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Chemo and the sun

Feelingalone74
Posts: 223
Joined: Jun 2019

Hi all, I was just wondering if when having chemo therapy do u need to avoid the sun? My appt to find out when I will begin therapy is next week and I'm sure they'll let me know but thought I'd ask here too. It's hot where I live and I'm anxious for  when I feel well enough what my limitations are going to be.

Thank you 

Jairoldi's picture
Jairoldi
Posts: 204
Joined: May 2017

Hi Feelingalone74,

I can't recall if I was told to avoid the sun but I became sun-sensitive during chemo.  One day, after being in the sun a bit, I broke out in a rash.  The doc asked me lots of quesitons- had I tried any new lotions, etc.  He said if my skin wasn't healed he would need to postpone treatment.  It didn't take me long to realize it was the sun.  From then on I kept to the shade, put up a gazebo in the yard, wore hats and some lightweight UPV arm covers.  I also got a white flouncy type cover/top to slip on when I was going outside.  It was a bit annoying but not terribly bad.

Like everything else chemo-related some things come up for some and not for others.  This, along with bone pain about 3-4 days after chemo, and losing my hair, were my bodies reaction to chemo.

Feelingalone74
Posts: 223
Joined: Jun 2019

Ok thanks for the replyJairoldi. I will definitely play it safe and avoid it as much as possible and cover up well when I have to be out. It's going to be so hard being it's summer but I definitely will do what is needed.

I'm so nervous about treatment starting in 1 week and how my body will react. It will be so hard to surrender myself to chemo treatment as right now I feel perfectly fine. But I know I have to find strength to get through it

Do u mind me asking what do they do if one gets bone pain? Does it last long?

 

Fridays Child
Posts: 55
Joined: Jul 2019

Feelingalone, they did tell me to use sunscreen whenever I went outside.  Covering up is good, too. 

For the bone pain, often they recommend Claritin.  I've heard of people using Allegra.  You might ask them if there are any antihistamines you should not use, and then choose what works well for you - if you have it, which you may not.  Benadryl worked for me. Some people get bone pain from the chemo and some get it from the Neulasta/neupogen/or whatever if you have that to keep your blood counts up. Some don't have any bone pain.  My experience was that the bone pain seemed to concentrate itself in places where I'd had prior injuries, even though it had been decades since I'd broken a bone! Hot packs helped me, but the weather was cold then.  I'm not sure I'd want or need them in the summer!

You are strong and you can do this!

 

 

Feelingalone74
Posts: 223
Joined: Jun 2019

Thanks Fridays Child for your encouragement and recommendations. I'm hoping I can stay stronger than I anticipate.

I too wear sunscreen whenever I got outside. Sounds like I definitely will need to limit myself being it's hot summer weather right now. Hating to think I will be house bound when feeling well enough. My backyard is full sun and certainly will miss my pool in this hot weather. 

Thanks for the info on bone pain.  Hoping I dont get it but certainly will take your suggestions should I.

Wishing u good health

Kddbrad
Posts: 2
Joined: May 2019

I did not find chemo to be as bad as a lot of folk.   I just listened to my body.  Rested when it said rest, drink plenty of liquids,  juice if you can, eat fruits and veggies and try to remain as stress free as possible.    Eat what your body craves not what you are used to eating, stay away from the spicy.   And remind yourself that this too shall pass!

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cmb
Posts: 358
Joined: Jan 2018

See the discussion at https://csn.cancer.org/node/314595 for information about bone pain and what worked (or didn't) for some people.

I was told by the oncologist to avoid the sun while having chemo. Not a problem for me since I don't actually like to be directly in the sun. Plus most of my treatments were in the winter and spring when I was less likely to be outside for any length of time anyway.

Feelingalone74
Posts: 223
Joined: Jun 2019

Thabk you CMB, I will check out that discussion.

Wishing you good health

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

I always try to avoid the sun anyway because I burn,  but I don't think chemo caused me any particular sun sensitivity, nor dryness, which is another thing you will hear a lot.

