RCMD RBC Anemia improvement

[jga_socal]

Hi. My first post. Yay. I hope my tag line has enough of the basics on my case. The reason I decided to join and post is because I’ve had a very sudden improvement in my red blood cell (rbc) counts and want to share the info to see if anyone else has had a similar experience.

My hemoglobin (Hgb) count was 6.1 when diagnosed last January. After the mds diagnosis by the onc/hemo doc they pumped me up with 5 pints of packed blood; leudo reduced, irradiated, etc… I felt like a million bucks even though i was only brought up to a Hgb of around 10.5, about 70% of the normal 15. quickly found out this is as good as it gets, they can never get you to normal.

Over the months I made a spreadsheet of my CBC blood counts and achieved kind of a predicable pattern of transfusions. Since April I’ve basically waited around 5 weeks, got a blood test which showed a Hgb count of 8.8, got 2 pints transfused, and waited another 5 weeks. I could easily go into too much detail with this, but that pattern is really important. My RBC deficit was 2 pints per 5 weeks…a consistent baseline. Having a baseline in hand, and looking at a stem cell transplant in the near future I decided to try food supplements to see if my baseline would be affected. The results of my experiment follows.

Short report: My last Hgb count jumped to 9.9 so I only needed 1 pint transfused!

Details….
Here is what I did. This simple little chart will show the timeline and what I started taking. A Hgb of NBT means No Blood Test was performed on that date. This chart starts in April even there is more data prior. I’ve been getting weekly Procrit shots since Feb.
Date, Hgb, supplement started or comment
17-Apr, 8.9, Multivitamin Irregularly
18-May, 8.8, Multivitamin “
19-Jun, 8.9, Miltivitamin “
30-Jun, NBT, Started 1Gm Fishoil, 200Mg CoQ10
26-Jul, 8.8, Same count. Notice 5Wks btwn blood tests!
29-Aug, 8.7, Same count. Another 5 weeks cycle
10-Sep, NBT, Started Poly-MVA 8 tsp/day
10-Sep, NBT, 1Gm Epicor every other day
17-Sep, NBT, Reduced Poly-MVA to 4 tsp/day
25-Sep, NBT, Started Tahitian Noni juice 3 Oz/day
25-Sep, NBT, Doubled Fishoil to 2Gm/day, CoQ10 to 400Mg/day
03-Oct, 9.0, Hgb count up a couple ticks. Yay!
07-Nov, 9.9, I cried after this test result. I only needed 1 pint of blood the day after this CBC test!

Them’s the numbers. I dont really know what to think. I researched these supplements enough to see that they couldn’t hurt me. I figured the worst they could do is lighten my wallet.
My WBC counts, since I have RCMD, have been low, but not too bad; just under normal 4.5 at 4.3. Over the last few months, Platelete counts rose from 95 (low) to start to 200, well within the normal range.
I figure that I was running around a 50% RBC deficit every 5 weeks. IE: My bone marrow was only making 50% of my RBC needs. My last blood test seems to indicate that deficit went down to 25% for the month of October. I feel good, have more energy and the persistent lite cough I’ve had for over a year is almost gone.
As of last week, I’ve increased the Poly-MVA to 6tsp/day. That is no easy decision cuz it costs $3.75/tsp, a $675/month habit. The Noni works out to only about $100/month, the Fishoil (with DHA) is cheap, the CoQ10 a bit more. Epicor is around $.75 for each capsule.
I’m led to believe that both the Poly and Noni can be scaled back to a much more affordable maintenance dose after a few months.
I feel a little sheepish sharing this info here cuz I’m not presenting scientific evidence or anything, just sharing my experiences with a couple food supplements. Maybe the Procrit, which I’ve been taking since Feb is finally kicking in? But why all of a sudden? Procrit, when it works at all is supposed to show results in the first 2 months at the most. I’m inclined not to fight with success. So I’ll keep taking these supplements. I’m thinking the fishoil and CoQ10 may be responsible for my early success when I stretched my transfusions to 5 weeks from 4 on July 26. But, who knows. Take this for what its worth. I’ll keep you all posted if you want. In addition, I’m willing to scan and send anyone all 13 of my CBC blood reports, my bone marrow biopsy report, and doctors notes. Nothing to hide. I don’t know how this story will turn out but I’m gonna find out! Maybe I’ll still have MDS but without the need for transfusions??? I gotta find out! I’ve had 21 pints of blood since January.
Best Regards,
Jim Anderson
San Diego, CA.

