Help with Treatment Options

[choijk]

Hi,

I was wondering what your thoughts were regarding my dad’s treatment options.

My 71 yr old father was dx with MDS (RCMD) on 01/13/07 when he collapsed due to a low hgb (I believe it was a 6 at that time). His BMB showed that he has no abnormal chromosomes nor any excess blasts. His white blood cells and platelets are normal but his red blood cells are affected and his hgb just fell again last 03/12/07 when he got another 2 pints of transfusion.

The doctor laid out 2 options for us: Either to continue with transfusions with the risks involved or to proceed with Vidaza, where the doctor believes there is only a 10-15% chance that my dad will benefit from the chemo.

Any thoughts? I am hesitant at this time to proceed with Vidaza because my dad seems to do well as long as he gets his transfusion. But as we know, there is a risk of an iron overload. At this time, it seems as though my dad’s iron intake is pretty high so I will be bringing up Exjade to my doctor’s attention.

Thank you in advance for any comments

[Neil]

Has his doc discussed Procrit or Aranesp?
If his epo count is low to normal and his iron levels are ok there is a possibility one or the other could help.
I was on Procrit for 32 months and switched to Aranesp in June of 2006. Aranesp lasts a bit longer than Procrit. I am on a 3 week interval.
It keeps my HGB in the 11.0 range.
Best of all no side effects.
Think about it.

[choijk]

Thank you Neil for the message.
We had a third opinion with a doctor at UCLA and he indicated that my dad’s something (I dont remember the name) is over 500 and that Procrit normally works for patients with a ____ level of 200.

Today we have an appointment with our treating physician at Kaiser. I will definetly bring it up to him and I’m sure that the UCLA doctor’s medical report has been sent to him now for his review.

I am just torn as to what type of treatment we should proceed with at this time. From reading through the posts last night, I dont want my dad’s levels all to drop and that maybe there will be excess blasts after Vidaza.

But then again I dont know if we should take the “wait and see” approach. A transfusion is a must and one day there will inevitaby be an iron overload. I just dont know! I keep having nightmares and I just wish I can make the best decision for my dad at this time. Help!!!

[choijk]

Neil,

My dad received his first Procrit shot today. Our doctor indicated that most likely it won’t work but that, like you mentioned, since there are no side effects, that it was worth a shot. In the meanwhile, my dad’s hgb is holding up at 9.4 today. (he received his last transfusion of 2 pints on 03/12 where his hgb stood at a 6.6) . Our doctor was happy that my dad’s hgb stabilized at a 9.4 at this time. Our next appt is in 2 weeks. I hope that Procrit will be working!

[Neil]

Hi June,
Lets hope the Procrit works!
If it does not,he can still rely on transfusions. They can be inconvenient, but they can support his red counts for many many years. A friend was on TX for over 15 years. He traveled internationally and led a fairly normal life. Had to chelate to keep his iron overload under control but Exjade works on many.
If TX is the only option make absolutely certain he gets irradiated/filtered blood. This is absolutely necessary to avoid downstream complications.

[choijk]

Neil,

Thank you again for your post!! It is encouraging and I see a bright future. Unfortunately, not all my days have been bright ever since I found out about my dad’s dx but I keep learning everyday and I found this forum to be really helpful!

I was wondering, what are your thoughts on alternative methods? i.e., fish oil, juicing, etc? I am trying to think of a healthy diet for my dad but don’t really know at this time what is good for him and what isn’t as effective. Any thoughts?

Thank you !

[Neil]

I have tried various alternative methods, but none helped. I gave them up to a year with no positive results. BUT that is not to say that others would not be helped. This disease reacts differently on each of us.
I do take Vitamin C, B-Complex, A multi-Vitamin, Fish Oil and garlic pills.
My doc prescribed vitamin B-6. I added B-12 and folic acid.
Also try to keep the carbs and fats as low as possible and get as much exercise as I can tolerate.
Make sure his doc agrees with any alternatives!
Be sure to keep him in contact with his primary doc. MDS can impact other organs. It is important that his health aside from MDS is monitored. It is a good idea to be pro-active with dental health. MDS can have some nasty effects on dental health. Best to stay on top of a healthy oral hygene program. Don’t let it get away. I get my teeth cleaned every 3-4 months.
The vast majority of MDS patients do not succumb to MDS. It is the impact it has on other parts of the body that creates problems. Infections, heart problems. Lung issues, spleen problems, kidney, liver difficulties. Infection seems to be a very serious issue for those with low WBC, particularly low neutrophils.
Anything one can do to support these potential problem areas is a plus.

