hands as well (Amazon had some booties with ice packs in them that I picked up and were wonderfully easy to use). I did my feet and even with this second round of Taxol I only have some numbess in my toes which is tolerable. 

    So all the best you can do this and thankfully you have this board to hop on and vent or ask questions or just to say hi! xo

     

    Thank u so much Lulu for the

    Thank u so much Lulu for the encouragement and suggestions! I so appreciate all of u and I'm so happy to have u all for support , ask questions and yes to vent.

    You ladies are the best

    Michelle 

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    LisaPizza said:

    I didn't get the metallic

    I didn't get the metallic taste either, but I got a weird, off sweetish taste. Not pleasant sweet,  sort of like fruit gone off. Took me a while to realize it was the chemo, because it wasn't metallic. Affected both food and water. I found a lot of little side effects that that they like to say, oh that's not chemo. But when it happens during the week after chemo, goes away for the next 2 weeks, then  recurs x6, it's obvious. Weird random pains all over (not bone pain), hiccups, that odd taste, weird vison thing (like a migraine aura). And depression/hopelessness too ... seems likea normal cancer thing, bur it was totally cyclical with chemo. I'm sure I'm forgetting more.

    Thank u for the info

    Thank u for the info LisaPizza and Fridays Child. I'll be sure to use plasticware and none metal cups.

    Hoping the depression doesnt get the best of me. I'm praying for lil or no side effects as I know the more usual routine I have the better I'll be able to cope with treatment.  Tine will tell

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Lulu7582 said:

    Hang in there

    Yes chemo is definitely doable. Think of it as your friend killing any cancer cells. And yes losing your hair sucks but thankfully it does grow back. I too did go and get a wig before my hair fell out to make sure it was a similar color and style. After my hair came out I really only wore it 2 - 3 times....I preferred my head scarves that I had picked up in various colors to match my outfits. When chemo is done the short hair style is really nice and easy to look after. I had very straight hair and it came back in staight as well so so much for the chemo curl for me!! Yes I did miss my pretty bob I had prior to chemo but the pixie cut also looks good. So don't despair you will have pretty hair again short or long!!! 

    The chemo side effects are managed with the drugs from your doc so make sure to get the antiemetics like zofran, compazine etc. Each cancer center will have their own school of thought regarding which drugs they will give you but again it is doable...you just become very picky about the foods you like and dislike. Interestingly I never did get that metallic taste. 

    Constipation was a real problem for me but again it is all so different for each of us. I think once you have one session under your belt you will feel much better and have a good idea of what to expect next time. For me the first week usually was my low point and then day by day I would feel better until I felt my normal self again then off to do the next cycle. Definitely ice your feet, some do their hands as well (Amazon had some booties with ice packs in them that I picked up and were wonderfully easy to use). I did my feet and even with this second round of Taxol I only have some numbess in my toes which is tolerable. 

    So all the best you can do this and thankfully you have this board to hop on and vent or ask questions or just to say hi! xo

     

    Thanks so much Lulu!

    Thanks so much Lulu!

    I told my husband your advice that I needed to think of chemo as my friend . He agrees! I hate that it might "beat" my body up i but glad that in the process it will get of the bad cells and as my treatment begins I need to keep that focus.

    I'm definitely going to ice though my center doesnt have high stock in this I said I would like to and they said they'll note it in my chart that I'm requesting ice be provided.

    Thank u for saying my hair will be pretty short or long!!!I'm keeping my fingers crossed when the time comes for it to grow back that it at least grows and grows in my current color and not gray or white as I'm only 44. Any hair will be good though. 

    1st Treatment is 4 days away I'm going to say all weekend ITS DOABLE ITS DOABLE! 

    So grateful for this board and u ladies!

    I hope you are feeling well!

    P.S. I bet you look adorable with your pixie hairstyle!!!

    Hugs!

    Michelle 

  • janaes
    janaes Member Posts: 799 Member

    Thanks so much Lulu!

    Thanks so much Lulu!

    I told my husband your advice that I needed to think of chemo as my friend . He agrees! I hate that it might "beat" my body up i but glad that in the process it will get of the bad cells and as my treatment begins I need to keep that focus.

