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Symptoms showing early

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

I am curious, if you don't mind sharing. Did those with treatment do better? or are my expectations way off?

The Drs told us that Dan would feel great for the first two weeks of treatment, that it wouldn't get bad until the third week. Well it doesn't seem like things are 'great', after just 4 treatments and 1 chemo . His get up and go is gone, he's nauseated, he's constipated (pardon my frankness please), his taste already has changed and we've started with cutting some foods and definitely salt from his diet. He's got a few places where he played with his hair line, and it's moving very slowly (hair really isn't a problem though).

This just doesn't seem like feeling great and not what we were told to expect. He's also eating pretty well, and I am learning ways to get more liquids in, but he's only drinking 4 - 12 ounce water bottles a day.. I keep telling him it could be the source of a few of his issues.. He swears he can't do better.

I'd love to hear this is normal after just 4 days, rather than think this will hit him harder than most letter on...

I so appreciate the guidance and kindness of everyone here.

A very tired caregiver... Kari

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

it isn't the rads that are getting to his taste buds yet, but chemo will...at first it's temporary...some of his taste will come back (tho, keep in mind his rads go on every day, so his taste buds get zapped). Chemo also causes fatigue...a person's blood cells take a beating. Radiation fatigue is subtle...I felt like I should be doing more, but I was so tired, I couldn't even make myself do things.

As for constipation....oh brother, I had it bad!! I took 3 Colaces a day, and still it was a painful experience everytime. That went on all thru treatment...even the last three months when I was only getting chemo. Is he drinking Ensure or Boost? I think that stuff has more to do with the constipation than anything else.

As for the hair...I lost an inch to 1 1/2 inches along my hairline in back from the rads. I don't know when it started, as it was surprise when I saw it. Chemo also thinned out my hair quite a bit.

I think too...and this is just an opinion from my experience....that once I was engaged in the fight, I used my energies for that fight...sleeping was part of that fight. My husband would be all chipper in the mornings, but I would be engaged in mentally getting ready for the amifostine shot and radiation...I know it appeared I was too tired to talk much, but in reality I was in the act preperation for the daily drudge.

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

First of all I'm sorry your guy is feeling so crappy, been there done that and I can so relate. I'm curious, what kind of chemo is he getting? I had erbitux and I too lost my taste pretty quickly except for salt, everything tasted like salt! Even water, it was so gross. When I asked the rad onc he blamed chemo but when I asked my med onc he blamed rads.
As far as the fluids, you are right he for sure needs to stay hydrated. Dehydration happens so quickly and you'll find yourself in the hospital before you know it. I learned that the hard way.
As for the hair, you are right....thats no big deal. My hair got really thin, in fact I have tons of short hairs all over the place now. Haha I look like I rubbed a balloon on my hair to create static. I also lost a huge chunk of hair in the back of my head from rads. If you picture a ponytail, all of the hair that is under the ponytail fell out. It fell out in a straight line almost as if I had it done on purpose. Now it's about 2 inches long, much darker and very curly and soft....being a girl the soft part is important to me haha.
Lastly the fatigue is crazy how it comes on. I remember feeling fine one day and then all of the sudden I was exhausted all of the time. My husband was shocked because I normally go go go, that's what we moms do! My advice is to rest when he can but getting out for a quick walk is super important. As yucky as he may feel, a walk will honestly help.
So much to deal with, sorry. This is a tough journey but doable I assure you.
Take good care of yourself too, I think many times the caregiver has it harder than we patients do.
Billie

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Billie,

Dan is getting the Cisplatin which I hear a lot about here, but the second half of his cocktail is Pacitaxel, referred to as Taxol, which is classified as a plant alkaloid, a taxane and an antimicrotubule agent. It comes from the Pacific Yew tree. I am not sure if I have heard of anyone else in the forum getting this one. It seems like the side effects are rather tough. Kind of a scary thought. Maybe this one because two of his lymph nodes had necrosis and the tumors were growing outside too? Dan's doctors say that it is secondary to the primary treatment: radiation. That it somehow allows the radiation to be 'more effective'. I would think the intent is that they all would?

The walk is definitely a good idea. We walk a lot in the city when going to treatments daily, but I have to remember on the weekends, to get him right after breakfast where he has a bit more energy to expend.

Thanks for the great ideas, Kari

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Phrannie,

Thank you.. well today I just gave him a colace. It's been my friend since I was introduced during the removal of a benign tumor a few years ago. And we tried Miralax last night, so we are hoping for some good results soon! And yes, he's drinking two bottles a day of Glycerna, the diabetic version with less milk product than the Ensure/Boost alternatives.

Dan's always been a morning person and this weekend he's awaken with a bit more normal look and feel, but it's gone in a hour or two.. and then the naps start - which I think is great, it means he's letting his body work to heal.

Normally he's a get up early and can work like a dog every moment physically and look good - this is so not the man I am used to living with. And I have had cancer, I get the concept of 'it's going to change'... it's just that I get sooo busy, it kind of shocks me when I see it.. I might just be a tough learner in this subject :)

Thanks for sharing with us,

Kari

MarineE5
Posts: 746
Joined: Dec 2005

Kari,

You are spot on with the fluids being part of your husband's problems. It can not be expressed enough, hydration, hydaration, hydration. We need to take in at least 64 ozs of fluid each day during treatments.