[choijk]

Thank you again for your post! I find myself on this forum everyday searching for informtion, whatever that may help. I brought up fish oil and cod liver oil to our hemotologist, and he thought it was a great idea. he indicated that although he does not have any scientific data, he is all for alternative methods. so now i am in the search for any information regarding this fish oil. do you mind if you share what type of fish oil pills you are currently taking right now? Thanks again Neil and thank you for those tips!

[patti]

June,

My MIL has only done alternative therapies and has done quite well. She actually transformed to AML over a year ago and is just now succumbing to it’s affects. Her dx is different then your dad’s.

You can do a search of this forum for “supplements”, “alternative therapies” “chinese medicine,” etc. You can also search for posts from Marla, myself, and/or Seekay or Christine. Most of these posts will have tons of natural info you can read up on.

As for cod liver oil. Absolutely a must. Pills will not cut it. It takes 15 pills to equal one tablespoon of CLO. Our family is liking the Carlson’s Cod Liver Oil Lemon flavor. We just switched to this. It’s great! If one happens to burp it up, all you taste is the lemon! Prior to that we were using Nordic Naturals Arctic Cod Liver Oil orange flavor. It wasn’t bad, we just like the Carlson’s better. So I would recommend you go with a liquid CLO. CLO over straight fish oil is also a better choice.

As for diet changes, would recommend you read the book, The Makers Diet. It will cover nearly all diet stuffs that a diseased person should do. Mainly a whole foods diet, nothing white. Foods as close to their natural form as possible. Good, organic meat is a MUST for anyone with a blood disease. Not everything in that book would apply to your dad because blood diseases are not the same as tumorous cancers, but if you get the basic diet info that will go a long way.

Anyway, hope this helps to get you started.

Patti

[Neil]

Hi June,
Am taking Sundown Fish Oil, 1000 MG.
Don’t think the brand is significant. Make sure it has Omega 3 Fatty Acids.
Patti’s advice on Cod Liver Oil make a lot of sense.
Make sure he gets periodic CBCs to track his counts. I chart mine on a Excel spreadsheet and graph them. Makes it easy to spot long term trends. Be aware that counts do jump around. Do not become alarmed if his they (particularly platelets) change happen to go down a bit now and then. But watch for them to move upward at the next blood draw. The long term declines are what to watch for.

[patti]

Neil is right regarding CLO brands not really mattering. What does matter is how much and what kind of chemicals are in the oil from the fish. You basically want to look for CLO that states “tested free from impurities” or “tested mercury free,” etc. Anything along those lines will be fine. Usually taste is a factor for most people that is why I recommended the brands I did.

Also, most folks don’t understand the dosing of CLO/fish oil. A bottle will say for example, “1500mg Omega threes” or whatever. But that isn’t the amount of DHA and EPA in the actual oil. That is the overall amount of total Omega 3’s. These could come from added vit. A or vit. E, or other oils that have omega 3’s. What you need is 2000mg of DHA and 1500mg. of EPA. So if you look on the bottle it will show you how much EPA and DHA is actually in a serving. Then you have to multiply it out to get the amount of oil you need. So for *most* capsules (because some are plus or minus this) you will need 15-30 capsules to equal these amounts depending on the brand. It’s just easier to take 1 tbls of a liquid. The actual part of the fish oil that provides health benefits are the DHA and EPA. I did not want to taste the liquid so I tried to take all the capsules one day. It only took some throwing up for me to decide liquid was the way to go. Duh.

Hope this helps understanding fish oil better.

patti

[choijk]

Thank you SOOOO much for this information!!! I actually went to Whole Foods today and was overwhelmed by the selection of Cod Liver Oil. I saw some that were in capsules and some that were in oil and I just came home to write a post when I found both of your great advice! Thank you so much! I have couple more questions though… how many times should I give this to my dad and in what dosage (Patti, I believe you recommended 1 tablespoon) and whether it should be taken after meals. WHen I was reading the labels on the cod liver oils I found today, none came with directions.

THank you again! God Bless!

