Mom entering week 5 of treatment....worried.

Dmarie1075

First I would like to say that is board has been so helpful. I started reading and gathering information when my mom was diagnosed in August.  Mom is currently entering her 5th week of treatment for stage 2 anal cancer. She did well through her first three weeks. Week 4 has hit her very hard however.

Her skin is broken down and very sore. She has done very well at keeping up with the radiation burns with frequent soaks and creams. 

She started having severe, uncontrollable diarrhea and debilitating stomach cramps this past week. Her doctor ordered stool samples and blood work. Her blood work was good and negative for C Diff. They gave her fluids via her port Thursday and gave her the day off from radiation Friday.  She is suppose to start her second 5 FU AND Mitomycin  infusion tomorrow, although her physician stated they may delay until this Wednesday, depending on her physical status. She is to the point of not taking anything by mouth (besides limotil and Imodium with sips of water) and is extremely week. She started treatment weighing 90 lbs. so she has no room to lose weight. She will not get out of bed. This has been the case for 3 days. As much as my dad and I have been encouraging her and stressing the importance of fluids and nutrition, she is refusing. With that, my dad made the decision to get Mom to the hospital. She does have a fever, and we are awaiting lab results. 

Anyone have a similar experience while enduring treatment? It goes without saying that I am very concerned and worried about my mom. She has always been a strong-willed lady and went into this treatment with a fighting attitude. 

Any words of advise and encouragement are appreciated. Thank you. 

 

eihtak

Dmarie1075...

Oh my, I am so sorry to hear that this has hit your mom so hard. Please let us know what you learn from thse lab results and I will pray for whatever it is to be easily treated. 

We all have different stories, yet so many similar aspects with this treatment. A few weeks into treatment I had developed some complications with my ostomy. The radiation had caused my colon to prolapse (out of my body) and into the ostomy bag due to internal swelling. While an awful situation at the time, it corrected itself shortly after completeing radiation. I know this is far different from your mom, but during this time I was not able to eat or if I did it did not stay down and I was wasting away. I was admitted to the hospital then transfered temporarily to a long term care facility where I received TPN (a nutritional supplement via my port)...without that specialized nutrition, I'm not so sure I'd have made it.

I know there have been others that have received TPN for other reasons and not sure if it is something your moms doctor would consider, but its worth mentioning that you have heard of this as you have nothing to lose by asking and just may get her over this hump. 

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   Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes.

   
   

   Hang in there, and know we are thinking of you all.....

   
   

   katheryn

   
   

    

   
   

    

   
   

   
   

   
   
   
   

mp327

Dmarie1075

Welcome to this board, however, I am sorry to hear of your mom's situation.  katheryn recommendation to ask her doctor(s) about TPN was going to be my suggestion too.  Quite a few people going through treatment for anal cancer hit the wall, so to speak, with their appetite and eating completely nil.  I had a very difficult time getting any food down towards the end of my treatment.  I, too, only weigh in the 90's, so it was a dire situation.  My medical oncologist told me I HAD to eat or face hospitalization and TPN.  Fortunately for me, I was able to get enough nutrition to stay out of the hospital, but it was a struggle forcing myself to eat and drink nutrition drinks, such as Boost.  If your mom has just refused any and all forms of nutrition, definitely ask her doctors about TPN and don't delay.  Your mom's treatment will be successful in ridding her of her cancer, so she needs to hang in there and get stronger.  katheryn's story demonstrates how sometimes people can almost succumb, not to the treatment, but to the lack of nutrition during treatment.  Please contact your mom's doctor(s) today.  I wish her all the very best.

Dmarie1075

Thank you both for sharing

Thank you both for sharing your experiences and suggestions. I'm sorry you both have had to endure this treatment.

Starting in the ER last night, mom became disoriented. She remains that way. Her fever spiked to 102.5 and her last temperature this morning was 97.8. Blood cultures have been ordered as well as a CT scan of the pelvis and abdomen. I spoke to her colorectal surgeon today. She said they will turn to either TPN or feeding tube if she will not take anything orally. Along with confusion, she is also lethargic so I doubt they will be able to get her to take anything by mouth. 

CBC is normal besides WBCs which are 2.2. Her potassium was low last night, which they corrected. 

Stool cultures negative for Salmonella and E. Coli. 

Thank you again for your responses and thoughts. We pray mom can get through this hump soon and continue with treatment. 

