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Chemo doable?

Feelingalone74
Posts: 187
Joined: Jun 2019

I will be starting treatment soon.  I keep hearing the inspiring message that chemo is doable but I also hear so much of the side effects.

Many have said to ice hands and feet during treatment.  Ice packs? Bucket of ice?

Dealing with anxiety of this whole traumatic ordeal?

zsazsa1
Posts: 314
Joined: Oct 2018

You are NOT alone!  I was absolutely terrified before chemo, but it was not that horrible to get through.  Definitely ice your hands and feet.  What I wound up doing was keeping my hands and feet immersed in ice water during the infusion, with a heating pad on my mid-section to stay warm.  What I wished I had done was put cold packs UNDER the icewater box my feet were in, because my feet rested on the bottom of the box, and the ice water didn't get to the soles of my feet when I dozed off. I wound up with a little bit of numbness on the ball of my left foot, but that was it.

Drink a TON of water right before, during, and right after the infusion - for a day or two after - to wash it through your kidneys.

Bring a helper, to keep replenishing ice when you fall asleep from the Benadryl, as you surely will.

Other people have used ice packs/ice gloves/ice booties.

Ask us questions!  Those of us who have been through it can tell you what we found helpful.  There was a lot of useful info that I got here, that I didn't get from the oncologist's staff.

Do you have a port in?

Feelingalone74
Posts: 187
Joined: Jun 2019

Zsazsa1, thanks so much for all those helpful tips! And thanks for saying I'm not alone! Im definitely grateful to be surrounded by all of everyones support on here.

I'm  surprised this isnt something that they automatically do when getting treatment.  I said something to the nurse during my initial consultation earlier this week and she said she'd put it in my chart that I was requesting ice during the infusion.  So thankful for all the help of u ladies that have found what works best to help minimize complications. Say send to bring cards or tablet or games to pass the time but then I won't be icing. Does this need to be done the entire time? 

I'm an avid water drinker so that part shouldn't be a problem. I'll guzzle myvthe gallons if need be. LOL

Relieved to hear it's not as horrible as I anticipate. I'm having such anxiety. 

Next Thursday they will place the port....that makes me very nervous too 

Did u have 1? How uncomfortable is it?

MAbound
Posts: 854
Joined: Jun 2016

I was at three different infusion locations and they all had tvs to pass the time. You get benedryl IV as part of the drugs and that will likely make you a bit drowsy. They have comfy recliner chairs and blankets, so its real easy to take a nap. If you are icing your hands, you really won't be able to read or play games. Listening to music is doable, though. 

Feelingalone74
Posts: 187
Joined: Jun 2019

Zsazsa ,  thank you so much for letting me know that it's not as horrible as I am anticipating. I will take all of your suggestions for sure to help minimize any complications! I am getting the port placed in next Thursday.

Hugs

MAbound
Posts: 854
Joined: Jun 2016

Being prepared will help you get through chemo. Keep reading threads here for tips on getting through chemo.

I iced my hands and feet using slippers and mittens I got on Amazon. You need to ask how long your infusion of the chemo drugs will be because you need enough pairs to get you through that plus the 20 minutes before and after the infusion starts and ends. They stay cold about 40-45 minutes each pair. I needed 4 pairs each of the mittens and slippers.

I have a chest freezer that I kept them cold in to use between infusions for pain relief (I didn't have them until my 2nd infusion and got terrible neuropathy from the 1st infusion). I loaded them into a cooler with dry ice to keep them cold on infusion days. The dry ice made them almost unbearably cold, so I switched to recular ice which worked just fine. 

It's a hassle to lug this stuff in with you, make changes, and manuever to a bathroom (having an IV in will make you need to pee!), so definitely try to have a helper there with you. It's worth the hassle of doing this to avoid having to live with neuropathy.

Besides the icing equipment, take some food and drink with you. They want you to eat during infusions. I took yogurt and a PB & J sandwich. The chemo room will probably have coffee, tea, and water to drink and people often bring in cookies, muffins, or doughnuts to share. Infusion day itself is usually a rather pleasant day.

Talk to your doctor about how he wants you to handle constipation during chemo. Chemo drugs are neurotoxic which is why neuropathy is a big concern, but they also really impact the digestive nerves so you need to have a regimen in place to minimize constipation. It's often not just drinking at least 2 qts of water/day, but taking something like Miralax preventively and eating a low fiber diet. 

