CancerCompass message board discussion started by spiritheart on 7/10/2008 http://www.cancercompass.com/message-board/message/all,25906,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ First I want to thank all of you, especially all of you "regulars" who have taken the time to answer questions and share your experiences here.   I have never posted a message before but have been following you all religiously since my husband's February diagnosis:  SCC base of tongue w/ bilateral lymph node involvement.  I am amazed at the courage, determination and genuine compassion I've found here on these boards.  My husband has gone through 9 weeks of chemo induction (Cisplatin,Taxotere and 5FU).  He began 32 radiation treatments( with weekly Cisplatin) June 3rd and is 6 treatments away from finishing! ( Next Friday!)  We've gone through pretty much everything you all have experienced from both patient and caregiver's side.  He's learned to adjust weekly to each new "experience", joking today in a bare whisper, with the radiation oncologist that he had "perfected the art of coughing up mucous"!  (We've embraced the idea of maintaining a sense of humour throughout this process- its helped... most of the time) My question is this: I've read from many of you that the 2-3 weeks post-radiation is worse than during the treatment.  We've been feeling very optimistic because he's handling the treatment better than we expected - He's obviously coughing and choking up the, as he says, "silver dollar size mucous", waking up many times at night to do so. He's been dehydrated twice since he began using the feeding tube at week 4, and once spiked a 103.5 fever w/ dehydration that landed us in the ER at midnight (July 4th) but we've got that under control now with some intense fluid hydration and getting accustomed to the feeding tube ritual. He's controlling his pain pretty well w/ oxycodone and a duragesic patch. And of course the baking soda and salt rinses and taking glutamine and swallowing patented aloe vera juice(Manapol from Carrington).  He's been applying the gel from fresh cut aloe leaves 4 x a day on his neck and supplementing that with Remedy healing ointment-.  He is fatigued and does nap frequently. So, what I'd like to know, and be prepared for, is what the 2-3 weeks post treatment is like and what makes it worse than what we're dealing with now at week 6?The one thing that's gotten us through so much is that I've been reading all of your posts and have been able to anticipate what's next and share that with him.  Anything  you could share would be very appreciated!   We wish all of you the very best! Thanks so much!Christina spiritheart Thu, 10 Jul 2008 00:00:00 GMT you should post this over on the Head and neck boardyou may get more responses.I will tell you what i know 8 weeks pat Tx SCC toncil one nodethe end of Rx is called the Boost and they narrow the feild to the primary location and give it hell for the last few days.the radiation continues to "COOK" for about 2-3 weeks after it has stoppedthe cumulative effect and the weakness of my body had just about had enough and i felt really bad.Also be prepared for a feeling of Abandonment that was very scary to me  for 8 weeks everyone was taking such great care of me seeing a Dr everyday, nurses everywherethen they give you your Mask and say we will see you in Three weeks to see if it has worked?!??!??!Wow now we are on our own, I did not find it easywhat I found helped me:I started to really put a lot of fluids in my peg all night long I would put in 12-16 oz go back to bed 2-3 hours later get up pee put more water in.the faster you get this crap out of  you the better you will feelI also added green things to the Peg any vegetable type  products I used "essentail Greens and mixed it with my Glutimine (Juven) and put it down 3x/day after meals or Cans of Jevity.It does get betterjohn  mtkjohn1 Thu, 10 Jul 2008 00:00:00 GMT sorry about the first line of my postyou are on head and neckway too tired and off to bedjohn  mtkjohn1 Thu, 10 Jul 2008 00:00:00 GMT  On 7/10/2008 spiritheart wrote:First I want to thank all of you, especially all of you "regulars" who have taken the time to answer questions and share your experiences here.   I have never posted a message before but have been following you all religiously since my husband's February diagnosis:  SCC base of tongue w/ bilateral lymph node involvement.  I am amazed at the courage, determination and genuine compassion I've found here on these boards.  My husband has gone through 9 weeks of chemo induction (Cisplatin,Taxotere and 5FU).  He began 32 radiation treatments( with weekly Cisplatin) June 3rd and is 6 treatments away from finishing! ( Next Friday!)  We've gone through pretty much everything you all have experienced from both patient and caregiver's side.  He's learned to adjust weekly to each new "experience", joking today in a bare whisper, with the radiation oncologist that he had "perfected the art of coughing up mucous"!  (We've embraced the idea of maintaining a sense of humour throughout this process- its helped... most of the time) My question is this: I've read from many of you that the 2-3 weeks post-radiation is worse than during the treatment.  