Feelingalone74
Posts: 223
Joined: Jun 2019

Ok, thanks Lisapizza.

I hear everyone body and skin react differently.  Anxious about what treatment will do to me.

Wishing you good health

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

were tough, but doable. Absolutely doable, but challenging. Nine months post chemo I am feeling pretty good. The psychological aspects have been much harder. Which surprised me, as I believe not enough emphasis or education is put on the longer term survival or shorter term non survival aspect of our cancer. So much is written about nausea, but not enough about   dealing emotionally with ourselves, our families, busy bodies, and those whom I really avoid, the “think positive” club. I find that they try to deny you the ability to accept your diagnosis for what it really is and think the cure is simply positive thinking. You will go through the chemo and/or radiation and be amazed at your physical ability to bounce back, but the every day emotional aspect can be much more challenging. Prepare yourself for that. I also have a son and daughter in law who never want to hear anything negative. Their attitude means I am affronted with family who never want to face the possibility I will die from this cancer. No discussion of what may be is allowed. So no deep discussion of feelings, long buried slights, or the absolute terror of dying from this cancer is allowed. That is almost worse than having no family at all. Almost to the day my one year anniversary of my diagnosis is here, I am at peace with what may come, I really live in the moment and am NED. I wish you much success in your treatment and hope the emotional aspects work for you as well. 

 

Denise

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TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

Denise,

I think many of our family members just can't face the what could happen possibilities. And, they can't really understand what we go through. No one can that hasn't been through it. This board is such a gift for us. We all get it. And, the support and ability to come here for just about everything helps close that supportive gap.

You are right, this is a subject not really discussed enough. It does get better over time. I think we come to a point where we do learn to live each day and put the what if in a box for the future - to be dealt with only if needed. At least that's how it is for me now. That doesn't mean that thoughts don't drift in and out from time to time. But, mostly I live with the possibility of a long life in mind.

Love and Hugs,

Cindi

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

With  three kids I have the full spectrum. One is totally able to accept what is going on, allows me to talk about everything and is very supportive. My son's approach is how he approaches his life, no negatives allowed, changes the subject whenever there is something the least bit unpleasant happening, is not really very supportive about my situation because I think he is just thinking it will go away if we don't talk about it. My youngest daughter is a mix of the two, she will listen but she prefers not to talk much about anything regarding the cancer. Luckily, my husband is terrific and the friends I have chosen to tell are also incredibly supportive. I have a sisterin-law who I have had to hold at arm's length because of her emotional reaction to me, plus her mother and best friend recently passed away from cancer. After the first months of surgery, treatment and recovery, I eventually settled down emotionally, and now I do the same as you. I put it into a box that I don't open as much anymore and go on with living. I am so thankful to have this board and the many supportive women as well as the informative topics and experiences that help to understand what is happening and options. I am having a bit of mild PTSD at the moment as I was diagnosed exactly one year ago, so the weather and summer season is triggering for me. This is a surprise as I would not have guessed I would be having these feelings. My ability to handle stress has also decreased in the past few weeks, different feeling than the scan anxiety that I had in May. So for me the emotional aspect has been much more difficult because the ability to cope comes and goes. Thanks for the response.

Denise 

Forherself's picture
Forherself
Posts: 182
Joined: Jan 2019

My one year surgery anniversary was yesterday.   I think about it compulsively.  I expect that it will get better over time.  But It is unvelievably hard to put it in that box.  What will be will be.  Taht was my favoite song .   Maybe it was deja vue.   

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

Surgery July 26, 2018. So this is the hot spot for me weather wise and anniversary wise. And our newest members remind me of when I was in their shoes and received wonderful support from everyone here, but it is still hard to forget my feelings, deja vue, indeed. Compared to my state of mind one year ago, I feel like the poster old lady for mental health. Now I just need to get a hammer and some nails to nail that box shut! 

