Broke Down

stevenl

Hal61 said:

Broke Down, Bummer
Hi Steve, my machine was broken down all week the week of the 18th I believe. I didn't know because I had checked myself into the hospital the first two days of that week, and was not in shape to take the treatments the rest of the week. My Doc was not concerned either, when I returned. She didn't even mention the machine had been broken, just said the break was no great deal and lets get to the finish. I have four left next week, then and done with chemo and rads. I'm getting weak now. I neve knew why they kept asking me about fatigue, until this week. So hang in, Like Hondo emphasizes, it'll get better.

Hal61

ONE
Hi Hal,

Well I slipped one in on Friday, and was supposed to do 2 on Saturday, but the machine broke down again. I have chemo on Mondays, which takes 5 to 6 hrs., so maybe thet will get it fixed by that time.
My onco man was there Saturday morning and told us of his plan B. He does have 2 other machines but they are not as accurate as the Novalis IMRT he is using on me now. About a 5 to 7% falloff. That ain't what I signed up for and I will wait for the precise machine to be fixed, thank you. I am 3 behind and I can double up on a few days to catch up. As long as there is 6 hrs. between treatments I can do 2 a day. My target date for completion is April 9th, so I will do what is necessary to catch up.

Best,
Steve

Scambuster

stevenl said:

ONE
Hi Hal,

Well I slipped one in on Friday, and was supposed to do 2 on Saturday, but the machine broke down again. I have chemo on Mondays, which takes 5 to 6 hrs., so maybe thet will get it fixed by that time.
My onco man was there Saturday morning and told us of his plan B. He does have 2 other machines but they are not as accurate as the Novalis IMRT he is using on me now. About a 5 to 7% falloff. That ain't what I signed up for and I will wait for the precise machine to be fixed, thank you. I am 3 behind and I can double up on a few days to catch up. As long as there is 6 hrs. between treatments I can do 2 a day. My target date for completion is April 9th, so I will do what is necessary to catch up.

Best,
Steve

Twice a day
Hi Steve,

I wrongly assumed if you used the IMRT machines you did get 2 doses per day. I had 70 sessions over the 35 days (5 days a week). Missed one or two sessions during that time due a holiday and was too sick for one. As you said, as long as there were 6 hours between sessions, then 2 was the standard.

My analogy from the twice a day deal was it was like pulling weeds from a seed bed more often when they're small so the soil wasn't ripped up as opposed to waiting till they get bigger and need more ripping.

Good that you sticking with your guns and waiting for the IMRT machine to get fixed. Not long to go now. You seem to be doing really well.

Cheers
Scambuster

stevenl

Scambuster said:

Twice a day
Hi Steve,

I wrongly assumed if you used the IMRT machines you did get 2 doses per day. I had 70 sessions over the 35 days (5 days a week). Missed one or two sessions during that time due a holiday and was too sick for one. As you said, as long as there were 6 hours between sessions, then 2 was the standard.

My analogy from the twice a day deal was it was like pulling weeds from a seed bed more often when they're small so the soil wasn't ripped up as opposed to waiting till they get bigger and need more ripping.

Good that you sticking with your guns and waiting for the IMRT machine to get fixed. Not long to go now. You seem to be doing really well.

Cheers
Scambuster

2 a days
Hey Scam,

I think that most here in America get 1 treatment per day. I don't remember, but tell me again, where do you live? So also tell me if you would, what was 2 treatments like per day? I mean we don't know what the difference in strength of treatment may be but I am just curious. If I thought for one minute that I could handle 2 per day, I would do it, just to get this over with. I am only getting 33
treatments and have completed 16. And it's strange that after missing most of this weeks treatment I know what everybody means by, you continue to cook. Mild as it may be I can feel my condition worsen.
No it is not bad yet but I can feel the change.

Best to ya Scambuster,
Steve

Fire34

stevenl said:

2 a days
Hey Scam,

I think that most here in America get 1 treatment per day. I don't remember, but tell me again, where do you live? So also tell me if you would, what was 2 treatments like per day? I mean we don't know what the difference in strength of treatment may be but I am just curious. If I thought for one minute that I could handle 2 per day, I would do it, just to get this over with. I am only getting 33
treatments and have completed 16. And it's strange that after missing most of this weeks treatment I know what everybody means by, you continue to cook. Mild as it may be I can feel my condition worsen.
No it is not bad yet but I can feel the change.

