Thank you for being here ...from a newbie!

Missy3
Missy3 Member Posts: 14 Member

Hi all,

This is my first post but I have been hanging out on this forum for a few weeks.   I have gained so much valuable info from everyone on this forum.   I just can't thank you enough!

My story is much the same as most here regarding the delay in diagnosing my anal cancer.   Looking under every rock except the one linked to the "hemmorrhoid". Which of course it wasn't. 

My anal cancer is stage 3b. T4 N2 M0

I have had 13 rounds of radiation and one round of mitomycin and 5FU.  Next round of chemo is a week from Monday.   I have already been hospitalized twice.  Once because the tumor was bleeding excessively.  No transfusion was necessary as it stopped and my blood counts came up.  Then during chemo I had a gallbladder attack that landed me in for a few days for that to resolve and diagnose Then required rehydration and pain control.   

So needless to say I have gotten off to a rocky start.  

I have only been able to work a few hours since this had begun which had been quite frustrating.   I do have intermittent FMLA   But at this rate I am concerned it won't be intermittent.    From many of the posts I have read here, it seems that many have experienced the same.   I know that the most important goal is the finish line and completion of treatment but I am shocked how hard trying to work is becoming.   If it had not been for this site, I would probably be depressed that something was really going array with tx.    I was encouraged to keep on working but rest when necessary during tx by my oncology and rad/onc. Mds.    I really wished I had been more prepared for how harsh this treatment is.  I know I haven't seen anything yet.   That's what concerns me.   I should be learning this from my medical professionals.   How shocking this must be for those that have never come to the forum  I know not everyone will have the same experiences but preparation is key to piece of mind.  

Oh well,   That's my rant for now.  

Thank you again for being there guys !!!!!!!!

Missy

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Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    Missy3....

    Welcome, but as it seems I say way too much, so very sorry that the need to welcome another is here. That being said, so very thankful that we are here for each other.

    I was dx with Stage3b 3 1/2 years ago. I too was hospitalized early on and eventually was admitted to a nursing home temporarily. (I do have an ostomy and the radiation had caused some complications and this was my best option at the time) None the less, personally I am thankful that I was not working at that point as there is no way I could have. I know some who have adjusted their work schedules to shorter days and part time hours and somehow managed to tough it out, but my advice is that if at all possible try to take a leave.

    If this is not an option, when not working focus on rest and nutrition, and almost nothing else. This treatment is brutal, but we (and you) are strong and one day soon this will be in your past.

    I was not aware of this forum during treatment, and you are so right, I should have been learning things from my medical team.....but unfortunatly there seems to be little communication regarding treatment of side effects, so glad you are here! Do not hesitate to ask anything that concerns you, as you have seen there is nothing off limits and usually someone will have some helpful hints. For now, stay hydrated, eat lots of protien for healing such as greek yogurt, rest when you can, sitz baths and hand held shower heads are extremely helpful on a sore bottom, and for me, a regular pain med routine was a must.

    Congratulations on the first leg of this journey.......one day at a time and soon you'll be there!

    katheryn

  • pializ
    pializ Member Posts: 508 Member
    eihtak said:

    Missy3....

    Welcome, but as it seems I say way too much, so very sorry that the need to welcome another is here. That being said, so very thankful that we are here for each other.

    I was dx with Stage3b 3 1/2 years ago. I too was hospitalized early on and eventually was admitted to a nursing home temporarily. (I do have an ostomy and the radiation had caused some complications and this was my best option at the time) None the less, personally I am thankful that I was not working at that point as there is no way I could have. I know some who have adjusted their work schedules to shorter days and part time hours and somehow managed to tough it out, but my advice is that if at all possible try to take a leave.

    If this is not an option, when not working focus on rest and nutrition, and almost nothing else. This treatment is brutal, but we (and you) are strong and one day soon this will be in your past.

    I was not aware of this forum during treatment, and you are so right, I should have been learning things from my medical team.....but unfortunatly there seems to be little communication regarding treatment of side effects, so glad you are here! Do not hesitate to ask anything that concerns you, as you have seen there is nothing off limits and usually someone will have some helpful hints. For now, stay hydrated, eat lots of protien for healing such as greek yogurt, rest when you can, sitz baths and hand held shower heads are extremely helpful on a sore bottom, and for me, a regular pain med routine was a must.

    Congratulations on the first leg of this journey.......one day at a time and soon you'll be there!

    katheryn

    Missy3

    Hi Missy & welcome to our clan (although I am sorry for your need to find us), but as you are here anyway, you can see how helpful everyone is. 

    I am so very thankful I found it & another UK site before I started treatment. There is no way my oncologist could have given me the knowledge to help myself in the way I needed to. It's an experiential thing! That said, she was wonderful in prescribing whatever I needed which was informed by my 'research'. 

