Diet is so limited

Yesterday was Larry's first day keeping food down. Only eating very small amounts. Saw a posting of how important it is to take his meds at least 30 min before eating so it coats his inside. They did not have that instruction on the script. He was taking it just before he ate. What a difference. Those little details matter.

He had 1 c of oatmeal for breakfast. Lunch was a cup of chicken soup with 1/2 pc white bread. Dinner was 1/2 grilled cheese with no butter, only used pam, and 1/2 c cooked applesauce. 30 min after bedtime meds he had 1/2 soft cereal bar. Only seems to be able to tolerate non fiber foods. White bread, only white rice-all the stuff they tell cancer patients to stay away from. Anything with fat and he is unable to digest it. Larry  again is not drinking anything. I need to get it set up so that I can get him IV fluids at home. He went in for another blood test today. They are watching his levels closely.

Larry looks so much better today. It is amazing how well he does look after what he's endured. He is talking more. Talking has been very stressful on his GI tract. Made him very nauseous. His mental state also seems better.  If he can have a few days of keeping his food in him things should improve more.

We were told last week that the cancer had spread to the peritoneum. That is the membrane that surrounds the internal organs. At this time Larry is scheduled for another chemo treatment next Wednesday. Oncology nurse called yesterday and said the Dr wanted to talk to us first. We are wondering if he is going to tell us that it is too late for the chemo to help. Do oncology Dr's ever do that? Or do they push for you to keep going. Two chemo treatments spaced 5 weeks apart had no effect on the cancer. Can his body handle another treatment?
  

What is Gastroparesis

Larry vomited 5 hrs last night. He is so strong to be tolerating this. His body is enduring a lot right now. It is very difficult to watch him struggle with trying to eat but not able to keep it. 

I went online to my PC support group sites. A nurse from the John Hopkins site sent me a message asking why he was not checked for gastroparesis. There is a test called gastric emptying that can be done. I was told this vomiting is not typical for PC.

I had never heard of this. A call has been put in to his GI Dr and Internist.

Does anyone have any experience with this? I can read about it online but discussing this with someone who knows of it is more valuable. He is already taking Reglan medication. Thanks Everyone.

No Nutrition for 2 weeks

Larry is having a terrible time eating. Breakfast of oatmeal or eggs is ok. Lunch is harder. By dinner nothing is good. Starts out feeling ok when he awakens then it is a downward spiral to bedtime. 
Has lost the little he ate the last 2 days. The Reglan med was suppose to help with the nausea/vomiting. I am not sure who to even call anymore. 

The Visiting Professor Goes Home!

Larry is finally home! Our goal is to keep from having to return to the hospital. He was saying that it is never good when the nurses recognize him and say hello by name. He is now known as the visiting Professor on the 3rd and 4th floor.

Still is nauseous but kept his food down yesterday and today. His list of meds has lengthened. Larry feels that Reglan has helped him most. However it has terrible side effects and cannot be used for more than 3 months. http://www.fda.gov/downloads/Drugs/DrugSafety/UCM176362.pdf

We are both looking forward to a quiet week. No Dr's, no decision making, no chaos-just rest and walks.

Our Anniversary, August 25th

I awoke this morning with tears and sadness that Larry was not by my side. Thinking of 3 years ago when we spent most of our 25th with me in the hospital. Tears of knowing that this will probably be our last celebration. As my thoughts progressed, I found myself thanking God that we are be given this time together to celebrate our 28th Anniversary.

There will be no long weekend away that we had planned. There will be no champagne toast or eating of good foods. However, there will be Hugs, Kisses and Holding Hands. I will put a Do Not Disturb sign on the hospital door. We will light our Wedding Candle and repeat our Vows as we have done for 28 years in a row. We have been blessed to have had 28 years together as a married couple.

GI Clear

Larry's entire GI system is clear. All tests show no blockages of any kind.
Today he will again go back to trying to eat something liquid. Tomorrow more solid.
I have talked to the Oncologist, GI Dr, Hospitalist and a Palliative Care Dr. To each I said that they need to talk together and come up with a plan to go home with. Larry went into the ER with spasms and pain. They do not have a definitive reason for it. I am hoping they come up with a plan of meds so that he can eat without the spasms/pain taking hold. Palliative care has ordered a hospital bed for the house in hope that he can sleep better. He needs to sleep in an upright position.