Best to ya Scambuster,
Steve

2 a day
Stev
I am from the Chicago area. I had two a day for a total of 49 treatments. Missed one due to Thanskgiving. The two a days for me didnt start to get bad until about theend of the 2nd beginnig of the 3rd week. That was when the mucous & throat started closing off making it hard to swallow. I was inpatient during those weeks of radiation though, not having to travel.
Good Luck Steve Best Wishes
Dave

Kent Cass

Fire34 said:

2 a day
Stev
I am from the Chicago area. I had two a day for a total of 49 treatments. Missed one due to Thanskgiving. The two a days for me didnt start to get bad until about theend of the 2nd beginnig of the 3rd week. That was when the mucous & throat started closing off making it hard to swallow. I was inpatient during those weeks of radiation though, not having to travel.
Good Luck Steve Best Wishes
Dave

2/day
Two rads/day? Do wonder how long your sessions were, and in how many places you "got it," per session. I never did get any kinda info on exactly how much rads I got, but I do know in how many places, and how long I was getting zapped in each of those places, which resulted in the total time/session. And you were getting a Chemo med(s) at the same time? Please inform.

kcass

Hal61

Scambuster said:

Post Rads Recovery Expectations.
Hi Hal and gang nearing the end of Rads.

Glad to hear you are almost there Hal. Just be aware that you may continue to feel like S____ for a while once your Rads stop. I was so relieved when I finished only to go home from hospital 3 days later to find I actually got worse. I was readmitted 10 days later in bad shape.

The fact that I had great expectations must have contributed somewhat to the severe deflation and depression I suffered. Hopefully you will start to improve quickly but many of us went through a 'J' Curve post treatment. Keep a check on your mental state and if you feel like you're heading into a tail spin, let your doctors know. I wasn't sleeping, couldn't eat, puking, pain, nausea, hot flashes, cold flashes, and had a terrible feeling I was losing the fight. When I was readmitted, I was treat for depression and they put me on some meds which turned me around within a couple of days and I haven't looked back since. Point is if this does happen, it's easily treatable. i also believe the solid 9+ hours of sleep the meds did for me helped a lot in my recovery as sleep is essential for healing.

Measure your recovery by the week not the day and try to get into a routine or normalcy i.e. go out for a walk, sit in a cafe, read a book a few hours a day and start rebuilding the battered body. I am just over 5 months out now and feeling great though I did struggle for quite a while in the early months. I hope you don't need this advice but I reckon if someone had told me the above I would have had more peace of mind.

All the best
Scambuster

Hi Steve, Scam, and Everyone,
Hope your machine issues resolve themselves this week Steve! I know that when I got passed the mid point of my 35 rads I was less anxious as I was able to count down the rad days to go, instead of getting to half way. The second half just seemed to go faster regardless of the shape I was in, and I hope it works that way for you,

Thanks for the forewarning Scambuster. I was actually feeling better after the seven day layoff, or starting to, but knew I would have to revisit the throat, mucous, and general healing complications when I got back to my last rads--which is where I'm at. I especially value your advice on developing new routines. I know that watching TV, sleeping, and attending to my immediate medical needs can't make much of a life, so developing a "new normal" in that sense is going to be essential. I'm thinking about things I need to do, and a new daily habit or two that would move me along will be a priority as soon as I finish up this coming week and feel I'm ready and able to kickstart my life.

best to all, Hal

Scambuster

Kent Cass said:

2/day
Two rads/day? Do wonder how long your sessions were, and in how many places you "got it," per session. I never did get any kinda info on exactly how much rads I got, but I do know in how many places, and how long I was getting zapped in each of those places, which resulted in the total time/session. And you were getting a Chemo med(s) at the same time? Please inform.

kcass

Twice a Day routine.
Hi Guys,

As said I got it twice a day with a minimum 6 hour gap. I had the IMRT machine. Sessions lasted about 20 minutes and I recall i used to count about 18-or 20 locations from the whirring and grunting of the Machine, but I rarely kept count as I would zone out.