[Neil]

Hi Jim,
It appears your “program” is doing well! Keep it up.
Did your doc check your epo and iron levels before starting Procrit. If epo is normal to high procrit might not have much effect. Procrit needs iron to be effective. If iron stores are low a supplement might kick it in gear.
Has your doc discussed Aranesp as an alternative. It lasts a bit longer. Might extend your interval to everyother week.
when I started on Procrit I got a boost in a weeks time really improved my energy level. Keeps my HGB around 11.5 – 11.9. Don’t reach that “magic number” of 12.1

[jga_socal]

Neil,
My doc did not check these levels as far as I know. I had a couple CMP (complete metabolic Panels) done early on this year but I’m not sure if EPO or Iron levels show up in that test. I’ve read that RBC transfusions introduce new iron into your system that builds up over time to cause eventual organ failure. Aranesp is not covered by my insurance. My understanding is that Procrit is the exact same thing as aranesp except must be given weekly.
So you have a platelete problem. Weird how RCMD has such different permutations. My RCMD affects my platelets the least, WB cells a little and RBCs a lot. I guess the med term for my version of RCMD is Pancytopenia; all three cell lines are screwed up to various extents.
I’m beginning to wonder if MDS is caused-by, or at least exacerbated-by poor (stem) cellular nutrition.
Thanx for the encouragement and the info. My next 5 week blood test is Dec 12. I’m looking forward to see if my RBC production improves further, or if last months results were some kind of fluke.
Incidentally, my doc, on Nov 7, was not at all interested in my food supplement usage and hardly made note of the huge jump in my RBC count. I dont know what to think about that.

Jim

[Neil]

Hi Jim,
Not certain if the ferritin increase triggered by TX is the same type of iro Procrit needs to perform. A question for your doc.
Procrit and Aranesp are sligtly different. Procrit is a synthetic erythropoietin where Aranesp is Darbepoietin. They both trigger the marrow to produce red cells—hopefully. As a rule Aranesp lasts longer and has a longer interval between shots.
In my case benzene exposure probably caused my MDS by damaging a chromosome (20q-). Most of my cells are cloning and churn out huge numbers of abnormal RBC, WBC and platelets. They are identified, killed and flushed out through the splen. At the same time there are some normal cells that produce enough RBC (with the help of Aranesp), WBC and platelets to get by. Try to live as healthy an existance as possible and not do anything to damage those remaining cells.
My doc encourages me to do anything that will tend to create a healthy environment. I keep him tuned into any supplements, herbs etc I might be interested in trying.
For what ever reason my HGB dropped from 11’9 1o 10.9 over the last 6 weeks. Am waiting another 3 weeks to see if there is any change .Will be discussing some options with my doc on Dec 7. My counts do tend to flucuate, but this is a bit more than in the past. Still feel ok. Just a slight drop in stamina.

[patti]

Jim,

Welcome to the world of natural medicine. The fish oil and CoQ10 are probably why you’re seeing the RBC increase. Fish Oil or Cod Liver Oil are considered “super foods.” They nourish the body in ways we don’t fully understand. The basic line is they are an Omega 3 fat which is something most people’s diets are largely lacking. In our home and for my MIL we take 2 tbls of Cod Liver Oil daily and it helps both of our health tremendously!

My MIL has been doing natural medicine since the inception of her MDS. I’ll just forewarn you that your doctor isn’t going to get too excited about anything natural you do. You will be lucky if he doesn’t berate you and tell you that nothing you do naturally will work. We’ve been through 4 doctors in just over 2 years and the 4th doctor is the ONLY one who hasn’t told us we’re wasting our money and time treating mom naturally. I guess I just want to prepare you that most docs are ignorant and callous to natural therapies. Sorry to disappoint you with that news. And – you’ll get some flack here also but don’t worry about it. There is a great need to get the natural info out. When I came looking two years ago there was nothing about natural therapy. You can do a forum search for things I’ve posted on naturapathic medicine and also check out Marla’s posts.