Today he felt better and tolerated the GI Bariums he had to drink for the 5 hour test. Yeah, it seems his vomiting has ceased! Now if he can start eating without those spasms/pain occurring things will be much better. He was talking this morning about doing another chemo treatment next week. He very much wants the chemo to start working against the cancer.

Trying to keep moderate during all these ups and downs is very challenging. Every day brings something different. I am very very thankful for today. 

Bravery

I had received an email from a friend(Thanks Holly) about how brave she feels I am. Yet I do not feel that way. Not after seeing what Larry is enduring.

Larry is by far the bravest, kindest, loving person I have ever known. Even in the middle of all this, he continually is still thinking of the kids and I.

He found out at 5am this morning that he would be having the small bowel testing. They would be taking him to radiology around 8. He stayed awake so that he could wait until 7am to call me about it. He did not want to wake me up. With tears in my eyes I hugged him and thanked him. How do I get him to put himself first?

Day of Spasms/Pain

I reread my last post and realized that I was hoping it was the C. Diff causing Larry his problems. I guess that tells you where we are at this point.

He was able to keep down about 1/4 cup of cream of wheat and 1/4 cup of broth as of this posting. They may or may not set him up with this nutritional IV called TPN, toal parenteral nutrition. I was told it has numerous side effects. They will have to give him another vein catheter to use since he still needs his port open.

They may or may not do a lower bowel test tomorrow. His Oncologist feels it is a waste of money. The GI Dr says that the cat scan does not always show everything(the Oncologist did agree)  Larry seems to want the test feeling he has a bowel obstruction. However, he is still going everyday so there probably is no obstruction .

Since eating even a small amount he has been in a lot of pain with those horrible spasms. They are worse now, vibrating more of his body. The morphine is a low dose and does help much. Nothing he has been given has taken the spasms or pain away.

He had a very difficult time even talking today. Seemed to make the spasms worse and brought back those hiccups. Had the hiccups for 4 hrs straight.

The only time he seems to look good and feel better is after he receives a steroid injection.
Things keep changing, this is what today brought.

Cancer or C. Diff Leftovers?

Larry's endoscopy showed some inflammation in his esophagus but no reason as to why he cannot keep food or drink down. After the procedure and when I left the hospital very late last night he was miserable. His stomach spasms are back and he is very anxious. It has now been 8 days since he had any food or drink. We are very worried that the pancreatic cancer is causing his problems. Looks like I will again have to ask about additional testing without someone deciding that it should be done. We have not had any Dr. explain what is next. Tomorrow I am contacting each Dr personally. I am also going to set up an appt. with someone in hospital administration about the lack of coordination, communication, poor decision making, poor response and why we are still in the dark after the 5th day of hospitalization.

Could his colon be messed up from the C. Diff? I was not able to find any information on spasm or vomiting with C. Diff. Larry had one negative stool culture C. Diff test. When I asked about false negatives, the answer was very vague. Again per the web, not the Dr's, I find that 3 negative stool tests is the best proof that it is under control. False negatives occur when specimens are not promptly tested or kept refrigerated until testing can be done.Clostridium difficile toxin is very unstable. The toxin degrades at room temperature and may be undetectable within 2 hours after collection of a stool specimen. Molecular tests: FDA-approved PCR assays, which test for the gene encoding toxin B, are highly sensitive and specific for the presence of a toxin-producing Clostridium difficile organism. http://www.cdc.gov/hai/organisms/cdiff/cdiff_faqs_hcp.html

Endoscopy Tomorrow

Larry is scheduled for an endoscopy tomorrow afternoon. Finally, a GI Dr came to visit him. Only took them 3 days to finally contact someone. He visited Larry today and Yep-another opinion. He does not think it is the liver tumor causing his pain/spasms. He feels the type of problems with not being able to keep down food or water is more likely coming from the stomach. Hopefully tomorrow we will know more after the procedure. He was switched back to the morphine because he didn't get any relief from the dilaudid.

Tomorrow the oncology Dr will also be in. I don't know what he is going to say at this point. He may convince Larry to keep at the chemo-I don't know. I am not giving an opinion about this one, Larry needs to make the decision himself. None of this is easy.