If your doctor hasn't said anything to you about supplements you are or aren't taking, talk to him/her about them. Most want you to take B12 or a B complex and to avoid antioxidents that would reduce the effectiveness of the chemo you are getting. That especially includes fish oil. Chemo drugs and radiation are designed to go after cancer cells when they are at their most active and you want to save taking anti-cancer supplements for when chemo and radiation is over.

Your entire digestive tract is going to be sensitive to having chemo, so there is a posibility of getting mouth sores during chemo. You can prevent that by swishing with a solution of 1 tsp. baking soda in a cup of water after eating and avoiding spicey (no pepper!) or highly acidic foods such as tomatoes and citrus. 

Your taste buds will probably be off, too, and that is why many lose their appetite during chemo. One thing that many of us find tastes really good and helps with any burning sensation in our throat is watermelon. It's good to keep that on hand during chemo, but don't forget that you also really need protein to support your immune system and blood cell recovery during all of this. It's hard to eat meat, but yogurt, cheese, and protein drinks seem to be the easiest sources. 

Nausea can sometimes be a problem, but one that most doctors have a good handle on these days with what they give us before, during, and after infusions. One thing to be aware of is that sometimes what you think may be nausea may actually be heart burn from the chemo. It's a burning pain in your upper esophagus, but it doesn't come up from your stomach like heartburn usually does. It isn't associated with food in your stomach, either. If that happens, call your chemo nurse to ask about which antacid they recommend. Pepcid AC really helped me with that.

The steroids they have you take just before, during, and after an infusion will give both your appetite and energy a good boost, so enjoy that. The effects of chemo usually hit around the 2nd or 3rd day after so be prepared for that. It helps if you can time your infusions so that the worst of the effects occur on the weekend when there are hopefully fewer demands on you and help is around. The fatigue you get hit with will get progressively more dramatic with each infusion, so plan for that, too. Don't fight it, lots of rest and fluids is the key to getting through this just like it is for the flu. You just have to go through it six times is all!

I think I've covered most of what you can do to be prepared, so I hope this helps. The experience is always a bit different for each of us, but you adjust as needed. 

Feelingalone74
Posts: 187
Joined: Jun 2019

MAbound, thank you so much for the plethora of information I'm going to be sure to take notes on all of this and bring it to my chemo teaching today. I can't tell you how much I appreciate all of this that you ladies are giving to me.

Feelingalone74
Posts: 187
Joined: Jun 2019

MAbound , yesterday  I  went to my chemo teaching .  Your information was spot-on much of what you included in your post is what they told me to be aware of, bringing  snacks, taking Vitamin B , steriods,, constipation ,  fatigue , eating protein, tour of infusion  room was as you described ,  they  have snacks drinks , tv sounds like they try to make you as comfortable as possible. And said I will probably sleep through much of it. Holy moly though.....the list of possible  side effects !!! I have to say listening to all the side effects makes me wonder if I can even go through a treatment but I know I need fight  to live for myself ,  son and husband. It definitely was very scary sitting there listening to her and telling me all of the information ! I know they have to tell you all the possible side effects and she kept reiterating that everyone is individual and there is no way to know how it'll affect me. Im not sure how I'll  be  able  to  put my best foot forward  and walk in there the day of treatment .  Luckily my husband  will be  there to give me the push I need!!!

Being prepared I know will help and I'm so grateful for all this first hand information that you ladies have given me will be instrumental!

I'm shocked that they told me that they do not do the ice treatment. Because all of you said that that really seems to help with minimizing the neuropathy. They said if I request I said they'll have it for me so I did

Thankfully my husband is able to take time off of work , he's been at all my appointments with me and he will be able to go all my  treatment  appointments . I'm  blessed  for that ! 

MAbound
Posts: 854
Joined: Jun 2016

It's like tv commercials for drugs...the list of possible side effects is seemingly endless and scary, but that doesn't mean that everyone gets all of them. They are just possible.

If you have any side effects, remember you should call and tell your chemo nurse(s) or doctor that you are having them. They have many tricks in their bag to help you cope. You do not have to to suffer through them just because you were told they were a possibility. 

Icing isn't offered everywhere. I think the problem is that there isn't money in studying its efficacy, so most of the support for it is from testimonials of others who've done it as you see on this board. The slippers I used were forced to be taken off of the market by the FDA because they advertized being used for chemo without study to back them up. It's a shame because they were very well made and easy to use, but Armywife's hack is a really good alternative and so much cheaper.  I think neuropathy is the biggest fear as a side effect of chemo because it can be permanent and there really isn't anything available to treat the pain of it effectively. Prevention is key, so the hassle of icing is really worth it.