    I didn't work during treatment.  My major symptom prior to diagnosis was fatigue, so by the time I was diagnosed & started treatment,  I had already been off work 5 months. I couldn't have worked during treatment due to the fatigue & way my body functioned. If I ate anything my body couldn't handle, I would have an immediate need for the bathroom (diarrhoea), I ate a low fibre diet, but any fat & it triggered one of those urgent visits. Plus I work in s people industry, so needed to protect myself from infection. Oh yes, & the pain from the burns. I was one of the lucky ones who didn't have severe burns, but nevertheless,  it makes sitting pretty uncomfortable,  and sitting (or reclining on one cheek) was the best I could do. I hope you are able to take some time out as it will aid your recovery. Even though my burns weren't too bad, there's no mistaking that the treatment is harsh. Thankfully it's of short duration, but it takes its toll. To have concurrent chemotherapy & radiotherapy exacerbates the symptoms of both. Do not underestimate it! But the goid news is that the treatment has a high success rate (I was 3A & just had a clear ct scan 20 months post treatment). :

    So good luck. If you have any queries, don't be shy. Nothing is off limits here & so many people willing to help.  Not long now until you are past the halfway mark (I had 28), then it's a homeward run.

    Liz x

  • mp327
    mp327 Member Posts: 4,440 Member
    Hi Missy

    I'm sorry you've had to find your way here, but as you can already see, the support is wonderful.  While this treatment is relatively short, it is brutal, which is, IMO, why the doctors are hesitant to give patients too much info ahead of treatment, knowing that some people will not go through with it.  However, there are plenty of us here who went through it, survived it, and are now thriving.  It has a high success rate, so hold onto that, knowing that once you are on the other side of it, you will be rid of this disease.  I am a 6-year survivor.

    Since it's been such a long time since I went through this treatment, some of my memories of it have faded.  Therefore, I hesitate to give too much advice these days.  However, one very important thing is to stay well-hydrated.  It's very important.  You may find some great tips on dealing with side effects on this site:

                                                                                      www.analcancerhelp.info 

    It gives some great information, compiled by a survivor, based on tips from lots of other survivors.  I hope you'll find it to be a good resource.

    As for leave from work, I can't really speak to that.  I was fortunate in that I was not employed at the time of diagnosis.  I know some people continue to work through this, but others cannot.  I would not have been able to.  I hope you can work something out with your employer.

    I wish you all the very best and hope that you'll keep us posted on how things are going for you.  There will be tough days, just as you've already found out, but take it one day at a time and soon you'll be crossing the finish line.  I wish you all the very best.

    Martha

  • jcruz
    jcruz Member Posts: 379 Member
    it is rough

    Hi Missy

    I wouldn't say my doctors sugar-coated anything but they also didn't give all of the worst case scenarios.  Maybe just to spare me the anticipatory anxiety.  I was not working as treatment began because I'd already had a surgery the month before.  I was fortunate to have a large bank of sick leave and vacation that got me through 4 months, then I went on disability for 3 more.  There is just no way I could have gone back to work any sooner than I did.  I couldn't sit properly even with my doughnut cushion for more than a few minutes.  And I had extreme fatigue and some serious chemo brain.  I hope that you will be able to take the necessary time off to rest and heal now and after treatment.

    Keep in touch with us and let us know how you are doing.

    Janet

  • sandysp
    sandysp Member Posts: 868 Member
    Believe me, that was not a rant!

    Hi and welcome. I chuckled at what you thought was a rant. Stick around:-) We have had ranters (sometimes moi) and apparently you aren't one of them. That you can be so clear and concise at this stage of treatment you are in, when you must be terribly uncomfortable is truly remarkable.

    It sounds like you need to give yourself permission to be putting Rest, doctors appointments, treatments and more rest first in your life. If nothing else follows, that's because you may just not have enough energy or concentration for anything else. 

    I attended an MSKCC conference on Anal Cancer and they said it is the most "hellish" treatment they give there (primarily because of lack of research on better, less brutal and effective treatments). But the good news they went on to say is it is highly effective and does not last as long as other cancer treatments, like Breast Cancer, which truly is a nightmare to behold.

    Breast Cancer patients, though, by contrast, seem to have treatments that allow them to continue working. So it's hard not to be compared or to compare ourselves with this cancer survivor or that cancer survivor but it's all about the treatment. You also were very sick when you were diagnosed. You didn't get that sick over night and it will take a while to get well. 

    I look back on it and before my diagnosis, realize that I was working in agony, drinking more wine to keep going with dinner preparation, clean up, etc. after a long day, trying to be the person I was for my husband but nothing worked. Not only my health but my marriage was crumbling. I was really in pain down my legs, sick a lot with lung inflammations, irritable from the steroid treatment and much like you, very ill before I passed blood and with great relief called my GI for help. Some people think it's horrifying to get a definitive symptom like that, but for me it was really a relief. Even thinking I might die was a relief.