Feelingalone74
Posts: 223
Joined: Jun 2019

Denise,  I'm so glad to hear that 9 months post-chemo that you're feeling pretty good! Most keep telling me the same as you that chemo is doable.. .so thankful for that and hope it holds true for me! My 1st treatment will likely begin next week.But I agree the emotional aspect is very difficult along with the uncertainties and what its. Everything does seemed to be placed on the physical role and little on  emotional roller coaster. I'm hoping physically I can get through the chemo but it's the emotional ride that I'm worried about. I know I'm going to have a very difficult time with losing my hair not looking like myself anymore  and as u said dealing with the absolute terror of dying. I know staying positive is key and tucking stuff in the other box when possible is a must but easier said than done. I too wish their was more support for the emotional challenges this poses.  It sounds like you've surrounded yourself with a good circle of support and don't let in those that might not be that helpful. I hope to do the same. I do think that it's so much harder for us going through all of this. As much as those supporting us want to cheer us on make sure we can't begin to understand what it's like emotionally.I did meet with a social worker at the center I'm going to but felt like she was more just there to listen and not offer support and guidance. . They also have a psychiatrist there that I may consider seeing to help me find strength emotionally.  

I'm so glad to hear that nine months out that you're at peace and  NEDI!!

You got this girl!

Thanks for your kind words and encouragement! 

Michelle 

 

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

In this order the effects of being diagnosed for me are: 1. Emotional distress, depression, etc. 2. Hair loss (see #1) 3. Chemo side effects 4. Surgery 5. Radiation 

Obviously, the shorter immediate physical effects of surgery, radiation and chemo were over quickly. The hair grew back, but I was bald or mostly hairless for 5-6 months. The emotional side is a daily struggle as we all come to terms with what is happening and what may happen. I can heal from surgery, chemo and radiation, I can grow my hair back, but the daily emotional toll all of the treatment, side effects and effort putting on a happy, positive face for others has been very difficult for me. I do consider myself very, very lucky to have this cancer, instead of others that are instant death sentences, difficult treatment, and debiliatating side effects. I consider myself lucky to have caught it so soon. I consider myself lucky because of the easy surgery, few lasting side effects and now NED. I know I am lucky, but the emotional toll keeps creeping up. I am having some deja vu about my initial dx time exactly one year ago, and it is freaking me out. If it continues I will seek professional help. In the end I feel like I can't complain knowing what others have gone through.  I hope to remain lucky! 

 

Denise 

MAbound
Posts: 858
Joined: Jun 2016

You are so right about the emotional distress that comes with this diagnosis. It doesn't just stop when treatment ends because it's really, really hard to believe that you may have been cured by all that you've been through. For some, there is also some aftermath that has to be learned to live with. Scanxiety is a real thing and the weeks running up to that next follow-up doctor appointment are such a b***h to get through. 

For myself, I can say that what has really helped is getting to the next milestone. I never rang a bell at the end of chemo or celebrated finishing radiation, but when my follow-ups got cut back from every 3 months to 6, now that was worth a whoop-dee-doo or two! It just seemed to make the dark cloud of worry that followed me everywhere get quite a bit smaller. I don't know if that is true for everyone, but I can point to that event being such a big deal for me and my worries about a recurrence.

It takes time being NED to make this trauma feel like a bad dream. I don't expect to ever feel entirely immune to recurrence since I had an advanced, high grade cancer, but I'm not as afraid of those check-ups as I used to be.

Feelingalone74
Posts: 223
Joined: Jun 2019

Hi Denise ,  u certainly have much to feel lucky about and I'm so happy to hear that you're one year out! That's  a blessing !   I certainly  can understand your emotional concerns! All the uncertainties  is very waring emotionally ! Stay positive  my dear!

 I'm just in the beginning  of this whole journey. I have had surgery and rebounded very quickly from that and felt great! On the 30th I will begin treatment. Since I found out that I will be having treatment I have been in emotional wreck. Not sleeping and fighting through depression for sure. I reluctantly got a prescription for something to help me sleep two nights ago but it's not working so far. Any suggestions?