I woke up this morning feeling like a cold is coming on-the LAST thing I need right now. Took all my supplements and feeling better now, hoping I caught it in time.
I also went to see my palliative care Dr. My Post Mast Pain Syndrome from 2 yrs ago has occurred again. She is hoping it is from a different pain receptor than the original because of the fibromyalgia. She explained how our bodies have memories of what occured during high stress times and will often go back to that. They have actually studied pain receptors and how they will soften, relax and you get relief. If you end up returning to a similar high stress situation the receptors can go back to the way they were. If only I could put in place everything that helped me to get out of that cycle of pain.

More Depressing News

After another day of the Hospitalist, Infectious Disease Dr and Oncologist all having a different opinion we are left with confusion and depression.

Latest scan shows a brand new 3X2 cm high probably of cancer on Larry's liver. The oncologist ordered a stronger dose of steroids. The hospitalist previously told us she thought it might be the steroid he was given with chemo that caused his spasms. ??

He still cannot keep anything down. Could not even tolerate liquids today.  I believe they want to first try one more time with liquids in the morning. If again he cannot keep it down, most likely they will be giving him a nutritional IV tomorrow. ??

Latest scan showed C.Diff stranding in his colon. Yet his culture came back negative. So now they are saying he no longer has C.Diff. We want to believe this is true. ??

Larry's spasms are gone but the pain is not being relieved. They have switched him to dilaudid injections. The location of the pain is mid lower chest area. Oncologist feels it is referred pain from the new liver tumor. Hospitalist previously told us it was reflux/GI distress. I had asked for a GI Dr consult this morning.
This evening inquired about it only to find out it had not been processed. Tomorrow I will call myself.

Larry asked me to inquire about home hospice.

3rd Trip to the Hospital

Larry never got his shower. By 1am this morning, Larry had enough of the hiccup spasms and vomiting, back to the ER we went. Their protocol for hiccups is to relax the body, yet nothing helped. 1:30am a shot of activan. 2:30am a shot of valium. 4am a shot of morphine. His body was completely relaxed except for his stomach area. Spasms and vomiting persisted. These spasms are awful and very painful. They actually seemed to get worse with the relaxation. They took him for a cat scan at 5am. Prior he had to drink a contrast solution. I am not sure how much actually stayed in him.

The cat scan results were verbal between the radiologist and ER Dr. His colon is in bad shape from the C.Diff. They called it a pseudomembranous inflammation of the colon. There was no evidence that the vancomycin had helped. They gave him a flagyl IV which actually has less response in helping get in under control in the research done. He has been on probiotics also, which have not helped so far. Could be due to his vomiting. I could not get a copy of the cat scan to see the pancreas results since they did not have it printed yet. It is Sunday and we will have to wait until tomorrow for the specialists.

I questioned 4 nurses and the Dr as to why they do not wear gloves in the ER. They have boxes of them on the wall. The only time they were put on was when they had to access his port. Blood cultures taken in each arm, IV fluids, shots into his port line, handling his vomit bag-NO GLOVES. I was told it was not necessary. I did not have the mental or verbal strength to disagree, at that time.

http://www.usatoday.com/news/health/story/2012-08-16/deadly-bacteria-hospital-infections/57079514/1

Awful....

Up all night with intense hiccups(meds not working) and vomiting/dry heaves(meds not working) until 6am. He slept for 5 hours. Ate some toast and it started up again. He is now pacing around the back yard carrying his bucket. This really is awful. Day 4 of this.

Ditto Today

Last month we did not feel any symptom could be worse than those rigor attacks and his infections. Well, we found another. 5 different nausea meds and none of them are working. Larry's vomiting and intense hiccups did not respond to yesterdays IV treatments. He went back to the Cancer Center today getting another double IV of fluids and steroid/nausea medication by IV.They again wanted him admitted to the hospital. This time Larry told them no. They said that if his symptoms continue through the weekend they will want to do an endoscopy.  He has not had anything to eat or drink of any substance for days. Eating just a few crackers and he loses it. To me, this has been far worse to deal with.

The clean up and having to work with the smell of bleach has activated all my health issues. Which in turn makes it harder for me to be patient with all that is going on. I am trying to give myself a break but find it hard to concentrate on anything else. I have learned today that it is OK for me to be teary.  I am having an emotional day-ok I said it!

Hopefully with Larry being done with the chemo today, his body will find its way. He did well last time with his blood levels. That will be known next week. He is so much weaker this time around because of all he has been through over the last 6 weeks. This is the first time in over a month that his line is disconnected from his port. That gives him a feeling of some freedom. He can also shower. That alone should make him feel somewhat better.