    But you, like the rest of us, are on the recovery road now and that needs to be first and foremost. We all want you to love yourself, and put your self first without guilt. Learn to ask for help. Everything will fall into place. Three years later, I realize how much better life is for me now, even my marriage, my weight, my exercise program, my friendships and my much treasured sobriety as much as I loved wine and/or cocktails. Because they have no nutritional value, they are out and I don't miss them.

    Good luck. Hang in there and please, stay close to us.

    All the best,

    Sandy

  • qv62
    qv62 Member Posts: 434 Member
    Missy3

    Welcome, sorry to hear you are having a rough time but it appears you are almost half way through treatment. We are all here for you so ask and rant away. I did not work during treatment which ended in June but I am back at work now and the fatigue is truly a major obstacle. I just keep telling myself this is all temporary. Hope you got to enjoy your weekend without treatment.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Greetings

    Greetings, Missy3, so sorry to meet you here!

    But now that you are here, I understand what you say about being ill prepared. The radiation oncologist gave me a lot of literature to read from the NIH, etc, and even that bypassed or only light touched on some of the appalling side effects. I think that we should be assigned a "cancer mentor" or "cancer buddy" if only to tell us that what we are going through isn't unexpected. Short of that, this forum fills the role. I think the medical professions get kinda jaded because they deal with cancer treatment every day and it's the same-old same-old to them. They forget what a foreign territory it is to most of us.

    My oncologist won't talk about what's next if the chemo/radiation fails because "it's something that I may never have to think about".

    I wasn't working, either, but remained in absolute awe throughout of other cancer patients I met that were abole to drive themselves to appointments and then went off to work. The kind of cancer and treatment prescribed make the big difference.

    My radiation oncologist told me that pelvic and head/neck radiation are the most brutal areas to be treated. (One patient of his that I met had cancer of the tonsils - his burns, both inside and out, were horrifying. He could barely speak or swallow and had thick, tenacious mucous to try to cough up constantly. He lived on Boost for months. So, anal cancer patients aren't alone.) The doctor told me he'd gladly take a job flipping burgers if it meant that no one would need radiation treatment anymore.

    If you need to take time off from radiation, don't worry. Do what you need to do. It's the total amount of radiation received; it's not a race to the finish.

    eithaK is absolutely correct when she says that rest and nutrition are your priorities. There will times when you have to force yourself to get essential foods and fluids in. I read a big article on sleep science in Time Magazine a few years back. Your body cells heal themselves only during sleep. So, lie down already!

    I was hospitalized three times for neutropenic fevers, receiving multiple IV antibiotics. My WBC was down to 0.2 at one time in spite of receiving Neupogen daily (my bone marrow took a vacation). The skin on my bumper sloughed off in bloody sheets. I expelled many, many industrial drums worth of neon yellow watery enteritis stools over several months. For a brief time, I was on morphine before I could cut back down to Fentanyl. During my last hospitalization, I received two units of whole blood and 2 of platelets. I felt like an engorged tick!

    No, I was very unprepared and felt utterly alone. But the thing of it is that there are people who have it even worse. And there are those who have a much easier time, too. I hope you are one of those.

    Recovery is no picnic, either. It's taking much longer to recover than I naievely thought it would. I am getting cancer rehabilitation through the hospital's outpatient PT department. While my body is getting stronger, it's my "working memory" that worries me. The speech therapist says that my memory seems to be intact, but my ability to access memories has been mildly disturbed, though it feels to me like it's been disturbed a lot! It's called "chemobrain" and can effect a sizeable percentage of patients. Who knew?

    The American Cancer Society has a whole section on anal cancer:  http://www.cancer.org/cancer/analcancer/index And here's another resource for anal cancer information, the HPV and Anal Cancer Foundation http://www.analcancerfoundation.org/

    I hope you don't have to worry about any of these side effects I had or the even nastier ones others have had, but if you do, you aren't alone and as sick as you may feel, you can and will live through it. You have a great chance at recovery!

    Virtual kisses, chocolates, and orchids.

  • jcruz
    jcruz Member Posts: 379 Member

    Greetings

    Greetings, Missy3, so sorry to meet you here!

    But now that you are here, I understand what you say about being ill prepared. The radiation oncologist gave me a lot of literature to read from the NIH, etc, and even that bypassed or only light touched on some of the appalling side effects. I think that we should be assigned a "cancer mentor" or "cancer buddy" if only to tell us that what we are going through isn't unexpected. Short of that, this forum fills the role. I think the medical professions get kinda jaded because they deal with cancer treatment every day and it's the same-old same-old to them. They forget what a foreign territory it is to most of us.

    My oncologist won't talk about what's next if the chemo/radiation fails because "it's something that I may never have to think about".

    I wasn't working, either, but remained in absolute awe throughout of other cancer patients I met that were abole to drive themselves to appointments and then went off to work. The kind of cancer and treatment prescribed make the big difference.