We've been feeling very optimistic because he's handling the treatment better than we expected - He's obviously coughing and choking up the, as he says, "silver dollar size mucous", waking up many times at night to do so. He's been dehydrated twice since he began using the feeding tube at week 4, and once spiked a 103.5 fever w/ dehydration that landed us in the ER at midnight (July 4th) but we've got that under control now with some intense fluid hydration and getting accustomed to the feeding tube ritual. He's controlling his pain pretty well w/ oxycodone and a duragesic patch. And of course the baking soda and salt rinses and taking glutamine and swallowing patented aloe vera juice(Manapol from Carrington).  He's been applying the gel from fresh cut aloe leaves 4 x a day on his neck and supplementing that with Remedy healing ointment-.  He is fatigued and does nap frequently. So, what I'd like to know, and be prepared for, is what the 2-3 weeks post treatment is like and what makes it worse than what we're dealing with now at week 6?The one thing that's gotten us through so much is that I've been reading all of your posts and have been able to anticipate what's next and share that with him.  Anything  you could share would be very appreciated!   We wish all of you the very best! Thanks so much!ChristinaHello Christina,First let me say that I am glad to hear that your husband is handling treatment better than expected...that is always good news.I completely agree with John that one of the worst things after treatment is that you have a sense of being alone. No nurses or doctors or techs that you saw daily.  It was a strange sensation, I thought I would want to run out of the place and not look back but I actually cried.  Partially, out of relief but also because even before I left that day I knew I was alone.My experience  was that I foolishly expected  my eating, sleeping, mucus would just get better right away. My doctor never once told me to expect a two week down slide. Never told me about the heavy duty cooking that occured post treatment.  If I hadn't been reading the forum and reading that the two weeks following was going to be tough I probably would have been at the ER several times.  Since there are such great people here I managed through it, reading and asking questions.But on the VERY positive side I am now just about 7 weeks out.  Never had a Peg.  Was always able to take in liquids.  At this point, I am eating ok,,,still a lot of things I can't eat but the difference between a week out of radiation and today are worlds apart.    The mucus in my case is still there but I think I am an exception, as most people have said that clears up after a few weeks, I just haven't had that happen yet.  I've been able to go out to eat as long was I am selective about foods.  And have been to movies, the beach and actually was able  to get on a plane and visit my family in time to celebrate my nephews 4th birthday. Each week gets a little better.Better to be prepared for the two weeks after treatment, even if he doesn't have any major problems. But look forward to getting life back to normal too.  It will happen.   Best to you and yours,,,and everyone here.  D. D1211 Thu, 10 Jul 2008 00:00:00 GMT  On 7/10/2008 spiritheart wrote:First I want to thank all of you, especially all of you "regulars" who have taken the time to answer questions and share your experiences here.   I have never posted a message before but have been following you all religiously since my husband's February diagnosis:  SCC base of tongue w/ bilateral lymph node involvement.  I am amazed at the courage, determination and genuine compassion I've found here on these boards.  My husband has gone through 9 weeks of chemo induction (Cisplatin,Taxotere and 5FU).  He began 32 radiation treatments( with weekly Cisplatin) June 3rd and is 6 treatments away from finishing! ( Next Friday!)  We've gone through pretty much everything you all have experienced from both patient and caregiver's side.  He's learned to adjust weekly to each new "experience", joking today in a bare whisper, with the radiation oncologist that he had "perfected the art of coughing up mucous"!  (We've embraced the idea of maintaining a sense of humour throughout this process- its helped... most of the time) My question is this: I've read from many of you that the 2-3 weeks post-radiation is worse than during the treatment.  We've been feeling very optimistic because he's handling the treatment better than we expected - He's obviously coughing and choking up the, as he says, "silver dollar size mucous", waking up many times at night to do so. He's been dehydrated twice since he began using the feeding tube at week 4, and once spiked a 103.5 fever w/ dehydration that landed us in the ER at midnight (July 4th) but we've got that under control now with some intense fluid hydration and getting accustomed to the feeding tube ritual. He's controlling his pain pretty well w/ oxycodone and a duragesic patch. And of course the baking soda and salt rinses and taking glutamine and swallowing patented aloe vera juice(Manapol from Carrington).  He's been applying the gel from fresh cut aloe leaves 4 x a day on his neck and supplementing that with Remedy healing ointment-.  He is fatigued and does nap frequently. So, what I'd like to know, and be prepared for, is what the 2-3 weeks post treatment is like and what makes it worse than what we're dealing with now at week 6?The one thing that's gotten us through so much is that I've been reading all of your posts and have been able to anticipate what's next and share that with him.  