With that said,it is harder to do then just stating it. I found that I was full fairly fast after taking in 2 cans of nutrition and then flushing my tube twice before feeding and then again twice after the feeding. I needed to take in 8 cans a day. I in turn counted my nutrition as fluid, but still took in at least a quart of water during the day by sipping every so often.

Constipation is due to the lack of water on top of any pain med's or any med's for that matter. I used one dose of the liquid form of Colace stool softener thru the Peg Tube every other day which kept me at my normal movements.

Radiation will fatigue us, I didn't have Chemo, but my sister has gone thru that and it really knocked her down for the first 4-6 days of each cycle.

My Best to Both of You and Everyone Here

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Marine,

I kind of feel rather embarrassed, but I am brutally honest.. so... as I was reading the posts to Dan this am, he informed me that our water bottles are 16.9 ounces, not 12 oz. -- oops.. so he was happy to hear about your 64 ounce rule. That his four bottles a day is actually - 67.6 ounces in a day. So I guess he really is doing well in that category - another relief. But I did get my "more won't hurt" smile in :)

Thank you for your response, and our best to you too,

Kari

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Kari,

The nausea starts with the first chemo and may continue until you find what works for you (him). For me it was Zofran, but Zofran comes with its little buddy constipation. It is a bit of hit and miss, but in most cases you can get a handle on the nausea.

Taste for me started to check out during week 3 of rads. Since I was doing Erbitux I can not blame loss of taste on it. Others do notice a measurable loss of taste from standard chemo treatments.

I drank water (hydration and swallowing), prune juice (Zofran), Boost, Ensure, Carnation (drink one meal a day). Before I started treatments, the H&N forum had me scared to death I would forget to swallow (not on my watch). I drank 6 – 10 glasses of water a day (and still do). Not only did it keep me hydrated, it was continually washing all the toxins out of my system. Getting up and going to the bathroom just became normal during treatments, as did spitting, coughing, gagging and dry heaves (from too much choking).

Feeling “great” during any part of treatments is more of a pipe dream than reality. For me fortunately it was sleep that I found most enjoyable. Throwing out the nights when I had to take a Lorazapam to slow my racing mind, sleep was my refuge.

Another thing, if he is in pain, take medications for it. It does not pay to tough it out. Choose your battles wisely and use every weapon in your arsenal.

He is having a tough start, his body needs to normalize to the new conditions, then things will hopefully smooth out.

Best,

Matt

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Matt,

Thanks for the good advice, I think listening to those here is so much more helpful than the medical community about expectations and encouraging what worked and what didn't. Although we really do appreciate then, their marvelous brains, and talents to cure - they have their place in advice too - there is just more comfort in the words found here.

It's weird, I am scared, I read the sadder stories, my heart breaks, my eyes tear for them when I can't do that for us [I was a single mom for many years, my bff is strong], and then I worry. I imagine it's more normal than not for the caretakers. I have a friend who said "stop reading on the internet" trust your doctors. I dismissed her comment, if it wasn't for my investigating and learning all the really scary stuff, I would have never found this forum, never heard of Mugard, never been able to ask questions 'off hours' and get answers! Never been able to read about others success after the rough parts. Moreover, find peace of mind, at least til something changes again!

Thank you,

Kari

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

when to quit reading the internet :). I haven't looked at one thing since I found this site...WAY TOO SCARY!! Not to mention cold and unfeeling.

My ENT told me when I was first diagnosed "you'll eventually die of something, but it's not going to be this!!"....I have held on to that...I love that guy...he doesn't pussy foot, but he's a kind, gentle man...and smart as a whip.

I know it's hard to read the non-success stories...I have trouble too, it scares me...keeps me in touch with the fact that this is cancer and cancer is deadly...but as you hang around here longer, you'll see that there are WAY MORE success stories than the other way around. Hang on to that.

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Phrannie,

Today I preparing for our move in the wee hours or tomorrow morning to a hope lodge, I have lists and letters, and packing, keys to distribute, organizing pharmaceuticals, to-go-meals, snack stuff -- thank heavens we have a mini-van for business - we are able to take it with us. It will be full. But today I am also making a list of side effects, and in a spreadsheet adding the dr's and treatments, and meds, and creating a chart for which side effects go with what prescriptions and what treatments, so we know who to call, should something appear!

This will make me certifiable :)

this for the guy who just took fish oil daily til 52.

Kari

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Since you are collecting suggestions, here is mine: When swallowing starts to really hurt, I found that having liquids/semi-solids at body temperature was less painful. My wife taught me how to warm water bottles in a bot of water, like she used to warm baby bottles. Except during (and immediately after) radiation treatment, I would never drink water at that temperature. But it really hurt less than cool water.

Now to be honest: no one else offers this advice. So I may be the odd ball hear. Nevertheless, I believe it is worth a try. Also my cancer was laryngeal cancer and the pain was throat pain. I did not have to deal with mouth soars. That may be a different ball game entirely.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Thank you Golden,

It makes a lot of sense to warm the water, although something I would not have thought of doing. We are used to room temperature already, because we go through too much of it, and have a side by side refrigerator, and three shoppers in the house! Never enough room for water.

I'll add it to my bag of tricks,

Thanks, Kari

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

anything I ate, I ate a room temp...and that included water....too warm, too cold makes it so much harder.

p

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Other than having cancer, I was in perfect health...

So yes, treatment was harder on me..., yes harder after the first few weeks, but those first few weren't a piece of cake eother...

Best,
John

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