Comparing my condition with say Steve's, i was in bad shape going into week 3. I did have some complications as I got a PEG at that time and a free dose of Hospital Pneumonia. I was hospitalized around the end of week 3 and stayed in till the end so about 4+ weeks.

At times they had to wheelchair me to and from my room down to the rads clinic. I was not a well boy. Family flew up from Australia and friends came by thinking I was checking out ... permanently. That may be the effects of twice a day sessions although a few others on my schedule managed to go home after each session and didn't need the PEG. They were also pretty sick but not as bad as me. I was holed up in a hotel during the week and only went home for the weekend for the first 3 weeks till I had a bad melt down with pain and vomiting. When you puke and aren't sure you lost your pain killers, it's dangerous to retake them in case you OD. On that occasion I did lose them and the pain almost sent me into shock. I was admitted and shot up with the magical Pethadene.

On the Chemo - I was getting Erbitux but it was only once a week and took about 90 minutes. Apart from a bad face peel, I don't recall bad effects from Erbitux though it is hard to know what is causing what between Rads and Chemo.

Steve to answer you question, I live in China but had treatment in HK. It only takes about 1.5 maybe 2 hours to get from my home in China to the Hospital but that time included going through 2 lots of immigration either way and then ferries or trains and buses and/ or taxis so it wasn't a relaxing commute by any stretch.

Cheers
Scambuster

POSTSCRIPT on RECOVERY (Take it or leave it)

As said above, I was in pretty bad shape during and after treatment, lost 44+ lbs was totally reliant on the PEG. I was open to just about anything if it could help me. I did consult with Naturopaths before, during and after treatments. I believe the nutritional supplements, vitamins and diet have helped enormously in my recovery. I was also given Homeopathics to help the healing and stop the continued burning, and also helped my during the first part with emotions after diagnosis.

I even had friends call up from France, New Zealand and Australia who put me in contact with 'Burn Witches'. These are people who have a gift where they can assist burn victims when contacted very soon after an event. They are not 'charlatans' or freaks, just nice normal people who have a bizzare gift. No idea how it works or how much it helped but as I said, i was desperate and open to anything. I have seen results year ago and they do have this ability.

I also believe the meds i was given after I finished treatment, to treat what turned out to be depression (& anxiety) have helped as I started to get a solid 8-10 hours sleep a night. During the ordeal, i hardly slept in 2 and 1/2 months as I had 1. the shock of diagosis, 2) surgery a week later where I got filled up for 10 days with Morphine and all the other Pain meds, 3) got released and same day my wife gave us a new baby boy, and 4) I also had my 'load dose' of Erbitux that week and then 5) started Rads a week later. It was a real Party ... NOT.

Anyway the message here is that all of you in recovery need the right nutrition to give your body what it needs to heal and rebuild itself, and you also need good sleep. I hear many of you hitting the coffee and other items (junk food) that are not conducive to healing, and wonder if that is slowing recovery ?? I don't know, but I have subscribed as best I can to whole and raw foods, as outlined in "The Cancer Diet'. I do stray as I am no saint but over all I have a very healthy diet. The supplements I take were prescribed to assist healing, immune building, anti-oxidants, essential vitamins and minerals and dietary assistance ie Co-Enzymes.

I am happy to say I feel great now with the only real bummer being the lack of Saliva. Anyway I hope this little blast may be food for thought for my fellow survivors. Keep up the fight.

Kent Cass

Scambuster said:

Twice a Day routine.
Hi Guys,

As said I got it twice a day with a minimum 6 hour gap. I had the IMRT machine. Sessions lasted about 20 minutes and I recall i used to count about 18-or 20 locations from the whirring and grunting of the Machine, but I rarely kept count as I would zone out.

Comparing my condition with say Steve's, i was in bad shape going into week 3. I did have some complications as I got a PEG at that time and a free dose of Hospital Pneumonia. I was hospitalized around the end of week 3 and stayed in till the end so about 4+ weeks.