 

mp327

Dmarie1075

I appreciate your update.  I'm sorry your mom is going through such a rough time.  I hope whatever decision is made, it will get her the needed nutrition so that her treatment can resume.  Please keep us posted as you can and know that you and your mom are in my thoughts and prayers.

Mollymaude

DMarie

I'm so glad your mom is in the hospital getting the care she needs. She will get fluids, antibiotics and anti-diarrhea meds as well as pain meds. I suspect her counts got low and she got sepsis like I did at the end of treatment. I have never been that sick in my life. I could literally feel myself slipping away. I too had uncontrollable diarrhea and ended up on tincture of opium to try and control it. I literally would get myself cleaned up from a bout of diarrhea , get back in bed, and 15 minutes later I would be back in the bathroom. I was too weak to bathe for days. I also hallucinated- I heard a flock of geese and old rock and roll songs. They took me to my radiation treatments in a wheelchair. (I had been a healthy 50 yo woman).I pray your mom makes a good recovery as I did. I never had the low weight issue but the TPN sounds like a good idea if she won't eat.

Dmarie1075

Mollymaud,

Mollymaude,

 

I'm sorry to hear you had such a difficult time as well. As of this morning, the diarrhea remains out of control, coupled with the inability to clean herself. Her pain is not managable at this time. She is out of it and still unable to take anything by mouth. We are awaiting blood cultures. 

Currently I am waiting to speak to nurse and hopefully physician to see what plan is for nutrition. 

Did you have a delay in your treatment due to hospitalization? I'm scared and question her ability to continue treatment at this point. 

shamayim

Dmarie

Im sorry to hear about your Mom. I found Mugard helped me alot and I never got a mouth sore the second round of chemo.  The first round I could barely eat or get water down.  I was always being hydrated by IV.  I avoided fiber like the plague and found things like mashed potatoes easier to eat and not give me problems.  Everybody is different and I'll keep you in my prayers.  I am 2 years anal cancer free and grateful for that fact.  You are in the worst of the weeks, and all I can say is to just keep going and try to make it through.  It was at this point I had neutrpenic fever and ended up in the hospital.  I did alot of resting and found when the nurses applied liquid lidocane to my burns I found relief.  It was at this point I needed oxycodone but was afraid of constipation.  My biggest juggling act was to eat and not be constipated or have diarrhea.  I had high fevers and low BP, was wondering if I was going to make it, but I did. Soothing music and prayers in Hebrew helped me transcend the hell of my physical state and allow for a spiritual healing as well....  I did have a delay or "break" in my treatment.  I didnt realize most people have a "break".  I was burned so badly I requested to be wheeled in a bed to my appointments. I could walk with help but sitting was out of the question..... I never showered and didnt worry about it all I would ask is if my burns were infected and they were not.  I was also warned by my radiologist about "burn specialists", because radiation burns are a totallly different thing.. I followed my radiologists instructions to a T.  Also considered quitting and he was concerned, said I was through the worst of it, why would I quit.... so know you are getting close to turning a corner.  Hang in there!

Mollymaude

DMarie

I had a few breaks during treatment- one day off for Christmas and the next week a day off for New Years. Those were nice breaks because I had no choice in them because clinic was closed. There was another day off when the radiation machine broke down. So my treatment went three days into the seventh week. I think your mom sounds sicker than I was because I was always able to eat and drink. I especially remember being SO thirsty and my water pitcher always needing to be filled- I was losing so much water thru the diarrhea. I think I might lean towards a break for your mom. Especially since you don't have blood cultures back- she may need all her strength to fight infection right now. You know your mom better than anyone so I would follow my instincts at this point. Please keep us updated. 

Jane s

DMarie

I'm so sorry about what your mom is going through.  I'm saying prayers for her.  I'm glad your dad made the decision to take her to the hospital where she can get fluids and nutrition.  I started treatment at 100 pounds and it was an ongoing concern.  90 pounds is so thin.  Was she always thin?  Or did she lose weight due to the cancer?

hugs to you!

Jane

Dmarie1075

Mollymaude said:

DMarie

I'm so glad your mom is in the hospital getting the care she needs. She will get fluids, antibiotics and anti-diarrhea meds as well as pain meds. I suspect her counts got low and she got sepsis like I did at the end of treatment. I have never been that sick in my life. I could literally feel myself slipping away. I too had uncontrollable diarrhea and ended up on tincture of opium to try and control it. I literally would get myself cleaned up from a bout of diarrhea , get back in bed, and 15 minutes later I would be back in the bathroom. I was too weak to bathe for days. I also hallucinated- I heard a flock of geese and old rock and roll songs. They took me to my radiation treatments in a wheelchair. (I had been a healthy 50 yo woman).I pray your mom makes a good recovery as I did. I never had the low weight issue but the TPN sounds like a good idea if she won't eat.

