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"sunburn" in groin area and hemoglobin questions

LaCh
Posts: 509
Joined: Dec 2012

Well.   Tomorrow, the needle comes out for the last time (and I have 5FUs for the FU). Tuesday this blessed port comes out.  And oi nothing goes wrong, the last radiation treatment is scheduled for the 29th.  I still have off-the-chart pain when going to the bathroom, has me screaming into a towel so the neighbors don't hear me and my solution, illogical, poorly-advised, overall bad is to eat as little as possible.  Yes, I know, a bad choice but that's what I'm doing.  Desperation leads to desperate measures. Anyway, two questions: One, how many of you have had what appears to be a very bad sunburn in the groin that DIDN'T escalate to anything worse, and Two, since the nadir (low point) of the blood values comes between 3-4 weeks after the chemo is delivered, how many people had hemoglobin (or other) blood values that dipped lower during the second round of chemo than the first?   Thanks in advance.  Oh, one more thing...  anyone experience bowel urgency, sudden, no worning, and following immediately (like less than one minute) after eating, even just a sip of water? 

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I'm very surprised to hear you will be getting your port taken out so soon.  Just so I'm clear, is it a port or a picc line?  As for your questions, I had much more than a bad sunburn in my groin area--more like 2nd. degree burns.  My skin turned black and I was shedding like a snake.  As for your second question, Nadir usually happens around day 14 after chemo.  My blood counts dipped during the 1st. round enough to get me signed up for Neupogen injections.  The counts were even lower during the second round, but for some reason, my oncologist did not do the injections the 2nd. time around.  Somehow, I was able to continue the radiation and made it to the end.  As for bowel urgency, oh my--my bowels would go off like a water balloon with little or no warning.

 

You are not the first person who wanted to quit eating during the end part of treatment.  All I could think of was "what goes in must come out."  BM's were excruciating and I found myself screaming often.  Although it is not the best thing to do, I totally understand why you would not want to eat. 

 

Just keep taking this one day or one hour at a time if necessary.  You are getting so close to the finish line and you will get there, I know you will.  Stay strong and stay hydrated.  With the diarrhea, you are losing more fluids than you probably realize.  Please keep us posted. 

LaCh
Posts: 509
Joined: Dec 2012

Thanks for the quick response mp327.

The port's coming out because I don't need it anymore and I hate the thing; it's been painful from the outset. I have no doubts or concerns that the treatments won't get rid of the tumor; if I'm wrong, I'm not going to pursue more treatments, so I won't need a port; that's my choice, but as I said, I'm not worried about it; I assume that the tumor will be gone.  I don't believe in god but do have a different take on things than most people in terms of life, death, what comes after, rebirth and what constitutes a life well-lived, and those things influence my choices. I hope not to die just yet (and don't really expect to) but if that's what lies before me, I'm ok with that.  So that's why the port's coming out. (And in any case, it wasn't something that I had to lobby for; I simply asked "how soon can it come out?" and "Tuesday" was the answer.) I've drunk 3 liters of water daily for the last several years and so didn't need to change that; I simply continued doing what I've done for the last several years. As for fluid loss, actually, I do realize how much I'm losing and in addition to the 3 liters of straight water, I drink a homemade electrolyte replacement drink of water, magnesium, potassium and vitamin D3 (for magnesium uptake) and make sure to ingest a small amount of sea salt.  I feel the results within a half hour of drinking it. I feel physically like crap but mentally strong and have during the last 5 weeks and (so far) have managed on my own and have also made it up and down the 5 flights of stairs to my apartment as well as walked my dog three times a day. It's not been easy but I've gotten it done. It's just that I'm getting rather cranky and am ready for this thing to end.  To make it even more fun, the hospital where I had the port implanted billed an insurance company that I haven't used for 2 years, despite having received all my current information, so I have that to straighten out, my medical oncologist's office combined my chart with another patient's chart so I have THAT bill (and already-made-payments) to try to straighten out, and have a radio oncologist who is dedicated to never answering any questions and doing it in the rudest way possible and I'm about ready to choke him (his nurse has picked up the slack and has been very nice and quite helpful, as has the American Cancer Society).  So in addition to being in the worst pain I've ever experienced, with the deepest fatigue and lowest energy, my patience is wearing very thin, as I find myself having to deal with things that I really don't have the energy (or desire) to deal with and shouldn't have to. There are so many layers of unnecessary complication added onto this and it just didn't have to be this way. The last thing in the world you want is to deal with other people's mistakes that simply serve to complicate your life, just when you're least able/motivated/interested in dealing with it. Record-keeping, billing and keeping one chart separate from another patient's aren't rocket science. Nevertheless, they seem to be.  As you can see, I'm just very, very cranky.  Anyway, needle out tomorrow, port out Tuesday, 7 more radiation treatments and I'm done.   And very ready to BE done.  Now, I just wait to see what I'm left with in terms of pain, bowel function/dysfunction, the knee neuropathy that I've had since the first round of chemo and "miscelleanous."  And yeah, I'm not eating very much and will continue not to as long as I can.  It does seem to help.  Anyway, the way I see it, I'll have a good story to tell when it's all over and that  can't come soon enough. Anyway, thanks for your input and info, it's all appreciated.

