Harvey Update
I wish I had new stuff to report. Harvey continues to have fevers, some of them alarmingly high and accompanied with shivering and chills - what is affectionately known as “Shake & Bake” by cancer patients. The graft continues to do well. As of today the platelet count is 45K! Long way up from when it used to be 10K with help from platelet infusions and not that far from 50K when he is considered to be officially “platelet engrafted”. The worrisome thing is that the latest CMV viral count has not budged much, it is still hanging tough at ~ 2K. They increased the ganciclovir dose as of today and if that does not work the plans are to switch to Foscarnet on Monday of next week. Local guidelines call for administration of foscarnet only as a hospital in-patient procedure and Harvey would very much prefer not to have to go back into the slammer. Hopefully, the higher ganciclovir dose will have kicked CMV butt by next week and we don’t have to consider Foscarnet.
“Let Them Eat Yogurt”
Since I do not have much news to report on Harvey, I will address some of the issues raised by our reader’s comments on the previous post.
Probiotics are an important part of keeping the gut healthy. These are ‘good bacteria’ that have learned to live in harmony with their human hosts. When their colonies get wiped out for whatever reason, most people get a bad case of diarrhea. One of the major causes of wholesale death of gut bacterial colonies is use of broad spectrum antibiotics. Think back to all the times you had heavy doses of antibiotics, for whatever reason. As the days of antibiotic therapy went on, I am willing to bet most of you got a case of “the runs”.
A simple way of helping your gut maintain a healthy ecosystem of good bacteria is to use foods that are a good source of probiotics such as yogurt. In recent months yogurt companies have come out with a bewildering array of “probiotic” yogurts. Harvey and I have become fans of “Danactive” and “Activia”. (No, I do not own stock in Dannon - and you are welcome to try other brands that you might find better tasting). The trick is to make sure the yogurt you do eat has “live” bacteria. A decade ago almost none of the national brands had live bacteria and you could get the live bacteria variety only in health food stores. If like me you are willing to go the extra step, you can make your own yogurt. It is not at all hard to do and you can get a good yogurt maker and starter for less than the cost of a family meal at the local McDonald. There are also probiotic capsules you can buy, I think the brand name is “Culturelle”.
Keeping your gut well populated with good bacteria is good for another reason. It is a jungle out there. If there are no good guys occupying all the eco niches available, bad guys can get a toe hold and start capturing more of the available real estate. As anyone who has gone through an infection of C. Diff can vouch, this is one nasty stomach bug that you do not want to encourage. Most of us are infected with C. Diff at some point in our lives (it is transmitted by poor hygiene, water contaminated with human waste etc) and our guts retain a sample of the bacteria. Take away the protective effects of good probiotic bacteria and C. Diff may grab the window of opportunity and flourish. C. Diff infection during stem cell transplant carries a still penalty - it is one of the first bugs that they tested Harvey for. I am happy to report Harvey’s gut is well populated with good bacteria and negative for any nasty C. Diff.
Graft-versus-Host-Disease (GVHD) is one of the most important and negative aspects of stem cell transplants. It is the evil twin of much desired Graft-versus-Leukemia (GVL) that is so important in eradicating remaining traces of cancer. GVHD can take place in many different organs: skin, gut, liver, even the eyes. Typically, gut centered GVHD is the most common, along with skin GVHD. There are many theories about what precipitates GVHD - this is an intensely researched area of research as you can imagine. One of the theories goes like this. During the preconditioning chemotherapy / radiation regimen of the transplant, the gut is stripped clean of its protective probiotic bacterial colonies. This in turn leads to inflammation of the lining of the gut.
Step two, the new graft gets settled down and starts making effector cells such as T-cells. These new T-cells look around, sense the massive danger signals coming in from the inflamed lining of the gut and rush to join the “battle” they think is going on. Problem is, these newly minted T-cells from the newly engrafted stem cells do not quite know how to tell friend from foe. Net result, we have a situation similar to the infamous keystone cops, T-cells firing their ammunition all around without necessarily hitting any bad pathogens. This over-the-top and poorly targeted immune response of the newly minted effector cells (T-cells, NK cells, macrophages etc) causes significant damage to the tissues of the gut, killing many of the cells lining the gut and precipitating gut GVHD. The worse the damage to the cellular lining, the more the inflammatory signals getting out and calling even more troops to the “party”. You get the picture, this is one cascade of events you do not want to trigger.
Since there is not a whole lot you can do about avoiding chemo and radiation prior to transplant, the next best thing you can do is soothe down your gut and resolve any inflammation as early as you can, before the ever so efficient (not!) T-cells decide they need to get involved in the process. Probiotics are an excellent solution. Believe it or not, a recent article and editorial in the ever so professional and ‘starchy’ journal “Blood” addressed this very issue in a articles titled “Graft versus Yogurt” and “Let them eat Yogurt”. I believe I reviewed these articles earlier on our website clltopics.org , you can look it up by searching for the key word “yogurt” in the search box at the top of the home page.