Mollymaude,

Mollymaude,

 

May i ask, at the point where you felt you had little fight, what kept you going? My mom is finding it difficult to continue to fight. She is exhausted and in much pain. She remains in the hospital. They have started her on TPN. I am hoping that will boost her up. 

eihtak

Dmarie1075...

Hi, 

Just want to say I am thinking of you and your mom. I'm so glad she is getting the TPN and is in the hospital (well not so much for the need but glad that she is getting that level of help since there is) I'll pray that within a few days you see a boost in her energy and strength. I was at my breaking point as well and along with the TPN was on a regular schedule of pain meds that at least took the edge off. It also helped to always have a squirt bottle at hand when peeing as the urine would burn that sore radiated skin so I'd be sure to squirt with warm water at the same time to dilute it. If she is on pain meds, a daily stool softener may help as well to prevent constipation. 

I noticed that someone else mentioned soothing music and prayers....one can never have enough! My daughter brought me a sound machine so I could listen to ocean waves, or rain, and it became so relaxing that I still use it to fall asleep now (almost 7 years later)

Continue to hang in there and know that we are all with you in this, it may be virtual, but you and your mom are not alone!

katheryn

Dmarie1075

shamayim said:

Dmarie

Im sorry to hear about your Mom. I found Mugard helped me alot and I never got a mouth sore the second round of chemo.  The first round I could barely eat or get water down.  I was always being hydrated by IV.  I avoided fiber like the plague and found things like mashed potatoes easier to eat and not give me problems.  Everybody is different and I'll keep you in my prayers.  I am 2 years anal cancer free and grateful for that fact.  You are in the worst of the weeks, and all I can say is to just keep going and try to make it through.  It was at this point I had neutrpenic fever and ended up in the hospital.  I did alot of resting and found when the nurses applied liquid lidocane to my burns I found relief.  It was at this point I needed oxycodone but was afraid of constipation.  My biggest juggling act was to eat and not be constipated or have diarrhea.  I had high fevers and low BP, was wondering if I was going to make it, but I did. Soothing music and prayers in Hebrew helped me transcend the hell of my physical state and allow for a spiritual healing as well....  I did have a delay or "break" in my treatment.  I didnt realize most people have a "break".  I was burned so badly I requested to be wheeled in a bed to my appointments. I could walk with help but sitting was out of the question..... I never showered and didnt worry about it all I would ask is if my burns were infected and they were not.  I was also warned by my radiologist about "burn specialists", because radiation burns are a totallly different thing.. I followed my radiologists instructions to a T.  Also considered quitting and he was concerned, said I was through the worst of it, why would I quit.... so know you are getting close to turning a corner.  Hang in there!

Shamayim,

Shamayim,

Thank you for sharing your experience. The rough rode you traveled through this treatment, I feel my mom could have written your words herself. 

My mom is at her breaking point. She is exhausted and in much discomfort. They did start her on TPN today. I am hoping the nutrients will help boost her up. She is also strong her in faith. Thank you for the suggestion of prayer.  I so appreciate you sharing your story. 

 

shamayim

Dmarie1075 said:

Shamayim,

Shamayim,

Thank you for sharing your experience. The rough rode you traveled through this treatment, I feel my mom could have written your words herself. 

My mom is at her breaking point. She is exhausted and in much discomfort. They did start her on TPN today. I am hoping the nutrients will help boost her up. She is also strong her in faith. Thank you for the suggestion of prayer.  I so appreciate you sharing your story. 