Keep at the health stuff! It does make a difference! My MIL practices something called “complimentary medicine” also called Integrative Medicine. It’s a combination of traditional medicine (very minimal) and naturapathic medicine (mostly what she does). Mom is 76 and she’s done very well with this the past two years. She’s not had any infections despite almost no white cells and she has felt pretty well all along. The occassional tiredness when it’s time for a transfusion. Her MDS is now starting to progress and we are continuing the natural treatments as a mode of comfort.

I want to encourage you to find a cancer naturapath as quickly as possible to help you manage supplements, etc. My MIL and I flew by the seat of our pants the first year and we lost precious time at having someone who really knew how to manage blood diseases. I think that lost time gave mom’s MDS a chance to get a good foothold that’s been hard to battle back. If you need a website to look for an ND let me know and I’ll post the link.

All the best,

patti

[Kiwi Ken]

Hi Jim
I also am trying suppliments and herbal medicine, but as of todate they have not increased my RBC.
Keep up the good work and let us know your results over the next 3 to 4 months, will be interesting to see what the changes are.
I think this must be looked at over a longer period of time
Good luck
Ken

[patti]

Jim,

Thought I’d tell you our latest adventure with the chinese medicine. Mom’s TCM doctor told us he thought it would take one year to bring mom’s lowest HGB level to 8. He looks at her HGB prior to a tranfusion to gauge how she is doing (among a number of other things). Today mom hit 8! Although she still needs a tranfusion in terms of HCT, we finally got her low HGB to 8. She held steady at 7.6 (from an original 6) for quite some time. She’s been seeing this guy for 9 months so we were pretty pleased. He actually doesn’t even know yet because we saw him before her CBC. Normally I just post this stuff on Marla’s blog but I thought I’d share it with you since you just posted your experience.

Patti

[jga_socal]

Pattie,
Thanx for the update on your MIL. When it rains it pours for my family. My MIL just passed away Monday. She had a stroke on Oct 12. She spent the last 5 weeks in a convalescent home but there was too much damage done by the stroke. She was 85. My wife and 2 kids were visiting her at the time in Wisconsin. I’ll be flying out for her funeral Saturday. Sigh.
Yes, I’m beginning to think we might have more control than we think over our MDS-induced RBC anemia problems. I’m around half way to my next blood test and I swear I’m getting pinker everywhere; hands, face, gums. When I started the supplements in Sept I hoped beyond all hope just to have the Hgb tick up a couple tenths. But after my Nov 6th results and what I’m observing now I think there is a chance I wont need a transfusion Dec 12. Maybe it’s the Procrit but I hope not. How could Procrit suddenly activate now after not producing results for 8 months? At any rate, if it is the Procrit, then the supplements *must have* activated it. There could be no other explanation. Of course I’m no medical pro so what do I know? All I can be sure of is that I’m turning pink. If you are curious, I posted a 1 page PDF of my blood report spreadsheet at http://www.interanimate.com Dont let the 1 page fool you. This PDF is full of numbers. You will immediately realize how anal I am (and proud of it!). Look at the row labeled ‘HGB Hemoglobin Cnt’ to see the sudden jump in my Hgb on Nov 6. I’m crossing my pink fingers for a repeat Hgb jump on Dec 12.
Take care of your MIL. Make sure she takes her supplements! I know nothing of Chinese medicine except that it involves a lot of big long pins and needles sticking out of ones body. Ouch.
Best Regards,
Jim

[patti]

Jim,

Sorry to hear about your mom. It is a difficult time.

Ha! No worry about anal. I’m there too. We have a notebook that EVERYTHING goes in. Dates, counts, reactions, tests run, supplements taken, naturapath visits, etc. etc. I don’t miss anything.

I understand what you mean about the procrit and the supplements. One of the difficult things with natural medicine is sometimes it can be difficult to tell which ones are working and which ones aren’t and do we dare stop one to see if it’s not working, etc.