Anything  you could share would be very appreciated!   We wish all of you the very best! Thanks so much!ChristinaHi Christina - First the good news - I am 8 mo post treatment and I have to stop and really think about what those days right after treatment ended were like.  I think the worst for me was my expectation that the influence of the radiation would stop the day of my last treatment - no one mentioned it would continue to worsen for app 3-4 weeks more.  The up side is the nausea from the chemo did begin to subside almost immediately.  I agree w/ John - remember to put down tons of water through the PEG tube.  I had more of a problem w/ hydration after treatment ended and wound up w/ daily hydration infusions and consequently an infection in my port area.  Your hubby can't over hydrate himself (especially during these hot summer months) and he will find drinking water via mouth to be the most difficult thing to accomplish for quite some time.  I still have a great deal of trouble drinking water - it is a 3 step process.  I have to take a drink - hold it in my mouth for a couple of seconds - and then swallow while holding my head perfectly still - otherwise I choke.  The muscles of my throat took a hit from all the radiation and I'm still feeling the effects to a degree.  I had SCC of left tonsil so I'm not sure if your hubby's recuperation will be exactly the same.  I had cisplatin chemo weekly for 5 weeks (last one was cancelled as I wasn't tolerating well).  I had radiation twice daily for 70 treatments (radiation split up to lessen the effect).  The one thing that did continue to worsen after treatment ended was the mucus - there were times it didn't seem like it would ever end but it did.  I went through tons of kleenex and toilet paper though - especially the first month after treatment ended.  I also wound up with thrush about 5-6 weeks after treatment ended.  This is common from what I've read since then on this site.  Keep a close eye on the tongue area for white spots (thrush).  Using a baby toothbrush (4 mo one works best) and brushing 3x a day is really important (even though your hubby is not eating anything via mouth the salivary glands are not working like they used to and that used to be their function - to cleanse the mouth).  I had absolutely no energy and slept a lot but I figured my body needed the rest.  Your husband will make it through but recuperation is slow going - I get impatient until I look at two people I became close to during treatment.  One has cancer of the brain stem that has now met to the hip bone and the other has pancreatic cancer that is a reoccurrence.  They are still fighting their war a year later while I am recuperating.  I honestly can look back at that time as it were a nightmare - one that happened to someone else which is very very good.  I'm sure you will hear from others - and maybe they can remember more.  Oh - 2 other effects of treatment - I have a hearing loss now and my memory really stinks - the doctor told me at my 3 mo check up that was normal so I will deal with it.  Sure beats the alternative.  Diana     Dlynn1210 Thu, 10 Jul 2008 00:00:00 GMT I forgot to mention that your hubby may have to wait a while before he is able to eat again.  When he does he may find his taste buds have changed.  I used to love hot spicy foods but now even ketchup taste hot to me.  Ham is the easiest meat for me to swallow and I eat a lot of mashed pot an gravy - more gravy than I've eaten in years.  Ice cream also goes down well.  It will probably take a lot of experimentation to find out what he can and can't eat.  When days start to look a little dark for him around 2-3-4 week post treatment tell him just to look carefully in front of him - he will see the light at the end of the tunnel.  Diana   Dlynn1210 Thu, 10 Jul 2008 00:00:00 GMT  On 7/10/2008 spiritheart wrote:First I want to thank all of you, especially all of you "regulars" who have taken the time to answer questions and share your experiences here.   I have never posted a message before but have been following you all religiously since my husband's February diagnosis:  SCC base of tongue w/ bilateral lymph node involvement.  I am amazed at the courage, determination and genuine compassion I've found here on these boards.  My husband has gone through 9 weeks of chemo induction (Cisplatin,Taxotere and 5FU).  He began 32 radiation treatments( with weekly Cisplatin) June 3rd and is 6 treatments away from finishing! ( Next Friday!)  We've gone through pretty much everything you all have experienced from both patient and caregiver's side.  He's learned to adjust weekly to each new "experience", joking today in a bare whisper, with the radiation oncologist that he had "perfected the art of coughing up mucous"!  (We've embraced the idea of maintaining a sense of humour throughout this process- its helped... most of the time) My question is this: I've read from many of you that the 2-3 weeks post-radiation is worse than during the treatment.  