    My radiation oncologist told me that pelvic and head/neck radiation are the most brutal areas to be treated. (One patient of his that I met had cancer of the tonsils - his burns, both inside and out, were horrifying. He could barely speak or swallow and had thick, tenacious mucous to try to cough up constantly. He lived on Boost for months. So, anal cancer patients aren't alone.) The doctor told me he'd gladly take a job flipping burgers if it meant that no one would need radiation treatment anymore.

    If you need to take time off from radiation, don't worry. Do what you need to do. It's the total amount of radiation received; it's not a race to the finish.

    eithaK is absolutely correct when she says that rest and nutrition are your priorities. There will times when you have to force yourself to get essential foods and fluids in. I read a big article on sleep science in Time Magazine a few years back. Your body cells heal themselves only during sleep. So, lie down already!

    I was hospitalized three times for neutropenic fevers, receiving multiple IV antibiotics. My WBC was down to 0.2 at one time in spite of receiving Neupogen daily (my bone marrow took a vacation). The skin on my bumper sloughed off in bloody sheets. I expelled many, many industrial drums worth of neon yellow watery enteritis stools over several months. For a brief time, I was on morphine before I could cut back down to Fentanyl. During my last hospitalization, I received two units of whole blood and 2 of platelets. I felt like an engorged tick!

    No, I was very unprepared and felt utterly alone. But the thing of it is that there are people who have it even worse. And there are those who have a much easier time, too. I hope you are one of those.

    Recovery is no picnic, either. It's taking much longer to recover than I naievely thought it would. I am getting cancer rehabilitation through the hospital's outpatient PT department. While my body is getting stronger, it's my "working memory" that worries me. The speech therapist says that my memory seems to be intact, but my ability to access memories has been mildly disturbed, though it feels to me like it's been disturbed a lot! It's called "chemobrain" and can effect a sizeable percentage of patients. Who knew?

    The American Cancer Society has a whole section on anal cancer:  http://www.cancer.org/cancer/analcancer/index And here's another resource for anal cancer information, the HPV and Anal Cancer Foundation http://www.analcancerfoundation.org/

    I hope you don't have to worry about any of these side effects I had or the even nastier ones others have had, but if you do, you aren't alone and as sick as you may feel, you can and will live through it. You have a great chance at recovery!

    Virtual kisses, chocolates, and orchids.

    so much good advice

    Ouch_Ouch_Ouch

    Just wanted to say thank you for sharing your story and your advice to Missy3.  Sounds like you got all of the worst case scenarios during treatment.  I am sorry you went through such awful times.  My med onc. said the same thing as your rad onc. about cancer treatment for the head/neck and pelvis areas. 

    The very neutral language used in the literature about anal cancer is just that - neutral.  They don't say brutal that I can recall.  I browsed this board a little before my treatment began and I was so scared reading a few posts that I just had to stop until after I was done.  I think I was better off sticking my head in the sand.  That's not for everyone though.

    My med. onc. asked me if I would be a resource for another anal cancer patient if one expressed interest in talking with someone who had been through it.  Of course I said yes.  I haven't yet been contacted but I will do my best if asked.  I think that's what we do here and I would want to do that on a one-to-one basis.

    Janet

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    jcruz said:

    so much good advice

    Ouch_Ouch_Ouch

    Just wanted to say thank you for sharing your story and your advice to Missy3.  Sounds like you got all of the worst case scenarios during treatment.  I am sorry you went through such awful times.  My med onc. said the same thing as your rad onc. about cancer treatment for the head/neck and pelvis areas. 

    The very neutral language used in the literature about anal cancer is just that - neutral.  They don't say brutal that I can recall.  I browsed this board a little before my treatment began and I was so scared reading a few posts that I just had to stop until after I was done.  I think I was better off sticking my head in the sand.  That's not for everyone though.

    My med. onc. asked me if I would be a resource for another anal cancer patient if one expressed interest in talking with someone who had been through it.  Of course I said yes.  I haven't yet been contacted but I will do my best if asked.  I think that's what we do here and I would want to do that on a one-to-one basis.

    Janet

    Thanks

    Thanks for the kind comment, jcruz.

    However, I know of a woman who had anal cancer and was prescribed the standard protocol - Mitomycin, 5-FU, radiation. But after her first dose of Mitomycin, she ended up in an ICU on life supprt for 2 weeks and has no memory of the events. She was put on another chemo med (can't remember what), and has survived. Another person from this very forum said that following treatment, she had to go to an inpatient rehab center for 2 or 3 months. She was weak and put on TPN nutrition given via her medi-port. She seems to be much better now. So, things can get worse.

    But I have to say that although I felt very sick when I had rheumatic fever, it doesn't hold a candle to cancer treatment side effects. Yuck!

    CORRECTION: . . .she had to go to an inpatient rehab center for 4 WEEKS.