At times they had to wheelchair me to and from my room down to the rads clinic. I was not a well boy. Family flew up from Australia and friends came by thinking I was checking out ... permanently. That may be the effects of twice a day sessions although a few others on my schedule managed to go home after each session and didn't need the PEG. They were also pretty sick but not as bad as me. I was holed up in a hotel during the week and only went home for the weekend for the first 3 weeks till I had a bad melt down with pain and vomiting. When you puke and aren't sure you lost your pain killers, it's dangerous to retake them in case you OD. On that occasion I did lose them and the pain almost sent me into shock. I was admitted and shot up with the magical Pethadene.

On the Chemo - I was getting Erbitux but it was only once a week and took about 90 minutes. Apart from a bad face peel, I don't recall bad effects from Erbitux though it is hard to know what is causing what between Rads and Chemo.

Steve to answer you question, I live in China but had treatment in HK. It only takes about 1.5 maybe 2 hours to get from my home in China to the Hospital but that time included going through 2 lots of immigration either way and then ferries or trains and buses and/ or taxis so it wasn't a relaxing commute by any stretch.

Cheers
Scambuster

POSTSCRIPT on RECOVERY (Take it or leave it)

As said above, I was in pretty bad shape during and after treatment, lost 44+ lbs was totally reliant on the PEG. I was open to just about anything if it could help me. I did consult with Naturopaths before, during and after treatments. I believe the nutritional supplements, vitamins and diet have helped enormously in my recovery. I was also given Homeopathics to help the healing and stop the continued burning, and also helped my during the first part with emotions after diagnosis.

I even had friends call up from France, New Zealand and Australia who put me in contact with 'Burn Witches'. These are people who have a gift where they can assist burn victims when contacted very soon after an event. They are not 'charlatans' or freaks, just nice normal people who have a bizzare gift. No idea how it works or how much it helped but as I said, i was desperate and open to anything. I have seen results year ago and they do have this ability.

I also believe the meds i was given after I finished treatment, to treat what turned out to be depression (& anxiety) have helped as I started to get a solid 8-10 hours sleep a night. During the ordeal, i hardly slept in 2 and 1/2 months as I had 1. the shock of diagosis, 2) surgery a week later where I got filled up for 10 days with Morphine and all the other Pain meds, 3) got released and same day my wife gave us a new baby boy, and 4) I also had my 'load dose' of Erbitux that week and then 5) started Rads a week later. It was a real Party ... NOT.

Anyway the message here is that all of you in recovery need the right nutrition to give your body what it needs to heal and rebuild itself, and you also need good sleep. I hear many of you hitting the coffee and other items (junk food) that are not conducive to healing, and wonder if that is slowing recovery ?? I don't know, but I have subscribed as best I can to whole and raw foods, as outlined in "The Cancer Diet'. I do stray as I am no saint but over all I have a very healthy diet. The supplements I take were prescribed to assist healing, immune building, anti-oxidants, essential vitamins and minerals and dietary assistance ie Co-Enzymes.

I am happy to say I feel great now with the only real bummer being the lack of Saliva. Anyway I hope this little blast may be food for thought for my fellow survivors. Keep up the fight.

Yes- NUTRITION
An excellent post, Scambuster:

The Burn Witches- that is so heart-warming to hear that such as they exist. Burn victims- I bore witness to one who was over 80%, and even after two years of plastic surgery every two months...The Nurses knew him as Peanuts, after the cartoon character. I was only in the room with him for 20-minutes, Scambuster, before being sent down to x-ray. His Mom had talked to mine, and later the Nurses had told me about him. I had my own major post-accident issues that had me on the Op table 23 times by the time of one-month after my 16th Birthday. And it was the 20-minutes, Scambuster, which eliminated all the self-pity I had thought was okay for me to have. Being a fire victim can be most trying, and to know that such a group of Angels/Witches exists to help those victims= truly is heart-warming to one who knows of how bad it can be for the most critical of fire victims. True Angels, they are.