I too   got through  surgery thankfully  no complications   ,  hoping to  get through the physical  effects of chemo and radiation stronger than I think I'm going to. But it's the emotional distraught that's got me the most . When i start losing my hair I know that is going to be traumatic   and feeling I lose the sense of who I am,   but mostly just not knowing what's going to happen to me and my body. Wishing  I  could  stay positive  but no sleep  and stress of this all is very hard emotionally . And like u , I  anticipate  it won't stop even  after treatment  because  I'll  be  worrying  every time  I have a check up and the what ifs . I've been  told repeatedly to live for today but easier said than done . 

I hope 1 year  out that you  find you inner strength and also STAY LUCKY 

Michelle   

 

 

MAbound
Posts: 858
Joined: Jun 2016

Just in case you haven't seen all of the threads here yet on icing, I thought I'd make you aware that it is something you need to look into and consider before you start chemo.

Icing your hands and feet really helps to prevent chemo induced peripheral neuropathy and there are special icing caps, too, to prevent hair loss. CIPN can be a permanent side effect of chemo you really don't want because not much touches that pain, whereas hair loss is temporary in spite of how it impacts our self identity.

There are plenty of threads with links to where to buy hypothermia mittens, socks, or slippers or hacks on how to do it cheaper if cost is an issue for you. I don't think anybody has mentioned a hack for ice capping, but if it comes down to doing some rather than all, give priority to icing your hands and feet over saving your hair. Many of us find not having to fuss with our hair for a while kind of liberating, but I know I didn't buzz my hair early because I felt like I was losing myself as it was falling out. I had a nice wig, though, and felt ok going out in it with all of the nice complements I got. 

Fridays Child
Posts: 55
Joined: Jul 2019

Just remembered something, Feelingalone.  A day or so after chemo you may have the "decadron glow" in which your face turns red and hot and feels like it's sunburned.  It will go away after a day or so.  I found 100% aloe gel to help with that.

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Interesting, I never heard of that one.

Feelingalone74
Posts: 223
Joined: Jun 2019

Good to know in advance Fridayschild

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

I had rosy cheeks after the steroid, didn't really feel hot though. Also, my husband said I was "fiesty" LOL

MAbound
Posts: 858
Joined: Jun 2016

I don't remember being told to avoid the sun when I was getting Taxol, but I do remember that I was with Taxotere and they are in the same family of platinum based drugs. It's probably best to be a houseplant as much as you can this summer to be on the safe side. I went through chemo in the summer, too, but staying inside didn't bother me much because I really didn't feel up to my normal routine anyway. Just give yourself permission to focus on getting yourself through this by getting lots of rest and drinking lots and lots of water to flush the drugs and deal with the constipation. Everything else can wait till later or someone else can do it. 

Feelingalone74
Posts: 223
Joined: Jun 2019

MABOUND, I think I will play it safe and avoid the sun as much as possible.  The last 2 weeks I've stopped going in our pool and stayed in as much as possible just to get myself in a new routine so it doesn't get to  me all at once. This is hard as summer is my favorite season but not sure what else to do to prepare myself emotionally for the lifestyle changes that are coming  

Thank you for the suggestions! I've heard flushing the drugs is key. I'm a constant water drinker so hoping that part at least is a lil easier.

Michelle 

jan9wils's picture
jan9wils
Posts: 56
Joined: Mar 2017

I stay out of the direct sun as much as possible. I wear big floppy hats when walking the dog or working in my garden. I swim early in the morning before the sun is high in the sky or in the eveneing. I love swimming because the water supports me but I still feel like I am getting good exercize. It also helps me calm my mind. Both times I had chemo and when I had radiation I was advised to avoid the sun. I'm on a trial immunotherapy drug now and was not cautioned about the sun but still avoid it during the peak times.

Feelingalone74
Posts: 223
Joined: Jun 2019

Thanks Jan9wils , I intend to get a big floppy hat for when I have to be outside or going on my long walks but will try to do it on the no peak hours .