I am NUMB and Larry's the Energizer Bunny!

I do not know what will come next. We are afraid of the next.

Larry's chemo treatment of Folfox went fine until 6pm last night. Vomiting for 5 hours. I believe he lost an entire weeks of food from the amount of the cleanup. He was also awake ALL night with intense nausea. He cannot sit still from the steroid. Last treatment he welcomed all the energy. This time he is unable to sleep and can't stop talking. Is even talking to himself and the dog when I am not in the room.

I was on the phone with the oncology Dr at midnight asking for some meds that he could take sublingual. At Walgreens at 1am waiting in line. He had none of THIS the first time around. He has not vomited since he started the new sublingual med but is very nauseous and cannot eat or drink anything. Larry and I had discussed that he will not return to the hospital unless I am not able to handle the situation. I do not want him exposed to any more infections or unnecessary antibiotics.

Last nights Oncologist and this morning received a call from a different Dr(our Dr. is away for 2 days) wanting me to take him to the hospital. They must think I am mean but I told them both-No way! I agreed that he was probably dehydrated and needed an IV fluid. I told them that I wanted him to have it in the Cancer Center and then return home. I do understand their reluctancy. I also asked them to set it up with home health to teach me how to give it but they said they could not do that since I was not a nurse. Hmmm-I could give him a potent antibiotic but cannot give him fluids??

I am not handling this very well today. Just numb and don't want to move. Larry is now getting his IV hydration at the Cancer Center-yes they finally agreed. I dropped him off and came back home. First time I have not been with him. Just hoping they don't admit him.

As I said, we are afraid of the next.

Gearing up for the next Chemo Treatment

Thank you to everyone who has called, posted, emailed, sent cards and prepared food. It is comforting to know that so many are helping to build up his energy through their own.

Larry had a great day yesterday. His infection seems to be improving. He took an hour walk for the first time. He also lifted weights, stretched and worked on projects. He felt well until last night. He was up until 3am this morning with intense nausea. Meds would not give him relief. I believe he is trying extra hard to stay active because of increasing symptoms.

There have been changes over this past week. He no longer wants to sit on the couch. Only wants to sit in upright chairs. Lower back pain and stomach pain seems more consistent. This morning he used the word pain for the first time. Previously he would call it a little uncomfortable, sensations he can't describe. Yet mostly still saying to others he feels fine.

Mentally we are all being challenged. We could not help Laura move into her new apartment that she has a year lease on. Ended up paying one of her friends family to get her furniture moved. I am driving there today to see what she needs. My son and her will then move the rest of her boxes/bags from home tomorrow. This is not how it is suppose to be. This should be an exciting time for her and us. She is very excited about her new place but it feels all wrong because we were not there. All this is very depressing to Larry. He wants to go but still feels his infection is not completely cleared. He also knows that he is too weak.

Larry talked this morning about how much he misses work, his colleagues and his students. In another week he would be gearing up for the fall semester. He came up with a plan for himself to do some writing in hopes of being able to publish another paper. I believe this will help to keep his mind occupied and feel close to what he is comfortable and familiar with.

Today is the last day of my giving him an IV antibiotic-YES!!  Hopefully this will then keep him from running that fever and having rigors after this week's chemo. Without the ID Dr getting back to me, we started tapering his vancomycin dosage. Along with that we are upping the probiotic dosage.
I believe we will both feel better once the chemo starts to do its work.
Let's all pray that his second treatment will go smoothly. Love to all.

Melody

What is C. Diff / Clostridium Difficile?

I am sharing this information so that others become educated about this serious infection. The average person's chance of contacting this is probably low. Yet, I feel that the more people are aware, the chance will then be even lower. It is a lot of information. I compiled it from C. Diff support group sites, articles and a few medical sites. Interestingly, the medical sites had the least amount of information.
We do not know how Larry contacted it. The logical place would be in the hospital or one of the Dr's offices bathrooms. It is also possible that with his body being so immune compromised, it occurred all on its own. I do know that it has complicated his situation this past month so that he was not given a fair chance to slow down his cancer. We are both hoping that this week brings better results.

What is C. Diff / Clostridium Difficile?