 

Your Welcome Dmarie

Again I'm so sorry for what your Mom is experiencing and hope the TPN helps.  I had a plastic sheet under me because I regularly had accidents.  I couldnt manage to get out of bed, manage the IV and make it to the bathroom while I was in the hospital (for 7 days) I used a spray bottle with saline water to clean myself because I could not touch that area with much of anything.  I would spray it furiously while I was urinating because that was like throwing acid on top of a burn.  The PH of saline is so much more gentle on your skin than water. (my radiologist advised me to do this)  There is no way to sugar coat the last couple of weeks.  They are hard.  I was in bed pretty much non stop.  I was so sick that I had a 2 week break from treatment.  One week was while I was in the hospital, the other was at home and when I was debating on whether I could go on.   Your Mom is very lucky to have such a loving daughter and husband to care for her.  I did this mostly on my own, but it was during these weeks that friends flew in from out of town to help me, and they helped to save my life.  When you get to the point where you can't go on, just ask for heavenly help and leave it up to him and again I did it with music, as I was beyond words....  This was my truth, and after a night that was the worst, my fever of 104 started to break.  They never did find out what the cause was and I was told 50% of the time they never do.  

I cant stress enough to just keep going and at whatever pace you can handle.  These will be some of the longest weeks of your life, but eventually they will be over.  I looked at it like I had one chance to get it right and so I gave it everything I had, and kept slugging and fighting my way through it.  I worried about the 2 weeks and the statistics that showed that maybe I had lost some of the effectiveness of treatment but you also have to survive the treatment.  It is a very highwire balancing act of life and death.  All you can do is the best you can, and dont be afraid to ask if there is anything else that can be done to help.  

I wish my health problems were over but at least cancer is....(I think)   A year ago I had a massive heart attack I barely survived and was told I'd need a heart transplant.  Well, I told my Doctor that if there was a chance of recovery- it was going to be me, and I did.  So I cant stress enough to not give up no matter how bad, how hard, how hopeless, just keep trying to move forward...  My tough experiences with cancer is what laid the foundation for my recovery from my heart attack which made my cancer look easy, if you can imagine that.... !  I was in ICU being kept alive by an aorta heart pump machine and it was at that point I knew I was in very serious trouble.  The power of prayer cannot be understated.....

I know my post is long, but if it helps you, or someone else to know you are not alone in time of crisis- then that is a good thing.

 

Dmarie1075

Jane s said:

DMarie

I'm so sorry about what your mom is going through.  I'm saying prayers for her.  I'm glad your dad made the decision to take her to the hospital where she can get fluids and nutrition.  I started treatment at 100 pounds and it was an ongoing concern.  90 pounds is so thin.  Was she always thin?  Or did she lose weight due to the cancer?

hugs to you!

Jane

Jane,

Jane,

my mom has been tiny for a couple years. The last several months she has continued to drop weight. She has never had a big appetite and has been eating like a bird for some time. It's always been a big concern of her loved ones. She was stage II when diagnosed. 

Dmarie1075

Update on Mom...

Update on Mom...

She has been in the hospital a week. Stool, urine, and blood cultures negative. She is receiving TPN via her port. They were going to start feeding via nasal tube but now they suspect she has a bowel obstruction so nothing by mouth for now. 

She remains very tired but was requesting something to eat and drink. Finally....and now she cannot have anything by mouth

This marks day 9 since her last treatment. Her Radiation Oncologist was in yesterday and hopes that she gets built back up to start treatment soon. 

Again, thank you all for your responses. It means the world that you have reached out to share your stories and offer advise. You are all truly remarkable. 

Dmarie1075

shamayim said:

Your Welcome Dmarie

Again I'm so sorry for what your Mom is experiencing and hope the TPN helps.  I had a plastic sheet under me because I regularly had accidents.  I couldnt manage to get out of bed, manage the IV and make it to the bathroom while I was in the hospital (for 7 days) I used a spray bottle with saline water to clean myself because I could not touch that area with much of anything.  I would spray it furiously while I was urinating because that was like throwing acid on top of a burn.  The PH of saline is so much more gentle on your skin than water. (my radiologist advised me to do this)  There is no way to sugar coat the last couple of weeks.  They are hard.  I was in bed pretty much non stop.  I was so sick that I had a 2 week break from treatment.  One week was while I was in the hospital, the other was at home and when I was debating on whether I could go on.   Your Mom is very lucky to have such a loving daughter and husband to care for her.  I did this mostly on my own, but it was during these weeks that friends flew in from out of town to help me, and they helped to save my life.  When you get to the point where you can't go on, just ask for heavenly help and leave it up to him and again I did it with music, as I was beyond words....  This was my truth, and after a night that was the worst, my fever of 104 started to break.  They never did find out what the cause was and I was told 50% of the time they never do.  