LaCh
Posts: 509
Joined: Dec 2012

Thanks for the quick response mp327.

The port's coming out because I don't need it anymore and I hate the thing; it's been painful from the outset. I have no doubts or concerns that the treatments won't get rid of the tumor; if I'm wrong, I'm not going to pursue more treatments, so I won't need a port; that's my choice, but as I said, I'm not worried about it; I assume that the tumor will be gone.  I don't believe in god but do have a different take on things than most people in terms of life, death, what comes after, rebirth and what constitutes a life well-lived, and those things influence my choices. I hope not to die just yet (and don't really expect to) but if that's what lies before me, I'm ok with that.  So that's why the port's coming out. (And in any case, it wasn't something that I had to lobby for; I simply asked "how soon can it come out?" and "Tuesday" was the answer.) I've drunk 3 liters of water daily for the last several years and so didn't need to change that; I simply continued doing what I've done for the last several years. As for fluid loss, actually, I do realize how much I'm losing and in addition to the 3 liters of straight water, I drink a homemade electrolyte replacement drink of water, magnesium, potassium and vitamin D3 (for magnesium uptake) and make sure to ingest a small amount of sea salt.  I feel the results within a half hour of drinking it. I feel physically like crap but mentally strong and have during the last 5 weeks and (so far) have managed on my own and have also made it up and down the 5 flights of stairs to my apartment as well as walked my dog three times a day. It's not been easy but I've gotten it done. It's just that I'm getting rather cranky and am ready for this thing to end.  To make it even more fun, the hospital where I had the port implanted billed an insurance company that I haven't used for 2 years, despite having received all my current information, so I have that to straighten out, my medical oncologist's office combined my chart with another patient's chart so I have THAT bill (and already-made-payments) to try to straighten out, and have a radio oncologist who is dedicated to never answering any questions and doing it in the rudest way possible and I'm about ready to choke him (his nurse has picked up the slack and has been very nice and quite helpful, as has the American Cancer Society).  So in addition to being in the worst pain I've ever experienced, with the deepest fatigue and lowest energy, my patience is wearing very thin, as I find myself having to deal with things that I really don't have the energy (or desire) to deal with and shouldn't have to. There are so many layers of unnecessary complication added onto this and it just didn't have to be this way. The last thing in the world you want is to deal with other people's mistakes that simply serve to complicate your life, just when you're least able/motivated/interested in dealing with it. Record-keeping, billing and keeping one chart separate from another patient's aren't rocket science. Nevertheless, they seem to be.  As you can see, I'm just very, very cranky.  Anyway, needle out tomorrow, port out Tuesday, 7 more radiation treatments and I'm done.   And very ready to BE done.  Now, I just wait to see what I'm left with in terms of pain, bowel function/dysfunction, the knee neuropathy that I've had since the first round of chemo and "miscelleanous."  And yeah, I'm not eating very much and will continue not to as long as I can.  It does seem to help.  Anyway, the way I see it, I'll have a good story to tell when it's all over and that  can't come soon enough. Anyway, thanks for your input and info, it's all appreciated.

Lorikat's picture
Lorikat
Posts: 556
Joined: Jul 2011

I had 2nd or 3rd degree burns on my everything!  I rode home from MDA over a two day period right after tx ended.  Ended up in hospital with pnuemonia, neutropenia and infectIon in burn areas.  Had two blood transfusions, IV antibiotics and a wound care specialist.  (she was awesome.  Ex military so I imagine she had seen it all!) was in isolation for 8 days.

Now, the reason I am telling you this isthat I most likely could have kept most of the illnesses from happening.  (except burns of course) if I had stayed in Houston for a few more days and let myself heal.  But I just wanted to go home.  So treat yourself kindly.  I don't know if you are male or female but a dress, toga, kilt or caftan can be your best friend. Commando is the way to go until you heal.  You are strong... All those stairs provthat at....  Just be careful IF your burns progress..   No unnessasary chafing or pressure on that heinie!  

 

And yes, I screamed and cried with every bowel movement for awhile...   I was given some fast acting pain-pops that helped some..