Your husband sounds like a treasure! Hang in there!

Feelingalone74
Posts: 187
Joined: Jun 2019

Thank you Mabound he definitely is a treasure.  I'd be lost without him for sure!

I was told like u suggested to get B12 or B complex. Any differences? 

Yes , you're right about the side effects with all drugs/meds. The TV commercials definitely depict that.

I have to remember like u said POSSIBLE. 

I will definitely keep a close eye on my body and call right away if something doesnt feel right.

Thank you again.

Warmly, Michelle 

MAbound
Posts: 854
Joined: Jun 2016

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.

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jan9wils
Posts: 56
Joined: Mar 2017

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
Posts: 187
Joined: Jun 2019

Mabound, u mentioned citrus and tomatoes. 

Will I be able to est pizza and spaghetti sauce?

MAbound
Posts: 854
Joined: Jun 2016

It's really up to you if you want to try eating those foods. I was told to avoid spicey and acidic foods before I started chemo, especially pepper, cumin, tomatoes, and citrus. That seemed to wipe out so much of what I would normally eat because I like lots of pepper on things and I was worried, but it didn't matter because I really wasn't eating much besides yogurt, chicken or turkey, green beans, and watermelon anyway. My appetite went bye-bye and anything with flour in it just didn't taste right to me. Other's have a different experience and you won't really know what does or doesn't work for you until you are in the midst of it. The thing with tomatoes is that because they are a high acid food they are the most likely to cause you problems you want to avoid (like sores and painful heartburn). Swishing will help protect your mouth, but I don't think it would help with the rest of your digestive tract. 

MAbound
Posts: 854
Joined: Jun 2016

It sounds odd to eat a low fiber diet to prevent constipation because we are usually told that eating fiber helps prevent it. Fiber stimulates bowel movements by causing bulk to stimulate a movement. When we are on chemo, however, our digestive nerves are impacted and bulking can instead cause a blockage. 

Miralax is often the go-to recommendation because it draws water from the body to soften stool so it passes with less effort and prevents bulking that could become a blockage. You really need to drink a lot of water throughout chemo and not just around infusion days. You'll only have to get constipated once during chemo to appreciate that! There's a lot of variation between us as to how big a deal constipation is during chemo, but it really helps to have a plan in place to keep it from ever becoming a problem.

Feelingalone74
Posts: 187
Joined: Jun 2019

MAbound, ok good yo know about that as well

Hugs 

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

They are all somewhat differant. Mine had ice paks they offered me. I kept my feet on them more than my hands but i do get cold easily, maybe that helps? lol. I have very mild numbness in 3 of my toes but it is getting better. My place had snacks and drinks and hot water for tea all available for the patients. They instruct you to be sure to eat breakfast and also bring a lunch or have your helper person go get something. The infusion bags were on one of those holders with wheels so it was easy to get up and walk around and go to the bathroom. Warmed blankets are always available. It is kind of odd that infusion day is kind of pleasant, and I always felt real good the day after, then icky for 2 or 3 days.Everyone is differant and all places are differant, so it is good to have the information on here from other people. [Content removed by CSN Support Team] I agree on the watermelon, I also liked V-8 juice, ginger ale, and my lifesaver was zoi brand greek yogurt in the honey flavor. On the days I felt icky, I could still eat soup. Also, constipation is real!! I did have a port, it is not a big deal to get it put in, most people don't have much trouble with it. The anticipation of it is much worse than actually having it. Lots of people then keep it for a long time, but I was so done with it when chemo was finished, my Gyn/Onc/surgeon said I could get it out, she did that in her office at the cancer center.

 

Feelingalone74
Posts: 187
Joined: Jun 2019

Thanks Ribbons for all the suggestions on food and constipation. The center that I am going to sounds much like yours where they provide snacks warm blankets , said to eat breakfast but they'll provide lunch for my husband and I. And anything else to make you as comfortable as possible.  They will give me ice paks per my request. Should I just rest my hands and feet on them?

Not looking forward to those icky days but hoping I can be strong! 

Relieved that the port isnt as bad as I anticipate!

Hugs, Michelle 

Feelingalone74
Posts: 187
Joined: Jun 2019

Getting overly anxious as my treatment will begin one week from tomorrow . I dont know how I'm ever going to do it and also contemplating whether or not even want to go through it with all the possible side effects. I know that there's no way of knowing which if any that I'll get but wondering how or if I'll have any quality of life if it does such a number on my body. I know of I want to live longer and have a change at life I must do the treatment.  Just really scared! 