I cant stress enough to just keep going and at whatever pace you can handle.  These will be some of the longest weeks of your life, but eventually they will be over.  I looked at it like I had one chance to get it right and so I gave it everything I had, and kept slugging and fighting my way through it.  I worried about the 2 weeks and the statistics that showed that maybe I had lost some of the effectiveness of treatment but you also have to survive the treatment.  It is a very highwire balancing act of life and death.  All you can do is the best you can, and dont be afraid to ask if there is anything else that can be done to help.  

I wish my health problems were over but at least cancer is....(I think)   A year ago I had a massive heart attack I barely survived and was told I'd need a heart transplant.  Well, I told my Doctor that if there was a chance of recovery- it was going to be me, and I did.  So I cant stress enough to not give up no matter how bad, how hard, how hopeless, just keep trying to move forward...  My tough experiences with cancer is what laid the foundation for my recovery from my heart attack which made my cancer look easy, if you can imagine that.... !  I was in ICU being kept alive by an aorta heart pump machine and it was at that point I knew I was in very serious trouble.  The power of prayer cannot be understated.....

I know my post is long, but if it helps you, or someone else to know you are not alone in time of crisis- then that is a good thing.

 

Shamayim,

Shamayim,

You are remarkable! Thank you again for sharing. I read your words to my mom in all hopes of offering her encouragement. 

Mollymaude

DMarie

Thanks for posting the update on your mom. How ironic that she finally asked to eat and now she can't! But overall she sounds like she is doing better. The break in treatment couldn't be helped, and I would try not to worry about it. I hope she feels well enough to finish treatment soon and get that behind her! 

mp327

Dmarie1075 said:

Update on Mom...

Update on Mom...

She has been in the hospital a week. Stool, urine, and blood cultures negative. She is receiving TPN via her port. They were going to start feeding via nasal tube but now they suspect she has a bowel obstruction so nothing by mouth for now. 

She remains very tired but was requesting something to eat and drink. Finally....and now she cannot have anything by mouth

This marks day 9 since her last treatment. Her Radiation Oncologist was in yesterday and hopes that she gets built back up to start treatment soon. 

Again, thank you all for your responses. It means the world that you have reached out to share your stories and offer advise. You are all truly remarkable. 

Dmarie1075

I'm glad your mom's tests show improvement, however, I'm so, so sorry to hear she now has a bowel obstruction.  I have been through that myself and it was miserable.  Is she in a great deal of pain because of it?  The pain I experienced was off the charts.  I have had several episodes of obstructions (none for the last couple of years or so, knock on wood), and I so remember the pain.  I was hospitalized one time for an episode and I was only given IV fluids, nothing to eat or drink, just like your mom.  I received medication in the ER to stop the contractions in my intestines and once that kicked in, I had no more pain.  But of course, the blockage was still there and took awhile to pass through.  I was on a soft/liquid diet for a couple of weeks after I was released from the hospital.  As you know, blockages are serious, so I hope that your mom has no complicatons and that this will resolve ASAP.  Thank you for keeping us updated and know that I am wishing your mom all the very best.

Dmarie1075

Mom is experiencing  severe

Mom is experiencing  severe abdominal pain. She has a high pain threshold so I know she is miserable. Her abdomen is distended and tight. The General Surgeon came in today and he is having a hard time believing it is an obstruction due to the continuous diarrhea she had been experiencing which is why she was admitted to the hospital. Also, no nausea /vomiting.  The diarrhea has mainly subsided, though she had a loose stool this am. They had her on Imodium and Lomotil, as well as pain meds. She hasn't been out of bed in 10 days. He is calling it an ileus and believe she just needs time and to pass gas. However, her internist is still saying bowel obstruction. In other words, we have no clear answer. It's pretty frustrating. 

She is on a full liquid diet now and she is happy for that. She mentioned to me today she doesn't think she can do this much longer and feels weaker and weaker. We are offering her tons of encouragement but I can't begin to know how she is feeling physically at the moment. 

mp327

Dmarie1075

I am so sorry to hear that your mom is still suffering such terrible pain.  I really feel for her, having gone through an obstruction, like I mentioned previously.  I hope the doctors can get a handle on this, including the correct diagnosis.  I am wondering if this is a partial obstruction, which might explain the earlier diarrhea.  I will say that I had diarrhea shortly before I began having the severe abdominal pain caused by the obstruction.  But I also had nausea and vomiting, due to the fact that the blockage prevented my stomach contents from moving into my intestinal tract.  Please keep us posted.  I am thinking all good thoughts for your mom!