Best wishes on your trial immunotherapy drug!

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

I live in South Texas and had chemo from June - October, and did fine without spending too much time in the sun.  If I had had a pool, I'd have been much more tempted!  Definitely ask your doctor.  So glad to hear you did well through surgery.  I sure understand your trepidation about chemo - the day before I started, I was on the phone for 3 hours with a friend who had been through it and she really had to talk me off the ledge.  I was sure I was going to die from the first infusion!  Good news - you won't!  You will be in wonderful hands with experienced staff who do this every day.  Pay attention to how you feel, and don't hesitate to call your nurse case manager if anything feels really wrong.  I'll give you an example, not to scare you, but to inform.  On Day 3 after my first chemo, I developed acute onset severe neuropathy in my arms and legs.  It's like the worst case of "foot falling asleep" you can imagine.  Painful.  Couldn't walk properly, couldn't use my hands.  On Day 4, I felt horrible.  My heart was racing, and no matter how still I lay, I couldn't get my heart rate under 160.  I was really calm, but I KNEW I needed to go to the hospital immediately. But here's the thing:  I had heard chemo made you feel awful, and I didn't know if this was the normal awful or a wrong awful.  I trusted my gut that I needed to go, and it was a really good thing.  They didn't have to shock my heart, and were able to use an IV drug to get the rate down; I was having aFib as well as the RVR, and the aFib finally resolved itself the next morning.  I saw my oncologist after I was released and told her I didn't think I wanted to continue chemo if it was going to be like that.  We weren't sure if it was the taxol or the steroids given with chemo or both that caused the heart stuff.  My doctor decided that the second chemo would be carboplatin only, and I asked if we could cut the steroid dose in half as well.  She told me that often when neuropathy hits suddenly and severely, it will dissipate, and it DID.  It was a blessing straight from heaven. The second chemo was a breeze.  I asked what we were going to substitute for the taxol, and the doctor agreed to taxotere for the remaining 4 treatments.  They weren't a picnic, but certainly not nearly as bad as the first one, and I wore a heart monitor for thirty days to keep an eye one that part.  I iced my hands and feet during every infusion, and I am thankful to report that I had no more neuropathy.  

I want to encourage you about hair loss.  I was upset too - we all are.  That episode in the hospital with my heart and arms and legs really put the hair in perspective for me.  it was still hard to cut it and lose the rest, but compared to your LIFE, it's a small price to pay.  As I'm typing this, my hair is touching my shoulders, exactly a year after I put my wig away for the last time.  I have loved it, and tomorrow I'm going to go get it cut really short because Texas in summer doesn't play and it's HOT!  Buy yourself some cotton beanies and some really cute earrings.  I wore that at home and wore my wig every time I went out.  I have mentioned this a hundred times, but the feel of a warm shower on a bald head is luxurious, so try to find the little silver linings.  This is a really temporary situation.  I am not minimizing it, because I cried my buckets, and my daughter didn't want to see me without that wig, ever.  I just want you to know that it comes back faster than you can believe - I've had at least four haircuts and two colors since last May.  It's going to be ok!!

And all of you above, I sure appreciate the frankness in discussing the emotional parts.  I agree -  that's definitely the longest-lasting, most intrusive side effect!  Thankful for all of you because we really do understand each other.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Well said, Armywife! I didn't know you'd gone through all that with your first infusion, you're a trooper1

Feelingalone74
Posts: 223
Joined: Jun 2019

Hi ArmyWife, Thank you for your inspiration and sharing your journey .  You've  all been so kind and it's  helpful  to talk with you all whom really understand  what it's  like .  Hearing that's  it's  going to be ok warms my very anxious  heart! 

I'm relieved  to  hear that I won't die from the 1st infusion  because  of course  that's  what my fear is and not knowing  how  my  body will tolerate it. I'm so sorry that you had difficulty with your first infusion! I'm glad it got better for you! I have already told them at the center that I will be requesting ice  during infusion 2 hopefully minimize neuropathy . ...thanks to all of your advice .  I feel great  right now so going to the st infusion   the 30th is going to really  be tough when I have no current  pain nor to I feel sick. I know I've  been in denial giving how amazing  I feel currently . 