I don't want to give up because I cant think to bare the loss my son and husband as well as many others will endure but wondering how I  can survive such an aggressive treatment. My treatment is going to be soooooo long 

2 rounds of carboplatin and taxol 3 weeks apart 

Followed by 5 weeks of 5 days a week radiation combined with 1 day cisplatin. 

Followed by 2 more rounds of carboplatin and taxol.

Also I'm extremely sad by my 45th my beautiful long blonde hair will be gone.  I suffered low self esteem most of my life and this is so devastating to me that finally I'm in a good spot and it's all going to change drastically.  My husband tells me I will be beautiful to him no matter what but I know that unless I feel beautiful it won't matter what he or anyone else says. Ugh this is so hard! It just friggin sucks!!!

Fridays Child
Posts: 43
Joined: Jul 2019

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!

Feelingalone74
Posts: 187
Joined: Jun 2019

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
Posts: 752
Joined: May 2016

As i read this today it made me think about what i did. I remember thinking about loosing my hair before i started chemo. This of course would be my second time loosing my hair. I remember that i loved my wig i got during my first cancer. Some people did this different but i went out before treatment and bought me a wig that i liked. I took my sister and dad and step mom. I found one i liked. The lady there let me try a few on and that was great.  When i finally got it it i would put it on every once in a while just to get used to it. That really helped me to get motivated. I knew i could still be beatiful. Just an idea. Some people like to wait tell after they loose their hair to buy the wig but i needrd motivation. Try to enjoy your week before you start. I know thats easier said than done. I will be thinking about you

janae

Feelingalone74
Posts: 187
Joined: Jun 2019

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

janaes
Posts: 752
Joined: May 2016

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.

Feelingalone74
Posts: 187
Joined: Jun 2019

Hair started falling slowly out earlier this week . Week 2 after 1st treatment. Now today falling out in handfuls  :-(

I know I  need to just cut it but I can't.  

I think I probably should do as u did and wear my wig around the house this weekend to get use to while my son is gone for most of the weekend. I almost wore it to training at my job so they all thought my hair grew since I was there last in June and so when I finally can go back to work after treatment I'd look like I did today had I worn it.

So hard! 

 

Armywife
Posts: 281
Joined: Feb 2018

Hang in there.  I remember that day vividly.  I went in the bathroom with the scissors, and put on some praise music, and I just. couldn't. do it.  I had vowed that I wouldn't let my husband see me without hair (totally unrealistic goal), and when he came home from work for lunch I was still in there.  He came in, took the scissors and clippers, and gave me a buzz cut.  Then he kissed the top of my head and said I looked cute.  I believe it was the sweetest moment of our marriage, and I'll remember it forever.  Then my dear friend Jenn came over with a bottle of wine and said, "This will not be known forever as the day Wendy lost her hair - this will be known as the day we drank in the middle of the afternoon."  (Neither of us drinks more than about a glass of wine a year.)  So we day-drank a toast to the chemo working its magic, and things got a lot easier after that.  I wore the wig through the Texas summer and nearly into the next Texas summer.  So thankful that God has allowed me time for it all to grow back in!

Feelingalone74
Posts: 187
Joined: Jun 2019

What a great friend u have Armywife and a  very sweet husband! 

My hair has been shedding all week. At least it has  been slow process. However,  my long hair is in a matted tat nest today. I just want to go into the bathroom a d start cutting it off as I know there's nothing I can do with but say it's  time.an acquaintance has a hair salon at her house. She's going to cut it this afternoon. I'm extremely sad about this ! 

It's hot here where I live in will be even hotter next week but my wig will be on my head no matter what. I'm so hoping my son thinks I look like his mom still.

I pray I can be strong ! 

Fridays Child
Posts: 43
Joined: Jul 2019

My hair had been thinning while I was on low dose chemo so I knew when I went to the full dose it would be time.  It was springtime and I was outside running my fingers through my hair and just letting it fly, figuring the birds could use it in their nests.  I took the scissors to it and cut a bunch of it off, and then my husband cut the rest real short with the clippers.  At some point during the summer (and no, I didn't always wear something on my head in the house) he looked at me and said, "You sure do have a pretty head!" I really appreciated that!  My son usually keeps his real short in the summer and I think every time he came over he had just buzzed it about as short as it would go.