  • mp327
    mp327 Member Posts: 4,440 Member

    Thanks

    Thanks for the kind comment, jcruz.

    However, I know of a woman who had anal cancer and was prescribed the standard protocol - Mitomycin, 5-FU, radiation. But after her first dose of Mitomycin, she ended up in an ICU on life supprt for 2 weeks and has no memory of the events. She was put on another chemo med (can't remember what), and has survived. Another person from this very forum said that following treatment, she had to go to an inpatient rehab center for 2 or 3 months. She was weak and put on TPN nutrition given via her medi-port. She seems to be much better now. So, things can get worse.

    But I have to say that although I felt very sick when I had rheumatic fever, it doesn't hold a candle to cancer treatment side effects. Yuck!

    CORRECTION: . . .she had to go to an inpatient rehab center for 4 WEEKS.

    Ouch

    Thanks for posting all of this information and relaying your experience.  It is very true that no one's journey is the same as someone else's, although many commonalities will occur.  I had so very little information on what to expect before I began treatment.  Being a person who likes to know what to expect, that was very hard for me, especially when I began to feel the side effects and realize I was in for a bumpy ride.  However, I often wonder if I had known how really bad it would have been if I had gone through with it.  I suppose I would have.  However, after being on this site and others for almost 6 years, I realize that my experience was not as bad as some others' and I am grateful for that.  My recovery has been good, with just a few setbacks here and there.  Even after this length of time, I am still being reminded in various ways that my body isn't what it once was.

    I wish you all the very best and thanks again for the posts.

  • Missy3
    Missy3 Member Posts: 14 Member
    mp327 said:

    Ouch

    Thanks for posting all of this information and relaying your experience.  It is very true that no one's journey is the same as someone else's, although many commonalities will occur.  I had so very little information on what to expect before I began treatment.  Being a person who likes to know what to expect, that was very hard for me, especially when I began to feel the side effects and realize I was in for a bumpy ride.  However, I often wonder if I had known how really bad it would have been if I had gone through with it.  I suppose I would have.  However, after being on this site and others for almost 6 years, I realize that my experience was not as bad as some others' and I am grateful for that.  My recovery has been good, with just a few setbacks here and there.  Even after this length of time, I am still being reminded in various ways that my body isn't what it once was.

    I wish you all the very best and thanks again for the posts.

    To All

    Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

    I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

    I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

    I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

    Thank you guys again for having such big caring hearts xoxo

     

  • 0626june
    0626june Member Posts: 73
    Dear Missy,

    Just know that you will get through this. Truly, you may have already had the worst of it. My Dr. told me that the side effects were cumulative, but my worst day was the 2nd day of treaqtment. People said to me, "One day at a time" but it really came down to, "One hour at a time and even One moment at a time"  Find some enjoyment every day...Hopefully you will be able to laugh at least a little each day. As I said to someone else, this protocol is brutal, but it works. I was stage 3b as well. Lymph nodes were involved.  I had the mitomiacin, radiation and 5fu (I think we all did) Halfway through, my bum was badly, deeply burned and someone told me that each day after radiation (not before because it interferes with the beams) he applied aloe vera gel and his burns never opened up.  I started doing that to the places that hadn't become sores yet and it worked. Nobody at the Drs office mentioned this to me.  On the last day of treatment, the Dr. asked how I felt.  "Defeated, wiped out, like death warmed over'" Ireplied "Ok, well that's how the cancer cells feel" he responded. I felt too cruddy to appreciate this at the time.  I was fortunate in that I didn't have to work during treatment, I admire you for even attempting to do so. The people on this forum are amazing. Hang in there.  You can do this!   June

  • mp327
    mp327 Member Posts: 4,440 Member
    Missy3 said:

    To All

    Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

    I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

    I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

    I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

    Thank you guys again for having such big caring hearts xoxo

     

    Missy

    Do not worry about thanking us all, right now your focus must be on getting through treatment.  You will get the chance to pay it forward someday when a newbie comes along who needs your good advice based on your experience. 

    Your side effects sound very similar to mine, except I had extreme diarrhea.  I did not take enough pain medication to give me any relief from my pain because I was driving myself to treatment most days and couldn't be loopy from the drugs.  That was one of my biggest mistakes.  I would say take as much of the pain medication as you can safely do.  Do not worry about work or anything else, just get on top of the pain and stay on top of it. 

    My appetite went completely away too.  Towards the end, I was down to eating Ramen noodles every day and not much else.  It seemed that the saltiness of them tasted okay to me--not good, but tolerable.  I could not look at another bottle of Boost by the end of treatment!  Eat what you can and keep up with the fluids--that's very important, as you know.  Take care and know that we are all in your corner cheering you on.  I know you can do this!