Any advice on how to deal with no sleep ?  My mind races all night long . Since my pathology  report I sleep only  2 hrs if I'm lucky a night. During  the day I keep mu self busy to minimize  my thoughts. Nights are hard.  I just started taking Ambien 2 nights ago...unfortunately  it isn't helping  

Though  I know the hair loss will be traumatic  for me as you said Life is more important  than hair .  I'm happy  to  say that I meant  this most wonderful  beautician  via the center  I'm  going  to .  She invited  me  to  her Salon for a consultation .  She helped me choose a hair color and wig    that would best match my current hairstyle. To say she is an angel would be an understatement! Yesterday I went to pick it up and she also gave me a makeup lesson and how to apply my eyebrows. What a  blessing  she is! It will definitely take some time to get used to it. I'm going to miss my own long hair for sure but I'm grateful  to  have  been able to get it prior to my hair loss. 

I have gotten  a beanie and a headband that has a ponytail  and side whispes to where under my baseball cap. My son and I are big baseball  fans so wearing a cap and ponytail  will be familiar .  I  don't plan to leave my bedroom  in the a.m  without it post hair loss ,  much like your  daughter  he would deviated to see me with no hair ,

Sounds like your hair has grown  back very pretty !  And so relieved  to hear it will come back faster than I think it will .

When should  I  be  expecting  that I'll  loose my eyebrows and lashes ?  That's  another big breath I can't swallow.

Stay cool in the Texas heat!

Warmly   Michelle  

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Michelle, I used plain old cold packs from Target.  I didn't want to spend the money on the mitts and booties from amazon.  I wrapped the cold packs in kitchen towels and secured with a rubber band.  It looked like the Beverly Hillbillies but it worked! Ice is your friend!  Also, I think I saw on another post where you or another new member were asking about what to do during infusion.  The benadryl will give you a nice drowsiness.  By the time you relax under the warm blanket, doze a bit, have some snacks and plenty to drink, and chat with the nurses and fellow patients, the day goes pretty fast!  I made great friends in the chemo room.  Never even had time for the tv, but there was one right in my cubicle.  I had a tote bag full of books and pastimes, and never messed with it - did sort of paw at my phone scrolling facebook though.

I was a failure with eyebrow pencil, but found a brow stencil and powder worked great for me - and I still use them to enhance my brows, which came back a little thin.  Eyelashes came back before I knew it and are even longer now, wlthough there are a couple of thin spots on my bottom lashes.  Nothing some good mascara can't help with.

Port surgery is not bad.  You'll be awake but sedated.  I felt a little pressure.  You've got to keep the incision dry for a few days and also avoid putting your arm up over your head for a couple weeks so the tube can "seat" well in your vena cava.  Your chemo nurse may give you some lidocaine gel to put on so you don't feel the little pinch when they access your port, but honestly I don't even bother with the gel anymore for my monthly port flushes - it doesn't even hurt.

Feelingalone74
Posts: 223
Joined: Jun 2019

HI Armywife,

Thanks for letting me know about what u got for ice packs. I will pick up a bunch of those. Did u secure them to your hands and feet with the rubberband? How often should I  do that?

I did get an eye brow stencil and brow powder.  Hoping I can create brows better than anticipate when the time comes.

Port placement surgery Thursday.  Very anxious about that too so thanks for letting me know it isnt bad. 

How long after chemo treatment do they leave it there?

Michelle

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

M, I took a cooler with ice and the icepacks.  They do make really cool ones with elastic straps that you can strap on if you're not into the redneck look! I got one of those last year after I broke my ankle and a pt recommended it.  The brand is elasto-gel and I got it on amazon.  It wouldn't stay cold long enough for a full infusion day, though.  My infusions were shorter because I had taxotere instead of taxol after the first chemo. So with the cheap icepacks, I folded a kitchen towel over mine and then just wrapped it around my hand/foot and secured with a big rubber band.  I started right before infusion and changed when they didn't feel cold.  Helps if you have someone nearby to help with the second hand once the first one is bundled.