We've been feeling very optimistic because he's handling the treatment better than we expected - He's obviously coughing and choking up the, as he says, "silver dollar size mucous", waking up many times at night to do so. He's been dehydrated twice since he began using the feeding tube at week 4, and once spiked a 103.5 fever w/ dehydration that landed us in the ER at midnight (July 4th) but we've got that under control now with some intense fluid hydration and getting accustomed to the feeding tube ritual. He's controlling his pain pretty well w/ oxycodone and a duragesic patch. And of course the baking soda and salt rinses and taking glutamine and swallowing patented aloe vera juice(Manapol from Carrington).  He's been applying the gel from fresh cut aloe leaves 4 x a day on his neck and supplementing that with Remedy healing ointment-.  He is fatigued and does nap frequently. So, what I'd like to know, and be prepared for, is what the 2-3 weeks post treatment is like and what makes it worse than what we're dealing with now at week 6?The one thing that's gotten us through so much is that I've been reading all of your posts and have been able to anticipate what's next and share that with him.  Anything  you could share would be very appreciated!   We wish all of you the very best! Thanks so much!ChristinaHi Christina,I finished by last TomoTherapy radiation treatment on December 15, 2007 for treatment for squamous cell cancer of the oropharynx.  I did have surgery to  the right side of my neck in August of '07.  Because of the radiation most of my teeth were surgically removed in Sept of "07- which made it difficult to eat.  I  began my treatments in Oct of '07.  I eventually had a PEG tube inserted on Nov. 2, 2007 and finally had it removed on May 1, 2008.  In January I was unable to swallow anything - not even water - that's called Dysphagia and mine was severe.  I had my first of several esophagus dilitations and worked with a speech therapist for the swallowing problems.  The mucus finally cleared after several months - saliva secretation is pretty normal most of the time.While a doctor may inform you of some things to expect - remembering what you were told is another story.  I might recommend a new book from Plural Publishing "Meeting The Challenges of Orand and Head and Neck Cancer:  A Surviror's Guide by Nancy E. Leupold and James J. Sciubba.  It is available on Amazon.com.  Very informative and I wished I had it at the beginning of my journeywith cancer.  It is pretty comprehensive but I still see some areas they needed to cover more thoroughly.  Another good contact for information if SPOHNC - Support for People with Oral and Head and Neck Cancer.The radiation tech's recommended Aquaphor for my neck - I had very minor problems - for which I am thankful.   Each day is better than the day previous but it has taken me a good 6 months to finally feel pretty good.  I was told, by several who have taken the treatment journey, that the affects of the everything could last a year or more - memory, etc. My first post-treatment PETscan showed no cancer.  I am seceduled for anaother PETscan in September and have no reason to suspect any changes.Best of luck to you and your husband.Sandy  Woodslee Fri, 11 Jul 2008 00:00:00 GMT Your husband's experiences are pretty much like mine. I'm 8 months out of treatment for tonsil cancer (cisplatin and radiation). Like your husband, I tried to maintain a sense of humor, joking (or trying to) with the docs and techs. That helped a lot. I didnt find this forum until I was done with my treatmens, so youre ahead of me on that.Like John said, I got the boost during my last 2 weeks of treatment, and I think that, along with the last dose of cisplatin really did me in for about 4 weeks following the last zap. I was sleeping about 20 hours a day and getting up  to go to the bathroom was about all I could handle.Youve got some good advice here, and it sounds like youre doing well in caring for your husband. He's lucky to have someone like you to care for him. ( Just like I'm lucky to have a wife that was able to care for me).It gets better soon, just not quite as soon as you would like...Best wishes,Mike micromisterphone Fri, 11 Jul 2008 00:00:00 GMT Sorry I didn't get right back to you, we've been transitioning back home after living in Philly for 5 weeks during my husband's radiation.  Thank you all for your responses!   We've been home now for three days and dealing with PEG tube feeding issues and keeping down his food.  The mucous is so bad that he's gagging and vomiting...and of course, dehydration issues again.  But we're slowly getting it under control.  We'll get through these next few weeks I know.  There's too much to look forward to now that these awful treatments are done!  He's chomping at the bit to get out and start working again and hates being too tired to do anything so my job is to keep him from overdoing on those days when he feels like he's got some energy. How long does the heavy thick mucous last? Seems like that's the main thing that makes life miserable right now for him. Blessings to you all! Christina  spiritheart Sun, 20 Jul 2008 00:00:00 GMT  On 7/20/2008 spiritheart wrote:Sorry I didn't get right back to you, we've been transitioning back home after living in Philly for 5 weeks during my husband's radiation.  Thank you all for your responses!   We've been home now for three days and dealing with PEG tube feeding issues and keeping down his food.  The mucous is so bad that he's gagging and vomiting...and of course, dehydration issues again.  