Accelerated delivery of Cisplatin and FU5 for me, as you likely know of. PEG before treatment, and the Chemo Dr. told me with my first visit that they'd have me on Morph, which started early in week #2. And, YES- NUTRITION IS MOST-CRITICAL TO RECOVERY. Nobody can convince me of otherwise- the Nutrition gives the body the ammo to fight the fight. Now a 16+-month Survivor, who only ingested 4.0 formula from weeks #2-#8, along with the magic mouthwash and meds, I have become a chef-style salad fanatic who has regained all the weight he had lost.

Great to hear that your only bummer is lack of Saliva. Have you noticed the loss of gum tissue?

kcass

staceya

Scambuster said:

Post Rads Recovery Expectations.
Hi Hal and gang nearing the end of Rads.

Glad to hear you are almost there Hal. Just be aware that you may continue to feel like S____ for a while once your Rads stop. I was so relieved when I finished only to go home from hospital 3 days later to find I actually got worse. I was readmitted 10 days later in bad shape.

The fact that I had great expectations must have contributed somewhat to the severe deflation and depression I suffered. Hopefully you will start to improve quickly but many of us went through a 'J' Curve post treatment. Keep a check on your mental state and if you feel like you're heading into a tail spin, let your doctors know. I wasn't sleeping, couldn't eat, puking, pain, nausea, hot flashes, cold flashes, and had a terrible feeling I was losing the fight. When I was readmitted, I was treat for depression and they put me on some meds which turned me around within a couple of days and I haven't looked back since. Point is if this does happen, it's easily treatable. i also believe the solid 9+ hours of sleep the meds did for me helped a lot in my recovery as sleep is essential for healing.

Measure your recovery by the week not the day and try to get into a routine or normalcy i.e. go out for a walk, sit in a cafe, read a book a few hours a day and start rebuilding the battered body. I am just over 5 months out now and feeling great though I did struggle for quite a while in the early months. I hope you don't need this advice but I reckon if someone had told me the above I would have had more peace of mind.

All the best
Scambuster

Thanks
I agree. I have been done since March 9. It is so wonderful to have this site, so you do not feel alone with all the things related to this diagnose that no one who has not traveled this path could not relate to. Gagging, coughing coaxing food past the throat troll, etc.. Thanks ALL

staceya

Fire34 said:

2 a day
Stev
I am from the Chicago area. I had two a day for a total of 49 treatments. Missed one due to Thanskgiving. The two a days for me didnt start to get bad until about theend of the 2nd beginnig of the 3rd week. That was when the mucous & throat started closing off making it hard to swallow. I was inpatient during those weeks of radiation though, not having to travel.
Good Luck Steve Best Wishes
Dave

I also started feeling bad
I also started feeling bad about week 3. Today was my best day since before treatment. Taste is coming back in some items and I am so grateful.

Scambuster

Kent Cass said:

Yes- NUTRITION
An excellent post, Scambuster:

The Burn Witches- that is so heart-warming to hear that such as they exist. Burn victims- I bore witness to one who was over 80%, and even after two years of plastic surgery every two months...The Nurses knew him as Peanuts, after the cartoon character. I was only in the room with him for 20-minutes, Scambuster, before being sent down to x-ray. His Mom had talked to mine, and later the Nurses had told me about him. I had my own major post-accident issues that had me on the Op table 23 times by the time of one-month after my 16th Birthday. And it was the 20-minutes, Scambuster, which eliminated all the self-pity I had thought was okay for me to have. Being a fire victim can be most trying, and to know that such a group of Angels/Witches exists to help those victims= truly is heart-warming to one who knows of how bad it can be for the most critical of fire victims. True Angels, they are.

Accelerated delivery of Cisplatin and FU5 for me, as you likely know of. PEG before treatment, and the Chemo Dr. told me with my first visit that they'd have me on Morph, which started early in week #2. And, YES- NUTRITION IS MOST-CRITICAL TO RECOVERY. Nobody can convince me of otherwise- the Nutrition gives the body the ammo to fight the fight. Now a 16+-month Survivor, who only ingested 4.0 formula from weeks #2-#8, along with the magic mouthwash and meds, I have become a chef-style salad fanatic who has regained all the weight he had lost.