Making “Raita”
Most Americans are used to eating yogurt that has been sweetened with sugar, fruit or sweeteners. Purists in India would shudder at the concept. Most Indians eat yogurt as a regular part of their diet and kids are fed yogurt even before they become toddlers. I have eaten yogurt all my life, most often just plain. On more special occasions or when I have the time, I make a popular Indian dish called “Raita”. It is very easy to make and I thought I would share the recipe with you.
- Peel, core, de-seed and dice fine a couple of medium sized cucumbers.
- Blend in a quart of yogurt (whole milk variety tastes better, but you can use low fat or fat free if you must).
- Add finely chopped green chili peppers - make it as hot or mild as you wish. I use Jalapeno peppers.
- A generous dash of lemon juice, salt & coarsely ground black pepper to taste, half-cup of chopped fresh cilantro - and you are done.
- Serve chilled. If you wish to make it more festive looking, you can also add grated baby carrots, finely minced sweet onion, finely chopped red bell peppers.
Be well,
Chaya
French
German
Spanish
Italian
12 comments on "Eat Your Yogurt"
Follow-up comment rss or Leave a TrackbackDear Chaya, I continue to read this journal everyday looking for your post. I wish wholeheartly for Harvey to get rid of his CLL once and for all. What a glorious day that will be. Can we have a party? Believe me, I will be there with bells on. Sounds like you’re having a few bumps in the road. Stay strong my friend. Tell PC we love him and are praying for him.
Chaya,
Hang in there! I went back and checked my wife’s blog for day +48. We were facing the exact same issues. It WILL get better! in fact, “Harvey” is ahead of the game with those fantastic platelet counts:)
http://ackjackie.blogspot.com/2006_05_01_archive.html
Dear Chaya,
I will pray the fevers pass. Other things are going well. I so admire both of you and hope you can go home soon. I know you miss EGCG and your home, Beth
We hope this bump in the road passes quickly! Thank you for the information on probiotics. As always your postings and generousity is appreciated.
Chaya: Thanks for posting. I check everyday and wish the best for you and Harvey.
Chaya, I’m not sure that shared worry helps Harvey much but thanks for letting us know what’s up even with lack eventful things to share. Speaking of nutrition; does Harvey have a diet that includes supplements like Vitamin D3 etc. and are supplements a good idea this early in the game? Are you his nutritionist or does his hospital care include a diet protocol? I could imagine any hint of GVHD might alter what one could eat.
While the transplant program does not give us a list of do’s and dont’s when it comes to what Harvey may eat, they have the last say on all medications - and that includes supplements like Vitamin D3. No, Harvey does not take any supplements, other than the multivitamin that has been approved by the Investigators.
Maintaining adequate nutrition is a problem. Harvey is going through a period of anorexia, nothing tastes good and he does not want to eat unless and until I nag at him. I am sorry to report he has lost weight in the last month or so, weight that he did not need to lose.
Just in the last couple of days he has been put on a drug called “Marinol”, a semi-synthetic analog of one of the components of marijuana. It is supposed to help with improving appetite, but none of the “fun” side effects of marijuana. We shall see.
As you would expect, Marinol is much more expensive than the weed you can buy at the street corner on most cities. Very strict prescribing restrictions guide the availability of Marinol - unlike the ease with which most teenagers can get the natural form of the same drug.
Chaya, Perhaps you might remind Harvey that he is “eating for two”. Sounds as if boy cord Seattle Slim is growing beautifully, and growing boys need all the “groceries” they can get. Hopefully, the Marinol will help turn this corner.
Thank you for your postings and the invaluable information you continue to share.
My thoughts and prayers continue to be with you both.
Chaya and Harvey-
I’ve been away from my computer for almost two weeks while vacationing. Good news about the platelets! Bad news about the CMV or whatever is causing the fevers! Thank you for sharing all of it with us so fully. It takes strong people to deal with all this, and both of you are strong!
We do have a beautiful spring in Minneapolis when it finally comes, don’t we?
I’ve just started reading ‘the patient from hell’ by Stephen Schneider so naturally (lovingly!) my thoughts went to you; the innovative, tenacious, meticulous, generous Venkats. I am thinking and checking daily and sending positive thought to Harvey, Slim, Chaya, and all the family.
Chaya and PC,
Congratulations on the platelet count going up. We check every day to hear news about ‘Harvey’ and we are sending our vibes for the fevers to end and the appetite to return. Thanks for the post about yogurt. We have been making our own for many years. It has a bit more tang and sometimes comes out a little less solid than commercial yogurt, but you know what is in it when you make it yourself.
Our thoughts are with you. Keep strong, you will get through this. You have lots of friends rooting for you.
Chaya and PC,
As a fellow Indian, I can vouch for the benefits of homemade raita and ate it almost everyday growing up. I have very fond memories of my grandma making a fresh batch regularly and having it with most every meal.
Robert and I are following your journey closely and appreciate your posts. This journal and clltopics in general really is the ‘bible’ for CLL patients. Thank you for letting us share in your journey, the candidness of your posts, and for educating the CLL masses. Your efforts are much appreciated.
Best,
Robert and Hardip