C. Diff is a very tough bacteria that exists naturally in the world, but is usually associated with being prevalent in health-care settings. If the bacteria is ingested, the good flora in the intestines usually fights it off.  However, if  you are immune compromised, or if you are currently on antibiotics (or were recently), you may not have enough good flora in your gut to fight off  the bacteria.  Given this environment, the bacteria can take hold and multiply in the intestines.  This bacteria releases toxins which can result in very serious illness.  C. Difficile is also very smart.  When the bacteria is in a hostile environment (like when C diff treatment begins), it can form a hard shell and become a spore.  This spore can then lie dormant in the intestines until the next opportunity arises to thrive and multiply.

C. Diff Symptoms

Not everyone will necessarily have the same symptoms. Some may experience episode after episode of watery diarrhea, with or without mucous.  Others will experience colitis symptoms and may expel blood, and can also have intense abdominal pain and fever along with the diarrhea.  Quite often, ingesting food or water will almost immediately cause the patient to race to the bathroom as the body is always trying to expel the toxins, and anything else that exists in the intestines.

If you ever get stomach flu symptoms after taking antibiotics, get to the doctor, and do not take any medicines that will slow down the digestion process. Immodium and other anti-diarrhea OTC products  just trap the bacteria and toxins in your system even longer.  

Keep in mind not every case of stomach pain/diarrhea is caused by C. Diff. Yet if it is persistant you will want it diagnosed ASAP.  Wherever you go for diagnosis, make sure you tell them you have been taking an antibiotic, even if it was 2 months prior, so they know to test for C. Diff.  As a warning, much of the medical community is not real familiar with C.diff, so don’t let the doctor dismiss you by saying you are too young or too healthy.  C. Diff does not discriminate!  A stool test is not the most fun test to take, but a proper diagnosis is crucial to get Clostridium Difficile under control, before damage is done to your colon. Be sure that you get a PCR Assay test done on only the watery portion of your stool. This is the most current accurate way of testing in 2012. 

 Examples Of C. Diff Events

A Dr. prescribes you some Clindamycin (a MAJOR offender when it comes to C. Diff.- Dentists love to dispense it ) to prevent infection. You take the antibiotic for 7 days and the next thing you know, your intestines are suddenly revolting against you. You may or may not get a fever, along with any combination of the symptoms that were listed above.  At first you might think you are coming down with stomach flu.  However, it is a flu like you have never had before. All you know is that you are in misery, getting dehydrated, and losing weight.  What you didn’t know was there was a war going on behind the scenes in your intestinal tract.  That Clindamycin was destroying all your wonderful, good bacteria in your gut, and at the same time, you were unknowingly exposed to C. Diff somewhere out there in the world.  C. Diff had no natural enemies in your gut, and since it is an opportunist, it took over and started multiplying, releasing those toxins along the way.

Doctors offices/Hospitals are the highest risk areas. High touch surfaces-including door knobs, toilet handles, faucet handles, blood pressure cuffs can contain spores.  In the hospital-bedrails, call buttons, remotes, phones, flow control devices for IV's can all be contaminated. In one study spores were found in 49% of rooms occupied by patients(CDI,apic, 2008). It is important to understand the persistence of C. Diff in the environment. Several studies found that spores can remain on hard surfaces, which have not been cleaned properly, for as long as five months.

C Diff Prevention Tips:

1.    Avoid antibiotics if at all possible.  Make sure what you have is a bacterial infection, as antibiotics do nothing against viruses.  (NOTE: This includes topical antibiotics, especially clindamycin-based creams.)  

2.    Altering the acidity of the stomach and GI tract can kill off good bacteria, allowing C-Diff to grow out of control. Proton Pump Inhibitors (PPIs) such as Prilosec and Nexium are now thought to put people at more risk for developing C Diff. http://www.fda.gov/safety/medwatch/safetyinformation/safetyalertsforhumanmedicalproducts/ucm290838.htm

3.    Wash your hands constantly, and make sure you wash for 20-30 seconds, being sure to scrub under the fingernails.  There is also a very small percentage of adults that naturally carry the bacteria, but are asymptomatic.  These carriers may be leaving C. Diff bacteria just about anywhere (like on shopping cart handles), so vigorous hand washing is crucial no matter where you are.

4.    As a follow-up to point number 3, do not put your fingers in your mouth.  Do not bite your fingernails.  Do not make it easy for the bacteria to get into your system.