    Martha

  • mxperry220
    mxperry220 Member Posts: 493 Member
    Missy3 said:

    To All

    Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

    I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

    I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

    I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

    Thank you guys again for having such big caring hearts xoxo

     

    Ensure

    I found the Ensure brand drink supplement helped me as I did not have much of an appetite.  The Ensure had vitamins and minerals supplememnts.  I did not have the severe burns that a lot of folks have.  I had 30 rounds of radiation and 2 rounds of chemo.  I also ate toasted cheese sandwiches on white bread.  I did have diahrrea theentire time during and post treatment.  I took and still take immodium daily.  I am 5 years 8 months post treatment/

    Mike

  • jcruz
    jcruz Member Posts: 379 Member
    Missy3 said:

    To All

    Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

    I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

    I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

    I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

    Thank you guys again for having such big caring hearts xoxo

     

    sending you healing thoughts

    I will be thinking of you as you start your next chemo round and on into the final stretch of radiation treatments.

    I remember both rounds of chemo completely knocking me flat and I was way more nauseous with the second round than the first.  I really hope you will do better than that.  My fatigue just kept building toward the end.  I gave in and watched a lot of movies and tv shows, lay in bed listening to music or just sleeping.

    If anything tastes good and doesn't aggravate your digestion just keep eating it.  I knew to stay well away from insoluble fiber but that was about it for paying attention to my dietician's advice.  My go-to source of protein was a shake I made with whey protein, milk, full-fat greek yogurt and frozen fruit.  Most of the time it was mango.  Unfortunately I detest bananas so the frozen mango was a good subsitute.  I was lucky not to lose my appetite completely but I only ate what appealed to me - baked potatoes, pasta, mango sorbet, toast with peanut butter, I can't remember what else but not much variety.  I tried both Ensure and Boost and found them to be so sweet and nauseating I couldn't drink them.

    By the end of treatment I was taking 40 mg of oxycontin and had 5 mg of oxycodone to take for breakthrough pain.  I still wasn't painfree but I could live with it.  I advocate for taking the meds as much as you need to and then deal will weaning off of them later.  I took them for 3 months after treatment because of ongoing pain and then weaned of over about 6 weeks.

    Janet

  • qv62
    qv62 Member Posts: 434 Member
    Missy3 said:

    To All

    Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

    I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

    I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

    I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

    Thank you guys again for having such big caring hearts xoxo

     

    Missy3

    We can all relate to the fatigue of not being able to type a sentence but so glad you did because this board is such a wealth of information and comfort (I couldn't have done without it although there were days I couldn't even log on to check in) As for your weight loss and problem eating my chemo-oncologist drink of choice was called Scandi shakes which were available in choc, van, and strawberry in the drugstore. She insisted I get them, I had plenty of weight to spare and could still stand to lose another 20 lbs but she said they were much needed when losing weight too quickly. The one thing I could get down even on my worst days was frozen yogurt and smoothies made with bananas, strawberries, milk and yogurt. As for the burns, I am so sorry you are at that stage, I took many baths and got the radiation gel packs from the radiologist which I kept in the fridge, they were quite soothing, also had a friend that extracted fresh aloe and that was helpful too. Then of course there is the silverdine cream which also helped I would put it on right after radiation, shower it off before bed and shower again before treatment to make sure there was not a trace onAt first the radiologist told me to only use it on weekends but as my burns worsened she allowed me to use it every day. My burns were the worst after treatment and I was hospitalized for wound control but hopefully you will find some relief that works for you. Rooting for you stay strong, rest and LOTS of water.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Food - the friendly enemy + other stuff

    Dearest Missy:

    * I had a side effect where many odors left me incapcitatingly nauseated and gagging uncontrolably. The hospital was bad. It had new Pergo-like floors and cabinets. All that plastic laminate odor was too much. The cleaning solutions were awful. The smell of my own enteritis stools got to me. I had to be discharged before they wanted me to. If you have access to an aroma therapy program, utilize it. If not, then peppermint oil (not flavoring from the supermarket, but the essential oil from a health food shop) will mask any noxious odors. Keep a small dish of cotton balls soaked with it near you. Keep a little jar of soaked cotton balls on you for trips to the infusion center or radiation. I reacted strongly to saline flushes through my port (smelled to me like model airplane glue). Regular IV normal saline didn't bother me, so I think the flushes must have a preservative that got to me.

    * I had a metallic taste in my mouth for a long time that effected the flavors of food in unpredictable ways. I now have the taste of a bitter blade of grass; iit's minor, but not pleasant.

    * Try NOT to loose weight as it will not be from fat loss, but from muscle mass loss. That will make you even weaker.

    * - It's difficult to drink too much fluid while you are being treated, but it's very easy not to drink enough. Your kidneys need the help filtering the chemo (it sticks around in your body a lot longer than you might think) and to prevent dehydration from vomiting and/or diarrhea. If you cannot keep up your fluids, go to your infusion center for hydration through your port. I went about 4 times, but there were some patients there who had to go in daily. Ask the MD/infusion staff/Dietician how much to drink every day and do your best.