    I'm definitely going to ice though my center doesnt have high stock in this I said I would like to and they said they'll note it in my chart that I'm requesting ice be provided.

    Thank u for saying my hair will be pretty short or long!!!I'm keeping my fingers crossed when the time comes for it to grow back that it at least grows and grows in my current color and not gray or white as I'm only 44. Any hair will be good though. 

    1st Treatment is 4 days away I'm going to say all weekend ITS DOABLE ITS DOABLE! 

    So grateful for this board and u ladies!

    I hope you are feeling well!

    P.S. I bet you look adorable with your pixie hairstyle!!!

    Hugs!

    Michelle 

    Feelingalone, I totally know

    Feelingalone, I totally know how you feel when you say you dont want to have grey or white at 44. I had a little grey in my hair before treatment but not alot.  Hopefully yours doesnt but when mine came back grey i felt 60 years old or more. I colored my hair before i took my wig off.  The good news is since it has grown back I've only colored it a few times. Im not sure exactly why but my hair hasnt been that grey since it first started coming in about october three years ago. I   My hair doesnt make me feel 60 anymore.

  • Fridays Child
    Fridays Child Member Posts: 277 Member
    Someone told me that hair

    Someone told me that hair might come in white at first because the hair starts growing before the pigment "wakes up."

  • Feelingalone74
    Feelingalone74 Member Posts: 243

    There is no harm in icing.

    I know that the icing is not always an accepted treatment, but they do not live with the neuropathy that comes from chemo. Mostly I think that it is an incovenience for them, and they don't want to be held responsible for any neuropathy you might get even though you iced. My take was that it is only ice, (not unlike the icing I have done with my feet for plantar fascitis, three times a day for months, but it did work to get rid of my inflammation) if I can limit the amount of damage done by the chemo with such a simple and cheap solution, WHY WOULD ANYONE NOT DO THIS! If you still get neuropathy you know you did everything possible to forestall it. Reading other women's stories about their neuropathy, some unable to wear shoes, pick up items, button their clothes, and dealing with lifelong pain was enough for me. I did not know about icing for the 1st chemo and immediately had it in my hands and feet. I iced after that and I never got worse, and luckily 90% of what I did have is gone. Still have a few foot tingles but no big deal. Those life long debilitating side effects might be avoided or reduced. A win win.  Good luck!

    Thanks Bluebird, I will

    Thanks Bluebird, I will definitely be politely persistent about icing during treatment. Do I need to ice when I get home too?

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    janaes said:

    Feelingalone, I totally know

    Feelingalone, I totally know how you feel when you say you dont want to have grey or white at 44. I had a little grey in my hair before treatment but not alot.  Hopefully yours doesnt but when mine came back grey i felt 60 years old or more. I colored my hair before i took my wig off.  The good news is since it has grown back I've only colored it a few times. Im not sure exactly why but my hair hasnt been that grey since it first started coming in about october three years ago. I   My hair doesnt make me feel 60 anymore.

    That's great news janaes .

    That's great news janaes . Dealing with grey or white at 1st will be more tolerable if it happens knowing down the road I can color it.

    I bet your hair looks great!

  • Feelingalone74
    Feelingalone74 Member Posts: 243

    Someone told me that hair

    Someone told me that hair might come in white at first because the hair starts growing before the pigment "wakes up."

    Makes sense Fridayschild 

    Makes sense Fridayschild 

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    zsazsa1 said:

    If you are having 5 weeks of

    If you are having 5 weeks of radiation, they must be doing pelvic external.  Start a probiotic (someone told me Culturelle, someone else mentioned one that a Naturopath told her about) daily, a week before you start the radiation and continue it through the radiation.  It appears to have some protective effect on the gastrointestinal tract during radiation.  Also, if possible, schedule your radiation sessions for as late in the day as you can.  It appears that the circadian rhythm of the body makes the intestines less vulnerable to radiation damage if you have your session late in the day.

    Thanks zsazsa1, yes pelvic

    Thanks zsazsa1, yes pelvic radiation.  Ok . I'll put Culturelle in my notes.