5.    Change toothbrushes after every illness.

6.    Take probiotics every single time you take antibiotics, and also eat some yogurt or kefir. Lifeway makes a Kefir smoothie product that tastes much like yogurt and is loaded with great probiotics. Just be sure to purchase kefir/greek yogurts with no sugar. Add your own cinnamon, fruit or stevia. Also, oats contain beta glucans and are highly beneficial in helping to re-establish the gut flora. Purchase organic when possible.    

7.    There are 2 probiotics that have been found to help fight C. Diff:  Saccharomyces Bboulardii  and Lactobacillus GG. SB is a yeast-based probiotic which is unaffected by the bacteria-killing affects of antibiotics, so it can be taken any time of day.  Lactobacillus GG is a bacteria-based probiotic. It is best if you take your bacteria-based probiotic 2 hours or so after you take your antibiotic, so the antibiotic does not destroy the good bacteria in the probiotic .Continue to take the probiotics for a couple months after you finish your antibiotic to help keep building up that gut flora.  

8.     If you are ever hospitalized, bring your own cleaning solution and wipe down that room.  The ONLY thing that may kill the C. Diff bacteria is bleach.  Bring a spray bottle with a 10:1 bleach/water solution and wipe down the bed rails, the phone, remote, etc. Regular wipes will not work.  In addition, make sure your hospital roommate does not have symptoms of C. Diff.  Patients with C. Diff should be placed in isolation, but hospitals do not always take the illness seriously enough, or recognize it quickly.

9.    Insist that health care workers wash their hands before treating you, or ask them to put on gloves.  Do not settle for them to rub a little hand sanitizer on their hands, that does nothing to kill C. Diff.  It is the vigorous hand-washing that will get Clostridium Difficile bacteria off the hands, along with good paper-towel drying.

10.  There is much conflicting advice on effective treatments against the spores. Alcohol based cleaners are not effective yet are still being used. Soap and water can help remove spores but does not kill them. It just washes them away. Yet this is still one of the best methods of prevention. Spores have shown to still be active after 10 minutes of washing with bleach. Yet this cleaning method is the only method cited as a factor in reducing the incidence of C. Diff. in hospitals. However the study that sites this also notes that the results were not constistent.

11.  C. Diff can strike up to 60 days after completion of an antibiotic, so don’t dismiss the possibility of C. Diff just because you didn’t take antibiotics in the last couple of weeks.

 What If You Need Antibiotics

Overuse of antibiotics has become a real problem as bacteria mutates and the drugs become less effective. Doctors have over-prescribed for decades and now they are becoming much less effective. Unfortunately, most people will need an antibiotic at some point in their future.   Assuming you have a bacterial infection and you have no choice but to take an antibiotic. If you feel yourself getting sick, start taking probiotics to try to build up the gut flora.  

 Ask for sputum cultures if you have a sinus/respiratory infection.  That way                                                   you will know if the illness is viral or bacterial. If you have a Urinary Tract Infection (UTI), make sure the bacteria is cultured so that the doctor knows what type of antibiotic will kill the bacteria instead of just guessing with a broad-spectrum antibiotic. If you must take an antibiotic, ask your doctor for the most narrow spectrum antibiotic you can use that will still kill the infection. The following is breakdown of how ‘safe’ different antibiotics are.  

Following List is compliments of Cdiffsupport.org.  This website provides a wealth of information and is a great resource for anyone who needs C. Diff support.

 MOST LIKELY TO CAUSE C. DIFFICILE:

Clindamycin (aka Cleocin)
Keflex
Ceftin
Ceclor
Cipro (this was just moved to high-offender from medium)
All other cephalosporins
Amoxicillin
Augmentin
Penicillin VK

MIDDLE OF THE ROAD:
Levoflex (also Levaquin)
Tequin
Avelox
Bactrim
Doxycycline
Erythromycin
Biaxin
Zithromax

SAFER TO TAKE:  (Remember, no antibiotic is 100 percent ‘safe’ when it comes to C Diff)
Macrodantin (Macrobid)
Sulfa
Tetracycline
Aminoglycoside
Flagyl (metronidiazole)
Oral and IV Vancomycin

 Tips For Dealing With C Diff:

If you do get C. Diff, consider combining your treatment with the above mentioned probiotics.  Drug treatment does work but not for everyone. It can suppress the infection but not eradicate it. About 20 percent of people will relapse within a couple months or so of ending treatment, and it can be a very difficult bug to kill if you have repeated relapses.  So, build up that gut flora as much as possible so you create as hostile an environment in your intestines as possible to keep the C. Diff away.  Also, if you are infected, clean the bathroom with a bleach/water solution, and always close the lid of the toilet before flushing to prevent any bacteria from being propelled out of the toilet bowl.  (Closing the lid of the toilet before flushing is a good idea regardless.)  If you have a second bathroom make sure rest of family members use that bathroom, and you use your own, if you use good techniques your family will be spared. Again, hand washing is very important.  Also, try to eat a variety of foods if your stomach can tolerate it, and eat yogurt and/or kefir daily to help build up the intestinal flora.

 

C Diff Treatment of Vancomycin

 

The first treatment is usually for 14 days.  If diarrhea is not under control,  the doctor may consider prescribing 6 weeks or so of tapering/pulsing the Vancomycin

Week 1:  125 mg 4x/day

Week 2:  125 mg 2x/day

Week 3:  125 mg 1x/day

Week 4:  125 mg once every other day

Weeks 5 and 6:  125 mg once every third day

The reason for the pulse/taper method is so that the body has a chance to rebuild the flora as the amount of medicine is decreased. Doses are later given on alternating days to attack any spores that hatch back into bacteria, in hopes of killing off the remaining spores.

If Vancomycin does not work, there are other drugs that can be considered.  Dificid (Fidaxomicin) is a drug that came out on the market in 2011 that is said to have a lower relapse rate than Vancomycin. However, most insurance companies will not cover this as a first drug.

Treatments on the Horizon For CDiff

C Diff has gotten a lot of attention in recent years, mainly because there have been an increasing amount of cases each year.  However, there is a lot of research going on regarding C Diff, which will hopefully lead to more successful treatments in the future.

A few of the treatments currently in development are as follows:

1.    Monoclonal antibodies.  This therapy would still require standard antibiotic (vanco/flagyl, etc) treatment.  However, monoclonal antibodies would be injected via IV during antibiotic treatment in the hopes of preventing relapse.  This treatment is currently in phase III clinical trials.

2.    Vaccine.  There are two different companies that have a vaccine in progress.  Intercell just completed a phase I trial and Sanofi-Aventis is in phase II trial for C diff prevention (as of Feb, 2012).

3.    Non-toxigenic C Diff treatment. Viropharma is in phase II trials for their c diff treatment, which actually uses C diff against itself in a sense. The patient would still take standard C diff antibiotic treatments such as vanco, dificid, etc.  After completion of treatment, a two week oral dose of the non toxigenic strain of C diff called VP 20621 would be taken.  In this case, the non-toxigenic c diff bacteria would multiply and take over the intestine, which would crowd out and not allow for toxigenic C diff to take hold.  Over time, normal gut flora would develop and repopulate, but while that is in progress, the VP 20621 would prevent toxic C diff from recurring.

Chemo scheduled again

A lot has been going on this week. Ups and downs but I believe knowing that Larry will be getting another try at chemo will help both of our mental states. Talking to his oncologist this morning was a tough reminder of his situation. It is either try again with the chemo and attempt to slow down the PC or stop and move to hospice. He will have his 2nd chemo treatment next Wed on the 15th.  Five weeks after his 1st.

Larry wants to try again with the understanding that it could bring back his bloodstream infections. He does not want to have the fever and rigor attacks again. We are going to do everything we can to think positive and believe that they will not return. This Sat is his last IV antibiotic treatment for the blood infections.
We were also told the chemo could worsen his C-Diff infection. He is very tired of being home bound with only going on his daily walks. As of yet, this infection does not seem to be under control. Today marks 2 weeks of being on meds for it.

I am going to share the information I have on C-Diff because I believe it is something everyone needs to understand since it is so common now. I also will include information on how you can take precautions from getting it. C-Diff infections are now occurring in babies, pregnant women, children, teens and adults. No one is excluded.