       - I found that Boost's "rich chocolate" flavor was good to me and remains so. Experiement with different brands and flavors because you will need supplementation even during the recovery phase.

       - I still have some left over baby food jars! They are simply cooked foods that are easily digested.

       - Avoid fiber: eat white toast, not wheat. Cut way back on cooked fruits and veggies and by no means eat raw fruits or veggies. Your GI tract is too inflammed to tolerate them and may remain so.

       - Do NOT drink carbonated beverages until they are completely flat. Carbonation is another source of irritation. I didn't find out until my abdomen was very sore and distended. Beverages with citric juices may be way too irritating, too.

       - Try chicken noodle soup. If the regular stuff is too salty, Campbells has a lower sodium variety.

       - Increase calories wherever you can. Instead of using margarine on your white bread toast, use butter. Add a dollop of cream to your soup or scrambled eggs. Like that.

       - Many people eat Greek yougurt (the real stuff contains more protein than regular yogurt). Real Greek yogurt will not have any thickeners. If the label says there's carageenen or any other thickeners, then it's not real Greek yogurt and likely will not have that extra protein.

       - Ice cream wasn't bad for me. I also used it to make shakes with added protein powder.

       - Eggs are excellent. Prepare them simply - poached, hard boiled (makes a good snack, too), sauteed scrambled eggs cooked in butter (no veggies), cheese and saltines (if you can tolerate cheese).

       - Eat every 2 hours or so. They don't have to be actual meals, but can be snacks to get you to the next food time. Carry snacks with you everywhere. I am almost 3 months post treatment and if I go too long without eating, I get very shaky. Good old Boost comes in handy!

       - Puddings (if lactose intolerant, watch out for all the milk), Jello, cooked applesauce without skins, saltines and cheese, peanut butter, hard boiled egg, baked/boiled potato (high in potassium; don't eat the skin), pasta and butter with grated cheese (no high fiber brands), your Dietician can help you identify other foods.

       - Don't pile on the portions. I found that too much food on the plate was a real visual turn off. Go back for more when you finish.

    * Don't use Silvadene on your burns if you are allergic to sulfa drugs, like me. Don't use Aquaphor if you are sensitive to lanolin, like me. Albolene is similar, but without the lanolin (has mineral oil, petrolatum, parrafin, ceresin, and beta carotene only; it's recommened by many aetheticians and plastic surgeons for healing after facial procedures).

    * Regular undies with elastic waist bands and leg bands may become too irritating against burned skin. Some people wear boxer shorts, more expensive undies with woven waist and leg bands, or nothing at all when resting at home.

    * Pain management was mentioned above. Pain is extremely stressful; do not wait until your pain is severe. Stop it ASAP. Likewise, stay on top of nausea. Don't let it overwhelm you before taking your meds. If you don't have good pain or nausea control, call your MD and insist on adjustments.

    * When not eating, sleep, and sleep, then sleep.

  • Missy3
    Missy3 Member Posts: 14 Member

    Food - the friendly enemy + other stuff

    Dearest Missy:

    * I had a side effect where many odors left me incapcitatingly nauseated and gagging uncontrolably. The hospital was bad. It had new Pergo-like floors and cabinets. All that plastic laminate odor was too much. The cleaning solutions were awful. The smell of my own enteritis stools got to me. I had to be discharged before they wanted me to. If you have access to an aroma therapy program, utilize it. If not, then peppermint oil (not flavoring from the supermarket, but the essential oil from a health food shop) will mask any noxious odors. Keep a small dish of cotton balls soaked with it near you. Keep a little jar of soaked cotton balls on you for trips to the infusion center or radiation. I reacted strongly to saline flushes through my port (smelled to me like model airplane glue). Regular IV normal saline didn't bother me, so I think the flushes must have a preservative that got to me.

    * I had a metallic taste in my mouth for a long time that effected the flavors of food in unpredictable ways. I now have the taste of a bitter blade of grass; iit's minor, but not pleasant.

    * Try NOT to loose weight as it will not be from fat loss, but from muscle mass loss. That will make you even weaker.

    * - It's difficult to drink too much fluid while you are being treated, but it's very easy not to drink enough. Your kidneys need the help filtering the chemo (it sticks around in your body a lot longer than you might think) and to prevent dehydration from vomiting and/or diarrhea. If you cannot keep up your fluids, go to your infusion center for hydration through your port. I went about 4 times, but there were some patients there who had to go in daily. Ask the MD/infusion staff/Dietician how much to drink every day and do your best.

       - I found that Boost's "rich chocolate" flavor was good to me and remains so. Experiement with different brands and flavors because you will need supplementation even during the recovery phase.

       - I still have some left over baby food jars! They are simply cooked foods that are easily digested.