[patti]

Cod liver oil is best taken in the morning right before eating breakfast. If it were me, I’d start him taking 2 tbls a day for six weeks (this builds the system up to a normal level) and then drop to 1 tbls daily after that (that maintains a good level of Omega 3’s). The reason for eating it prior to food is that it will tend not to burp up so much if food is on top of it. Also, early in the day pretty much gurantees that if he does burp it up once or twice, it’ll be done before bed so it won’t drive him nuts all night! That’s also why I like the Carlson’s lemon flavor because if I do burp it up once or twice, it’s not fishy – it’s all lemon. I can handle that.

Glad all the info is helping. Always feel free to ask and like I said, read old posts. You’ll find them very helpful.

I am thrilled to hear your dad’s doc is into natural medicine. We were harassed, shunned, talked down to, pestered, etc. by mom’s first three doctors for doing natural medicine. Doc number 4 has been neutral but kind about it. You have a gem! Don’t lose this guy.

All the best,

patti

[choijk]

Hi Patti!

Thank you again for the great info! All this information is better than gold! I have been on this ongoing search to find the best treatment plan for my dad. Hopefully it will pay off and he will receive less transfusions.

My dad’s doctor IS a gem! We are very fortunate to have found him. My dad is being treated at Kaiser in LA. Our hemotologist, just joined the Kaiser team from the City of Hope. He is patient and answers my billion questions I take in to every appointment and explains everything thoroughly that we feel comfortable when we leave.

I will definetly continue to read throughout the old posts!

[seekay]

Dear June,

Glad to see what Neil and Patti had to see. They are very kind and wise.

Whole Foods carries Nordic Naturals Fish Oil, which is the brand that Patti recommended awhile back; and if you search for discussion on this forum, you will find at least two people who had pretty amazing responses after starting with their Arctic Cod Oil.

After reading those posts, and some thought, we are now taking the Nordic Naturals Fish Oil, and Barleans Organic Flax Oil, also avail at Whole Foods. Pure oils are better, I think, than capsules, in terms of potency. Those two oils are very high quality.

I’m not sure about whether fish oil or cod liver oil is better. I seem to recall some concerns about more possiblity of contamination from the liver oil, simply because of its source. On the other hand, those results I read on this website were from persons who were taking the Nordic Naturals Arctic Cod Liver OIl, and that company seems to be doing a very fine job of making a pure product.

The other general thing to do is to try to remove all contaminants/toxins from your father’s daily life. Hard to do. Start with his drinking water–I would look into getting a whole house carbon filter that removes chlorine and also make sure he is not drinking fluoride. We just installed the $164 whole house activated carbon filter from Pure Water LLC in Denton, TX: http://www.pwpgazette.com. Their main man, Gene, is an (older-sounding) courtly gentleman who will generously share his wealth of information about water purification: 940) 382–3814

I wouldn’t rely on reverse osmosis to remove fluoride. I think the only failsafe method is steam distillation. If you need to, you can buy distilled water from a reputable company for your dad to drink.

And then there’s diet & juicing. There’s a lot of info on this site (Marla, Patti, and myself and some others). As a start, it is good to avoid salt (includes baking soda, but not powder), sugar, transfats, all processed foods, and dairy. Eat as close to the earth as possible: organic and biodynamic produce, grassfed and free-range if you need to eat meat and eggs.

many more vegetables and fruits than animal proteins. cook only in stainless steel or glass. as much organic salads as he can stand. you can get huge quantities of phytochemicals from greens from juicing them. romaine, kale, endive, inner beet leaves, green apple, 1/4 of organic green bell pepper– this makes a great medicinal-quality green juice that will give the cells a vital kick.

I really feel in my gut that it is our toxified environment, and exposure to certain toxins combined with organ weaknesses (either genetic or acquired through life patterns) (e.g., liver) that “causes” this disease. The toxins can come from past drug use, exposure to benzene, horse fly repellent, paint thinners, jet fuel, you name it–when someone’s body is exposed to higher than average quantities of certain toxins for a period of time, it can cause a break down of the body’s ability to protect itself.

So, it follows, for me anyway, that getting the toxins out of the body, and supernutrifying it helps the immune system to regain its ability to heal.

It is anathema to the conventional medical world, however, even to consider that nutrition and detoxification is the cure to cancer. Obviously, $$ plays a big part in cancer treatment, but also, the way that doctors view the body, piecemeal rather than as a whole, has much to do with it.

Sincerely,

Christine

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