LaCh
Posts: 509
Joined: Dec 2012

Hey Lorikat,

A few quick questions, if you don't mind: what were the pain pops called, did they constipate you, make you drowsy, wear off quickly, control the pain?   Thanks.

Lorikat's picture
Lorikat
Posts: 556
Joined: Jul 2011

I don't remember the maker of the pain pops but the were Fentanyl based.  I can't really say if they caused constipation because at that time my bowels were all over the place, from diarreah to constipation and back in the same day.  Did it help the pain?  Yes.  Did it make it go away? No.  

 

Did not make me drowsy, and seemed to be short acting.  I would put one in my mouth 1st thing when I woke up so I would be a "little" prepared.....

jcruz
Posts: 214
Joined: Jan 2013

All of my blood values plummeted after my 2nd round of chemo.  I needed 3 neupogen shots and a transfusion.  I was utterly drained.  That week I started 3 times a week hydration sessions at the infusion center and kept it up for another 3 weeks.  That really helped.  I ate very little mainly because of lack of appetite and getting a bad case of thrush in my mouth and throat after both chemo rounds.  I did make myself a protein drink every morning and sometimes ate very little beyond that.

I'd say my burns were worse than a sunburn.  I had some hideous blisters but I healed up within 3 weeks of the last radiation treatment.  Baggy boxer shorts and sweatpants were all I wore for quite a while to minimize any contact with my poor skin.  Now I have some weird mottled coloring of the skin which I guess will fade in time.

 

 

LaCh
Posts: 509
Joined: Dec 2012

Thanks jcruz,

I've got 7 radiation treatments to go and the "sunburn" has appeared in the groin (the butt burn has been present from the second week, getting progressively worse but so far, more or less under control.  Not sure if it'll stay that way but I'm hoping so. The internal problem, whatever it is, as yet undiagnosed, has only gotten worse and is truly a hellacious, torturous, indescribably painful thing). The sunburn seems to diminish somewhat towards the nighttime and seems at it's worst right after treatments so I'm thinking that the upcoming three-day weekend might be beneficial (a "break" seems minimally helpful, at best).  Hopefully, it'll just stay bright red and not develop into blisters. I always wear baggy clothes, boxers, sweats, always have.  I've also not used anything topically (tried and stopped aquaphor, tried and stopped silver sulfadine, tried and stopped domoboro, all of which created more problems than they solved.  Staying dry seems the way to go for me).   As discomfort increases and time wears on, my patience wears thin.  I just want it over at this point and although I can see the end in sight, in another way, the 29th can't come soon enough.  When I think of other cancers that are treated for months on end, including young children, I simply can't imagine how that is, or the strength and tenacity of those who endure it.   It's pretty humbling.

pializ
Posts: 256
Joined: Nov 2012

Hi there,

I am having 28 RT's and 6 left to go. Not having today's as snowing badly. Second bout of chemo will be completed tomorrow lunchtime. I just hope I can get to the hospital to get it disconnected and be rid of the 'bag'. Hopefully will get PICC line out on Monday. I have been on antibiotics from the outset and so have had suffered the consequential vaginal thrush. Treatment for that caused a rapid rise in ALT levels so now can only use topical treatment for that. Sooooo painful! As for burns, my front part has really reddened up these past few days and skin has started to peel (treatment only from the back for the past week until end of treatment (which can't come fast enough). I have been using Benadryl for the accompanied irritation. Like you, any creams that they have suggested, I have not tolerated well, so just using a portable bidet and salt water washes to manage. Pain is managed currently with co-codamol with oramorph at the ready should I need it. The nausea from chemo is not good, but tolerable. & yes, 5 FU to FU!!!

I really don't know how you have managed to walk your dog 3 times a day throughout! I get so fatigued so easily! & I am very fortunate in having live in family support (although sometimes I would like a bit of space so that I can just relax and not have to make out all is ok when sometimes it isn't).

But we are almost there now! We have done well (maybe little choice in that, but still, we have done well). Another experience in life! Plus ongoing experiences with follow up and once touched by cancer, it never really leaves us does it?

I have been thinking about you and glad to see you've posted again.

Take care

Liz x

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

Perhaps your snow day is a good thing, giving you an extra day over the weekend to heal up a little.  I'm glad you will be getting rid of the pump tomorrow, as it is such a relief to no longer be tethered to that thing!  It's good to hear that your pain has been managed pretty well too.  My pain was off the charts.

 

You are within sight of the finish line, so just keep moving forward and soon you will be in healing mode.  This really is the roughest part of the treatment phase, but you sound strong and determined and I know you can do it.  Try to have a restful weekend.