       - Avoid fiber: eat white toast, not wheat. Cut way back on cooked fruits and veggies and by no means eat raw fruits or veggies. Your GI tract is too inflammed to tolerate them and may remain so.

       - Do NOT drink carbonated beverages until they are completely flat. Carbonation is another source of irritation. I didn't find out until my abdomen was very sore and distended. Beverages with citric juices may be way too irritating, too.

       - Try chicken noodle soup. If the regular stuff is too salty, Campbells has a lower sodium variety.

       - Increase calories wherever you can. Instead of using margarine on your white bread toast, use butter. Add a dollop of cream to your soup or scrambled eggs. Like that.

       - Many people eat Greek yougurt (the real stuff contains more protein than regular yogurt). Real Greek yogurt will not have any thickeners. If the label says there's carageenen or any other thickeners, then it's not real Greek yogurt and likely will not have that extra protein.

       - Ice cream wasn't bad for me. I also used it to make shakes with added protein powder.

       - Eggs are excellent. Prepare them simply - poached, hard boiled (makes a good snack, too), sauteed scrambled eggs cooked in butter (no veggies), cheese and saltines (if you can tolerate cheese).

       - Eat every 2 hours or so. They don't have to be actual meals, but can be snacks to get you to the next food time. Carry snacks with you everywhere. I am almost 3 months post treatment and if I go too long without eating, I get very shaky. Good old Boost comes in handy!

       - Puddings (if lactose intolerant, watch out for all the milk), Jello, cooked applesauce without skins, saltines and cheese, peanut butter, hard boiled egg, baked/boiled potato (high in potassium; don't eat the skin), pasta and butter with grated cheese (no high fiber brands), your Dietician can help you identify other foods.

       - Don't pile on the portions. I found that too much food on the plate was a real visual turn off. Go back for more when you finish.

    * Don't use Silvadene on your burns if you are allergic to sulfa drugs, like me. Don't use Aquaphor if you are sensitive to lanolin, like me. Albolene is similar, but without the lanolin (has mineral oil, petrolatum, parrafin, ceresin, and beta carotene only; it's recommened by many aetheticians and plastic surgeons for healing after facial procedures).

    * Regular undies with elastic waist bands and leg bands may become too irritating against burned skin. Some people wear boxer shorts, more expensive undies with woven waist and leg bands, or nothing at all when resting at home.

    * Pain management was mentioned above. Pain is extremely stressful; do not wait until your pain is severe. Stop it ASAP. Likewise, stay on top of nausea. Don't let it overwhelm you before taking your meds. If you don't have good pain or nausea control, call your MD and insist on adjustments.

    * When not eating, sleep, and sleep, then sleep.

    So much wonderful information

    I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

     I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

    Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

    This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

     

    Since i I am not sleepy maybe this would be a good time to let you know more about me:)

     

    i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

    i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

    I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

    I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

    Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

    i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

    thanks for listening to my rambling.   Starting to get sleepy now!!!!   :)

    cant miss tomorrow it is tx # 21 yah!

    Missy xoxoxo

  • mp327
    mp327 Member Posts: 4,440 Member
    Missy3 said:

    So much wonderful information

    I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

     I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

    Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

    This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

     

    Since i I am not sleepy maybe this would be a good time to let you know more about me:)

     

    i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

    i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

    I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

    I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

    Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

    i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

    thanks for listening to my rambling.   Starting to get sleepy now!!!!   :)

    cant miss tomorrow it is tx # 21 yah!

    Missy xoxoxo

    Missy

    You are right--the doctors and nurses who have not been through this treatment are usually lacking when it comes to giving out the best information on how to deal with side effects.  You've gotten some very good information here that your healthcare team either doesn't know or doesn't have the time to discuss with you.  I was on no support sites when I went through treatment and how I wish now that I had been!  It would have saved me from a lot of pain.  I was so naive about everything.  Most of what I've learned since then has come from the good advice from others who have had this treatment.  I think the people on this site are wonderful too and we do look out for each other.

    You are over half-way through treatment now, so hang in there and keep the finish line in sight.  You can do this!

    Martha

  • judyv3
    judyv3 Member Posts: 143 Member
    Missy3 said:

    So much wonderful information

    I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

     I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

    Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

    This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

     

    Since i I am not sleepy maybe this would be a good time to let you know more about me:)

     

    i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

    i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

    I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

    I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

    Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

    i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

    thanks for listening to my rambling.   Starting to get sleepy now!!!!   :)

    cant miss tomorrow it is tx # 21 yah!

    Missy xoxoxo

    Missy

    This site is invaluable to us, no doubt.  I suffered from insomnia as well.  I think down the line it will help you forget what you have been through.  I read book, after book, after book.  My Kindle was by my side and charged at all times.  It was in the bathroom, in the bed, everywhere.  It distracted me.

    Will be sending good vibes for the rest of the journey.

    Judy