Great to hear that your only bummer is lack of Saliva. Have you noticed the loss of gum tissue?

kcass

Telepathic Kent !
HI Kent and thanks for your kind response.

Every time I have seen your posts I have wanted to asked how your gums were fairing as I remember months back hearing of your struggle. I fortunately have had no issues there at all. I keep a rigorous teeth cleaning regime and use GC Gel at night (Calcium Replacement), use Biotine Toothpaste and mouth rinse, so hopefully my teeth will see me through.

How are things going now with the gums ?? Any improvement ?

I have mentioned many time here about L Glutamine and it's strong healing properties. Not sure if you've given that a try. It was initially given to me to help the Mucosa heal and I also discovered it neutralized the burning post treatment.

Kent, I was amazed to hear you had suffered as a burn victim and at a young age (not that any age is good for suffering). You obviously got through that and have shown that you are a fighter. It is difficult to try and rationalize why some of us get more curve balls than others. Sometime there just is no clear answer. Some of our friends here have and are suffering much worse than I did and I certainly thank my lucky stars that I came through this last ordeal. To all those in the midst, just try and believe that you will get through and be able to look back on this as a bad memory.

Stay well and keep getting better Kent. Now I want to hear soon that your PEG is coming out !!

Cheers
Scambuster

Kent Cass

Scambuster said:

Telepathic Kent !
HI Kent and thanks for your kind response.

Every time I have seen your posts I have wanted to asked how your gums were fairing as I remember months back hearing of your struggle. I fortunately have had no issues there at all. I keep a rigorous teeth cleaning regime and use GC Gel at night (Calcium Replacement), use Biotine Toothpaste and mouth rinse, so hopefully my teeth will see me through.

How are things going now with the gums ?? Any improvement ?

I have mentioned many time here about L Glutamine and it's strong healing properties. Not sure if you've given that a try. It was initially given to me to help the Mucosa heal and I also discovered it neutralized the burning post treatment.

Kent, I was amazed to hear you had suffered as a burn victim and at a young age (not that any age is good for suffering). You obviously got through that and have shown that you are a fighter. It is difficult to try and rationalize why some of us get more curve balls than others. Sometime there just is no clear answer. Some of our friends here have and are suffering much worse than I did and I certainly thank my lucky stars that I came through this last ordeal. To all those in the midst, just try and believe that you will get through and be able to look back on this as a bad memory.

Stay well and keep getting better Kent. Now I want to hear soon that your PEG is coming out !!

Cheers
Scambuster

Answers
My gums have settled to about the same condition, now, for over the last month. Shocked me at first to be able to see the skeletal white thru the thinner skin, but so far the only places that broke-thru the skin were on the inside of the mouth below my back lower teeth.
As it was explained to me- I wasn't actually losing any more gum tissue: what I was seeing was the true damage done to my gums, with the swelling of that gum tissue being reduced to nothing, and revealing the actual gum loss that had been hid by the swelling. Did get and have used the Glutamine boughten at a Natural Food store in the Quad Cities. Thank you.

No- I am not the fire victim, Scambuster. Another teenager, who I was in the room with for only some 20-minutes, who the Nurses called Peanuts, was the victim. Sort of thing one cannot forget, you know. Impossible to step into his shoes, and face what he had gone thru, where he was, and what lie ahead for him. That was over 40 years ago, and still have not forgotten those 20-minutes in the room with him. Those Witches/Angels must be some kinda special people, Scambuster.

As for the PEG- you and me both, my friend.

kcass

deb5fun

micktissue said:

Steve
The machine broke down on me twice but they were able to fix so I didn't have to miss a treatment. Both times I was under the mask about 40 minutes. Ugh.

Thinking of you buddy. Hang in there.

Mick

under the mask???
40 minutes under the mask? Oh man, the thought gives me chills! every time our machine broke down, I just went home. Tacked it on to the end. Luckily it was only 3 times, I think total. I had to add on for Thanksgiving, Christmas, and New Year's, too, so I was never sure when I'd finish until right there at the end.