LaCh
Posts: 509
Joined: Dec 2012

hey Pializ,

I think that you and I are more or less on the same schedule and in the same point in it.  I had the chemo line disconnected today (great!!!) and have 6 more radiation treatments, scheduled to end on the 29th due to the three holidays that fell within the weeks of treatment.  I also have 6 radiation treatments left and the redness in front is off the charts.  I've never seen anything like it, feels hot, burns and I'm curently icing it to try to cool it down.  I've no idea how I'm going to get through 6 more of these if it's so red and burned already. As for walking my dog, I just let him do his business and bring him back; getting up the stairs to the 5th floor is very challenging but he's got to go, I can't not walk him.  I also agree with you, in that we seem to have responded similarly; all the topical things I've tried only made things worse. Now I simply apply a cool, wet paper towel to the burnt parts when I go to the bathroom, which is a very temporary fix but does feel good.  My strategy for dealing with off-the-charts pain when going to the bathroom, pain so intense I was screaming into a towel each time and unable to stand from the pain when I was finished--is to stop eating solid foods.  Smart? Probably not.  But I'm going to continue with it as long as I can.  I'm drinking Ensure, eating maybe a slice of two of dry toast during the day, maybe a small amount of egg whites but aside from that, just water, tea and Ensure.  It ramps the pain down to a level "10" which is better than it was.  Funny how such intense, exquisite, indescribable pain sort of resets your pain-o-meter so that a level 10 is considered better that what it was.  I just have to get through the last bit.  Unfortunately, the closer you get to the finish line, the harder it gets.  One last comment. I completely understand your desire for "space."  Being a solitary person by nature, liking my solitude and needing my space, I find that my need for those things is amplified right now a thousand-fold.  I just don't want anyone near me, around me or in my apartment.  I just told a friend that I'd go to the port removal myself and get myself back home, simply because I can't stand anyone near me and just want to be alone.  Having to make out like youre ok when you're not (as you describe your situation) is a burden that you shouldn't have to bear.  It might be beneficial to be able to say, "I feel sick. I feel tired. I'm in pain.  And no, I'm not really ok."  To be free to say those things to your family would be a real gift, something that they could give to you; the ability to express your feelings more openly rather than put their needs (or their perceived needs) before your own.  It seems that if there were any time when your needs might take precedence over theirs, that time might be now.  But that's just my take; everybody's situation is different, each family's dynamic is different and each person is different.  All I know right now is that my groin is about to set off the fire alarm in my apartment.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

i hated my picc line... it hurt all the time, had to be partially  redone cause infection starting.. hated it ..... soooooo i got it removed immediately after they unhooked my chemo bag.... BIG MISTAKE.....  i knew that i had been feeling horribly and getting more and more diarrhea but thougth  that was just what one did during cancer tx.... i crashed one day after picc line removal... had to be taken to ER and ICU for fluids and etc.... had to stay in hospital 10 days with IV's coming and going out of my arms ( the veins would blow out)  .... hooked up to everything... if i had just kept the picc line one more week , i could have saved myself all the blown veins and pain ..... i had huge knots in my veins for 2 years after all the horrible meds that they put threw them.... i am blessed that they have gone away.      be careful..... you might keep the port for one week.....   sephie

LaCh
Posts: 509
Joined: Dec 2012

Hi Sephie,

All good points, and I hope not to have a similar situation but for good or for ill, the port's coming out next Tuesday....  And that'll be GREAT.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. Just a quick suggestion re. Getting your nutrition. Have you tried organic baby food? It is easy to find, easy to carry home, and you can heat it up easily. I found it easy and satisfying enough on bad days. Getting extra protein now is super important, as protein is what your body will need for healing. Plain organic yogurt and peanut butter are other sources of protein and easy to digest. Baked custard is another easy to digest, protein packed food. The discomfort will most likely continue for a few weeks. Nutrition now is so important for your healing. Focus on getting lots of protein for the next month to speed healing.

LaCh
Posts: 509
Joined: Dec 2012

Hey Marynb,

Thanks for the suggestions.  You know, I actually consided baby food; at this point I'm way too gun-shy to eat anything solid.  It's tempting, I admit; the longer I eat, basically toast and Ensure, the more I think about real food.  It's just that the pain was so off the charts before that I'm afraid to even risk it.  And to even say that my pain is a level 10 now, and that that's an improvement--well, I'm sure that you and a lot of people on this website know exactly ehat I mean.  Yogurt and almond butter were what I was eating before and it made me constipated...  Toast, a very small amount of boiled potato, egg whites from time to time--that's all I'm brave enough to risk at this point.  Right now my only source of protein is the Ensure. And the egg whites when I have them.  Any suggestions for the groin "sunburn"?  I'm about to spontaneously combust.

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