Well, I don’t have much control over mom taking her supplements. She lives on her own. She’s just two blocks from us though. She’s very tired of all of the health regimen she’s been doing for the past two years. She isn’t juicing anymore which is very bad. That is such an important part of a healing regimen. But she’s just tired. She spends most of her days working out her diet, taking supplements (or remembering to take them), etc. It’s a lot for her. It’s also important to remember that my MIL has transformed to AML so in some ways she’s dealing with a different ball game now.

Acupuncture isn’t bad. There are some spots that hurt. I had my pinky fingers and toes acupunctured awhile ago and it hurt so bad I about came through the roof! She actually only poked the needles in and then pulled them out. She called it “lancing” the point because it’s so painful. But most acupuncture sites don’t hurt. Mom doesn’t usually feel anything when she gets it done. I think just one time – she had it done on the interior part of her elbow and she said that hurt pretty bad. TCM also uses herbal teas. Mom has a tea with about 20 different herbs in it for the blood, spleen, kidneys, platelets, reds, whites, etc. She drinks it 3-5 times a day.

One thing you might want to really consider adding to your health regimen is juicing daily. If you do a search of this forum there are a couple of topics about juicing that have good information on what to juice and which juicer to use. Very worthwhile. My MIL did a basic liver cleanse juicing daily for a long time. Like I said, she’s wearing down with doing all this stuff but I highly recommend it for making your body healthier.

Better jet. Safe travels as you fly out Saturday.

Patti

p.s. I just looked at your pdf of numbers. I think I would definately recommend a daily juicing.

Juice one red beet, one lemon, one cucumber, mix with 1 tbls olive oil and drink right away.

sources should be organic.

something for you to think about anyway.

[jga_socal]

Hi all. Just checking in with results.

Dec 11 my CBC came in with a Hgb of 9.3. This is not as high as the Nov 6 count of 9.9, but still well above the benchmark of 8.8, which I had been seeing every 5 weeks prior to Oct 2. My last wbc count was 5.3, breaking my previous record of 4.4. 4.5 and above is ‘normal’. My wbcs have fluctuated a bit over the months, but my rbcs had not fluctuated prior to taking the supplements I mentioned above.
So… for those interested, I’ll continue to check back in whenever I get more data. Jan 26 will be the 1st anniversary of my mds dx. Whoopie! I hope to have many more! And I hope you all to have many more of your own mds dx anniversaries!

Merry Christmas!
Our God is merciful, loving and just. He works in ways that we frequently dont understand. Keep your faith. Complete understanding will come in time.
Jim

[Alice S]

Hi Jim
I am following your posts as my mother has just received her 5th EPO injection. NO joy there, in fact she had a transfusion two weeks after the previous one after being able to hold out for 4 to 5 weeks between transfusion. Wonder whether this is normal? Her Doctor had told her to wait till after the injections before starting CoQ10. Yesterday the Doctor told her to start the CoQ10 anyway. God is listening to me because I have been trying to get mom to listen to me in this regard! Also I found another supplement that may help perhaps you may have heard of it? Goji Berries, Wolfberries in the West, they grow in the Far East, especially China. Studies show that they work in the marrow to help stem cells mature etc and help boost all three lines including platelets. The Doctor told Mom to start taking them too! Check it out on the web.

You write that you are now taking 400mg CoQ10, did you decide on this dosage or were you following advice? I also want my Mom to take as high a dosage as possible as I think 30mg as stated on the package is pathetically low. Any help will do. I will also do further searches on the web but your input will help.
Have a Wonderful Christmas and many more New Years!
Alice

[jga_socal]