I still use my stencil and brow powder daily - they give my old face a little perkiness!  I noticed a change about a year after the hysterectomy - my skin lost a lot of elasticity.

Doctors will differ about the chemo port longevity.  My doc insisted on 2-3 years after finishing treatment.  Some ladies have gotten theirs out right after treatment.  I plan to get mine out in October at the 2-year mark if I get a clear PET scan.  The nurse who does my port flushes every 5 weeks says you can keep them 20 years if you want, and she recommends it because it's such a pain to have to have another port surgery if you need another.  I don't mind the flushes a bit, but I also live less than 5 minutes from our hospital so it's easy.

 

Feelingalone74
Posts: 223
Joined: Jun 2019

HI Armywife,  I don't mind the redneck look. I always tell my husband he's  a redneck so I'll fit it in LOL..he will be going with me so he can help wrap. I will look up the elas to get on Amazon to maybe have fir the 2nd infusion.

I'm sure your face looks beautiful still! 

Oh wow. That's something I didnt ask in regards to the port. I just assumed it would be taken right out after treatment was finished .

The hospital and center  is only 15 min from house so going for flushes won't be too much of a hassle.

We'll all celebrate you in October when u get your  clear petscan!

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

my doctors is to keep a daily diary of my side effects, times I took the anti-nausea and record diarrhea, any vomiting etc. This was really helpful to catalogue everything and it helped me and the doctors to see the progression and severity of the side effects. So I know that I had constipation, then after a few days, diarrhea. I knew when the bone pain started and when it stopped. Same thing with the neuropathy. I also recorded all of my glasses of water each day. Appetite, anything that I thought was notable. By the third chemo, I knew when each side effect would begin and it helped me to mentally prepare, or note that the particular side effect was less or more than the previous infusion. I had quite the record by the time I was through, but it was worth the effort and helped me get through. I, too, was too sleepy to do much else than keep warm. I brought a really comfy small fleece blanket. I finished my chemo in late October and I was cold all the time, even with sweaters, thick socks and a stocking cap with thinsulate. That lasted all winter. Hope you get some sleep!

Denise 

Feelingalone74
Posts: 223
Joined: Jun 2019

Hi Denise, 

Keeping a daily diary sounds like a great idea ! Thanks for the suggestion!

Michelle 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

My eyebrows and eyelashes lasted a little longer than the hair did, not completely going until about round 4-5. I gave up on the eyebrows and just used a smoky gray pencil all the way around my eyes to compensate for the lack of lashes. Since that approximated my pre-chemo makeup routine the diference wasn't as noticeable --- or so I told myself. You will want to be prepared for grit in your eyes and a drippy nose due to loss of nose hair, though. It was funny to be reminded that hair is there for a reason; I had a newfound appreciation for it after chemo was over. 

Feelingalone74
Posts: 223
Joined: Jun 2019

HI derMaus,  I'm sure your smoky gray eyebrows are beautiful!

Hoping with practice and time I'll get use to my soon to be new look. I keep my eyebrows thinner than most so hopefully with some brow powder or brow pencil it looks tolerable to me.

Oh boy grit in eyes and ruby nose...does that last until your hair grows back?

janaes
Posts: 758
Joined: May 2016

I did my chemo in the heat of the summer also. I remember being told to avoid the sun and use sunscrrean when needed. For the most part i did avoid it.  There was one day i went to a swimpoiol with my family. I used a big umbrella to shade me the whole time. I had no problems in that regard. It was hot and wearing my wig was hot and when inside my house i went without a wig because of that. 

Fridays Child
Posts: 55
Joined: Jul 2019

Around here they say they want you to keep your port at least a year after your last treatment, but one of my friends got hers out as soon as she finished treatment - three different times! I think they're going to want me to keep mine because I still don't have clear scans. 