But we're slowly getting it under control.  We'll get through these next few weeks I know.  There's too much to look forward to now that these awful treatments are done!  He's chomping at the bit to get out and start working again and hates being too tired to do anything so my job is to keep him from overdoing on those days when he feels like he's got some energy. How long does the heavy thick mucous last? Seems like that's the main thing that makes life miserable right now for him. Blessings to you all! Christina Hi Christina I was on Jevity 1.5 for my PEG tube (which my insurance paid for 100%).  My doctor prescribed Reglan to be taken 1/2 hour before feeding to aid in digestion and I had virtually no problems w/ digestion.  One great thing about the PEG tube is the ability to put water down it on a regular basis to help prevent dehydration. - you can't overdrate.  I had forgotten about it but I did have some problems w/ vomiting in the few weeks after treatment ended (I didn't attribute it to the Jevity but to the massive amount of phlem that was coming up).  As soon as the phlem let up some that problem disappeared.  It kind of worried me at the time but I guess with all the phlem it was to be expected.  Any time I tried getting anything liquid down via mouth it just didn't work - I would choke.  I didn't realize then that water was going to remain the most difficult thing to get down - even today it is worse than many foods.  At least food carries some weight with it to help it go down the right way.  I worked w/ a speech pathologist and had vita stim therapy which helped immensely getting me back to eating food.  She cautioned me about what I drank - not to drink juices for one - for fear of silent aspiration where liquid can go down the wrong way.  She reminded me many times that water was the best thing for me to drink as it would cause little problems if aspiration did occur.  I wish you and your husband the best - better times are ahead.  The day the phlem starts to lessen you will know you have topped the hill and are ready to head back down toward the finish line.  As for the time limit of phlem/mucous, it will last for approximately 6-8 wks and then start to gradually taper off.  That was by far the worst of the after effects for me.  Tell your hubby that we all know how he feels but this is one time that slow and steady really does win the race.  I'm still working on getting my energy level back to norm but I'm so far ahead of where I was 8 months ago that it doesn't bother me anymore (I'm 8 mo post treatment).  Diana   Dlynn1210 Sun, 20 Jul 2008 00:00:00 GMT I forgot one thing - minor probably - but I was told to remain in an upright position for one hour after a feeding - NOT to lay flat under any circumstances.  There were times I was so tired I just wanted to go to bed but after cutting it short one time and having tummy problems, I remained true to that hour time limit in my recliner.  Diana Dlynn1210 Sun, 20 Jul 2008 00:00:00 GMT Thanks Diana,  I do think most of the vomiting is just gagging from the phlegm....occasionally its from too much in his stomach and constipation from the meds, so he's on a lactalose too. I am so in awe of all of you who have been through this.  Watching it is hard enough but I give you all so much credit!  My husband finally figured out about a week ago that the best thing for him was to sleep sitting up in the recliner and never to lie down.  This has really made it easier to sleep, cut down on the mucous at night ( with the help of Tussionex and magic mouthwash) and lets us both get some needed sleep.  Guess this will continue for a while longer.  We're putting most everything through his tube, so lots of water, even some electrolyte solution when he loses a lot in "other ways". He still swallows his aloe juice, some water and even some flat ginger ale.   Thanks again!Christina   spiritheart Mon, 21 Jul 2008 00:00:00 GMT Hi Christine The best part is that this will all be a distant memory before you know it.  As proof, I had totally forgot about the wonderful relationship my recliner and I shared - I put it right out of my mind and only added it as an after thought - how ungrateful of me.  Seriously, I believe God has a purpose for everything and I believe one purpose for being diagnosed with cancer is to help others who are also going through a bad time.  I took my old Cocker who is totally deaf to his doctor last Thur for a check up (last year shortly after my treatment started he tore a ligament in his leg and had to be operated on).  At the end of his checkup, my veternarian gave me a hug and said last year he was worried about Dusty because he didn't know what would happen to him if I didn't make it (I had to think about that one for a minute).  Then he then went on to quote someone (he couldn't remember who) but he said they talked about not fearing illness or depression because you have to live it to be able to understand what others go through.  I thought of everyone on this board for starters.  I pray for everyone on a regular basis knowing that when we win the battle over cancer we become much stronger individuals and appreciate life even more - that is truly a blessing. Take care of yourself (I know you will take good care of your husband) and let us know how you are doing.Diana  Dlynn1210 Mon, 21 Jul 2008 00:00:00 GMT