We all choose our way to handle the hair loss and you will find what works for you.  My eyelashes and eyebrows were the last to go - maybe after the fifth full dose treatment - and I thought it was weirder to have no eyelashes than no hair, but they started coming back fairly soon.  I tried drawing on my eyebrows but the weather was hot and they would just melt away so I gave up.  Good luck!

janaes
Posts: 752
Joined: May 2016

Feelingalone,

I remember when my hair started falling out. I went to church when i first noticed with my regular hair. I remember telling my kids before we left to not touch my hair. I survived. But like yours slowly but surely more came out. I didnt cut my hair for a while. Some people do but i just couldnt at first. I will tell you how finally was wearing my wig in public full time. It was about rwo weeks from first treatment. I was headed ti Idaho in a few days. Just before my second treatment. It was about a 4 hour drive and was going to see extended family. I only see these guys once a year if that. Any ways i was worried about my hair falling out too much while i was there (Was going to be there i think 2 and a half days). Didnt want to risk looking like a bald woman there so i made the day i left for Idaho my offitial day of wearing my wig in public full time. As i said before i wore it a little before that. But that day was offitial for me.

I didnt cut my hair then i just put it in a pony tail. It took a while longer to cut mine short.

You will do great. Take your time. You will know when its right for you.

Feelingalone74
Posts: 187
Joined: Jun 2019

 

 Jane,

It sounds like  he chose the right time to start wearing your wig  I bet it looked beautiful on you!

mine  slowly came out after the second week of treatment as well. It was shedding everywhere I was determined to keep it as long as I could. This past Friday evening it was a dry hay matted mess. There was no way I'd ever beable to brush it again.  So hair stylist around the corner has Salon in her house. I  went with my cousin and she to held my hand and together the three of us did what I knew  had to done.

I bought this headband from headcovers unlimited that has a ponytail in little side wisps to wear under a baseball cap. So that's what I left it on my head and work for the first few days. These are days would often throw a baseball cap on with a ponytail so I think this looks natural to my son. yesterday I had many yesterday I had many errands to run as I prepare for my next treatment tomorrow so I tell that my wake and how's the door I went. I text my son before he got home to give him a heads-up that I would be wearing a wig he didnt say much only I asked it looks like my hair doesn't it and he said yes. Not sure if that's how he really feels.Hoping it brings him comfort seeing me with it on rather than bald which I'll never let him experience. 

Warmly,  Michelle 

janaes
Posts: 752
Joined: May 2016

Feeling alone i thought about doing the hat with hair thing, but never got around to it. I had an old wig from my first cancer and was going to cut it up an glue it to a hat. I bet you look great. Im so proud of you.  Im sure your son will do great too. Keep on going my friend. Good luck for your second chemo appointment. 

barnyardgal
Posts: 208
Joined: Oct 2017

It is hard to see the hair go. I was sure once my hair started to grow I would go for my long hair again. But I found I look really good with shorter hair. I had long hair since high school and never would have tried a shorter cut. But I love it! 

Due to allergies I had a different chemo. I was scared, but it all worked out fine . Chemo isn't fun but it's very doable. 

Feelingalone74
Posts: 187
Joined: Jun 2019

Barnyardgal, I bet you u look great with your shorter hairstyle!

Thanks for reminding me like others that chemo is doable!

zsazsa1
Posts: 314
Joined: Oct 2018

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
Posts: 314
Joined: Oct 2018

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.

Feelingalone74
Posts: 187
Joined: Jun 2019

Ok, good to know. Thank u!

Feelingalone74
Posts: 187
Joined: Jun 2019

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

zsazsa1
Posts: 314
Joined: Oct 2018

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
Posts: 314
Joined: Oct 2018

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.

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Lulu7582
Posts: 112
Joined: Jun 2018

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's picture
LisaPizza
Posts: 208
Joined: Feb 2018

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
Posts: 43
Joined: Jul 2019

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.

Feelingalone74
Posts: 187
Joined: Jun 2019

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
Posts: 187
Joined: Jun 2019

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
Posts: 187
Joined: Jun 2019

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 

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

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!

Feelingalone74
Posts: 187
Joined: Jun 2019

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

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I posted an article with links that might help explain the icing and how it has worked. 

janaes
Posts: 752
Joined: May 2016

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.

Feelingalone74
Posts: 187
Joined: Jun 2019

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!

Fridays Child
Posts: 43
Joined: Jul 2019

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

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