My eyebrows and eyelashes also hung on  - I think they departed after the fifth full dose treatment, but they did start to come back fairly soon.  And my husband, looking at me one day shortly after my hair went south for the summer, said, "You sure do have a pretty head."  It's funny how you do get used to it.  I did fairly well with the eyebrow pencil but that was in the hot part of the summer and they didn't last.  Should have tried a stencil - maybe I will if I have to do it again.

Feelingalone74
Posts: 223
Joined: Jun 2019

Fridayschild,  what a sweet husband u have!!!

I haven't lost my eyebrows yet after 3 treatments.  I have 3 more. Praying they hold on but only time will tell .

I bought eyebrow stencils not sure how that will work out but we'll see if need be.

I'm sorry your friend had to undergo treatment 3xs

I hope both she and u are well now!

Warmly, Michelle 

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

He never wanted me to stop coloring my hair because he thought I would not look good with grey, white or salt and pepper. The hair fell out and he was amazed at how nicely shaped my head is, which is an odd compliment if you think about it. For a while my one year old granddaughter and I had the same look, nicely shaped heads, no hair! Who knew? Now not only does he love the short pixie, he loves the color. I had never seen the actual color of my hair because I always colored it so it was a pleasant surprise that it is actually a nice look. My brows thinned but never went away, now they are almost 100 white! Lashes were sparse before, now still sparse. I keep thinking I need to post a new photo of what I look like now. People who have not seen me in a year just stare, which is disconcerting, but it is certainly a dramatic change from my old dark haired straight bob. 

Denise 

Feelingalone74
Posts: 223
Joined: Jun 2019

Denise,  I bet u look beautiful with your new hair style and color!

I'm worried about not looking myself and having people stare at me especially when I return to work! 

How cute that you and your granddaughter had matching heads and what a really sweet compliment from your husband!!!

I am worried about what color my brows and hair will come in seeing I'm only in my 40's. I guess as long as I have hair again it will be a blessing!

Warmly, Michelle 

Donna Faye's picture
Donna Faye
Posts: 238
Joined: Jan 2017

Feelingalone is now Nolongerfeelingalone! What a wonderful collection of information for someone facing chemo! I wish I had had 1/2 this 20 years ago when I did my first chemo. So, the only thing I will add is watch the steroids. No one warned me that after day 3, one could crash from no more steroids. 20 yrs. ago they did not add steroids, so this was the worst part for me. And, please try and do some walking or something every few hours EVERY DAY. My 2017 chemo made me tired and my sweet dog died right before I started, so I was very inactive. Got major blood clots and had to be on Lovenox for 6 mos. and now on Eliquis. But other than that, have survived chemo 3 times; major rads,3 times; and at 79 enjoying NED for past 18 months. Hang in there and you'll have it behind you before you know it. OH! Before I forget, there are now oncology estheticians who can work wonders for making you feel pretty.  If you can't find one, go to the Lancome counter and tell them to help with the brows, etc. Just some blush often gives you a glow. xoxo DF

Feelingalone74
Posts: 223
Joined: Jun 2019

Donna Faye, yes I wish I could change my name on here as since having all the support and encouragement helps me to feel not so alone. 

I am sorry to hear you've had to go through treatment 3x's but I'm so glad to hear that u have been NED for 18 months. 

I have always been a Walker. I always went walking a few miles everyday after work no matter what the weather was. I'm still trying to get my daily walks in I just dont go as far. It has been hard since radiation started as I already feel tired and I still suffer from insomnia.  But I know walking is important so I force myself....about to as we speak. I am on Coumadin for a blood disorder so I know all about blood clots and Lovenox so dont want that to happen! Sorry you went through them! And so sorry about your dog!

Hanging in there honestly has been hard for me but I will take your encouragement for sure that it will be behind me before I know it. The days are long with everyone working but I try to say busy.

I will look into an oncology estheticians nearby me. That'd be a blessing!

Wishing u continued good health!

Warmly, Michelle 

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