It seems that our house and car are reacting to all the stress and breaking down where it can. These aggravations are mounting for me but I am picking and choosing which to deal with. Laura's car decided to sound like it had no muffler. Took it in yesterday and it turned out to be a pipe broke connected to the catalytic converter. After that repair and other things-$500. We are 3 years behind our need to have the timing belt and water pump replaced, total bill around $600. Gee, what were we in the middle of 3 years ago? That's right, my cancer. That expense will have to wait. I need to buy another car for me. Our front and back door are having big issues. How to shop for a car and doors in the middle of all this??

I resigned from the board of Healing Partners of Greater Chicago and am trying to get everything turned over to them. Is it going well? My computer decided to put my files into computer outerspace. I and others cannot locate them. I was able to get their annual report done but would like to finish their 6/30 year end work so everything is clean for the next treasurer. Letting a few days lapse in hope that they may fall back to earth.

Thanks again to my friends who are preparing food. This is helping me in ways I did not realize. Not having to think about one meal per day is wonderful:)  Peace and Love to everyone.
Melody

Making Memories

Thank you Jo for reminding me to make every day a memory of some kind.

There is now a somewhat calm in all the crisis situations we have had. I find myself wanting to be apart from Larry, even be by myself more. I guess I am in the "get me out of this" mood and find myself escaping via the computer, errands and unnecessary busy tasks around the house. I am sure he is feeling this.

I remember that I felt it when I was recovering. I felt alone and as if he and the kids did not want to be around me. Space can be replenishing or it can be isolating.

His situation is so different since there is an unknown time limitation. So, I will try to find something every day that I can look back on and be able to say "Making Memories".

Food Choices

When you have cancer, red meat is one of the first items removed from your diet. It is amazing how the body craves what it should not have. When Larry got out of the hospital a week ago, one of the first things he wanted was an Italian Beef sandwich. He ate it and lost it all within 30 minutes. I was hoping that would help stop his cravings. I want him to make better food choices and quit asking for what he cannot tolerate.

Five days later, Larry wanted a hamburger on Thursday. I told him I could defrost some bison and make him one. Bison is very low fat but his response was a big NO! All those years of his eating Quarter Pounders at McD is what he really wanted. So I asked him if I could get one from a restaurant that had somewhat quality beef.  It satisfied him and after, he said it was the tastiest hamburger he ever had. He was not well the remainder of of the day. Yet he said that it was still worth eating the hamburger.

It is very hard for him to not be able to eat what he wants. This is his first experience with having to eliminate certain foods. I struggle with all of this. Part of me wants to give him anything he wants to eat. Food is not going to get rid of his cancer. However, seeing him get very sick from what he eats is not pleasant.

I talked to him about how he wants to feel each day. What he has control over and what he doesn't. That talk must have helped.  I did see him yesterday refuse ice cream that Laura had brought. Maybe, he is finally taking control.

Blasto to the Moon----

I do understand that my son, Larry Kyo, would like to take a vacation. He has worked hard this year and wants to go away next week with his friends. He was even kind enough to ask me if it would be ok. It was, UNTIL he told me that they are going back to camp at the same location in the Smoky Mountains of North Carolina where he got his Blastomycosis from last summer. He had a serious case of Blasto and has just gone off the antibiotics for it. He is willing to risk this just to drive fast on some road with twists and turns? And he tells me not worry. My worry is completely burned out.

Hubby Larry did finish his grading! Had to complete it using my computer. Another one of those aggravations that should not have been a big deal but ended up being so. Best Buy, HHgreg and Abt had no CPU towers in stock under $800. Had to order it and should be coming this weekend. We still cannot believe that his computer got fried from a storm.

I see him getting physically stronger. I am trying to help him with the mental part but it is very difficult. This morning we discussed what he would be doing today. The first thing he did was do 16 push ups. A few days ago he could only do 10 so this is good progress. He was very upset at only being able to do 10. Never having any physical limitations before is adding to his depression. When we see the Dr next week I am hoping he is able to get some medication to help with this.

We have not received the blood test results from this week. Still not seeing any signs yet that the one infection is better. Hoping that the blood test gives us some good news for the blood infections.

A big THANK YOU to Kirstin for bringing us a delicious salmon dinner last night. Also, to Joann H. and Joann C. for supplying us with dinner a few weeks ago. I love to cook but I am like Larry's computer-fried! I cannot get rid of this fatigue. Go to bed with it and wake up with it. Whoever, reads this today-send us both a mental thought of energy. It will be very welcomed.

Hoping that everyone is enjoying the summer and staying healthy. Love,
Melody