Alice,
Since I started supps mid September my hemoglobin count has been trending upwards but not uniformly. I’d sure like to know why my rbc deficit went from 50% to 25% Nov 7. Maybe I got blood from a superman in October!? It was a weird spike. My supps intake has not wavered though cuz I want to make this as accurate a pseudo-quasi-scientific experiment as possible. My goal is, of course, to reduce my donated rbc dependence. It’s good to hear you have a doctor who cares about supps. My doc had absolutely no comment when I passed him the list of supps I was taking. I was not ‘prescribed’ the 400mg, it just seemed like a good number; 2 in the am and 2 in the pm. Yesterday I read that one can safely take up to 2100mg CoQ10 per day. I’m going to look into doubling my intake to 800mg. Same with fishoil with DHA; you can almost drown yourself in this stuff safely. CoQ10 is not cheap when you take so much. I get mine from puritan.com. Looking at $10 for 60 softcells. If taking 8 per day thats 240/month = $40. So actually that comes in third in terms of cost for me. polymva is $400/month, noni juice is $100/month.
So, mmmm… Goji Berries? Sounds interesting… looks like they are around 1/2 the price of CoQ10, for 1000mg. I might have to give it a shot.
Nothin to lose.
I got my 86 year old Dad to start taking 200Mg CoQ10/day. He is pretty darn healthy and I want him to stay that way. He may very well out-live me. I’ll post here again after my next CBC Jan 16. Hoping to keep the trend upwards!
Best Regards,
Jim

[Alice S]

Jim
Thanx for the post. Have been checking up more info on Goji berries, look at http://www.gojibook.com. My mother has just started taking it so we’ll see what happens. Here in Sweden, where I live at the moment, they don’t sell the stuff!! Yes and one thought that with the Nobel Prize and all they would be ahead in the race!
Also look at http://www.goji.co.za just for a different perspective. If it’s so much cheaper than CoQ10 then add it to your cocktail.
Here’s hoping we’re on to something!
Good luck for the next CBC.
Alice

[chuckk333]

jga,

Are you aware that there is a study going on by Dr. Raza of the Univ of Mass. on CoQ10. It might be something to look into. I was interested in being a part of the study and went to Mass to check on it. She said I was not a candidtate for the study since I am taking meds for atrial fibulation. She did recomend that I start Vidaza or ‘Dacogen because of my chromosome abnormalities, but has agreed with my hemo doc in Long Beach, CA and with the City of Hope, that if I had CBC every 3 weeks and the counts held, it would be OK for me to do my skiing thing this season, so I am in CO and doing just that.

[jga_socal]

Hi all. This is an update on the topic.
Yesterday I had my 5 week blood test. Today I had my 10:30am mtg with the doc to discuss results. My hemoglobin (hgb) was 10.5! For the first time since my mds dx last January, I got to go home without a transfusion! 5 weeks ago my hgb was 9.3 and I received 2 pints. From experience, each pint boosts my hgb 0.85. So, after the xfused pints my hgb would have been around 11.0. This means that my rbc loss(deficit) was around .5 pints over 5 weeks, in other words, 10%. My WBC rose to 6 from 5.3, well within the normal range.
I’ve been receiving 60k units of Procrit every week. I had made changes to my supplement use. Maybe that helped. After my 9.9-hgb in November I started backing off on a couple vitamins: B6 (50mg/dy), MAnganese (50mg/dy), Ginko (60mg/dy), and saw palmetto berry (1000mg/dy). I guess I didnt think they were relevant. I kept taking 3oz/dy Noni juice, 4tsp/dy polymva, and 1 capsule Epicor. In December my hgb went down to 9.3. I didnt make any changes until a couple weeks ago when I decided, in order to try to get back to the November success, to go back to taking everything I was taking in October, the month leading up to the 9.9. One exception, I doubled the B6 to 100mg/dy (1 in am, 1 in pm). everything Im doing with supplements is on a hunch, as usual. I research on the internet and decided this is what I’ll try. Nothing to lose!
Walking away from the hosp without a transfusion was well worth the effort of taking all those pills and liquids, especially the polymva. polymva tastes like verrrryy salty water with some ‘b’ vitamins thrown in. The Noni juice is not terrible, but nothing you’d want to drink for the enjoyment. Now, the Epicor… I havent had a sinus infection or cold since September when I started all this. I’m tempted to credit Epicor for that. But who knows.
Once again, my Doc was not ‘overly’ impressed with the great numbers. He claims the Procrit is finally kicking in. As I’ve said before, I dont buy that. Procrit is supposed to work within 2 months. That date passed 9 months ago.
I see good numbers on the quantity the 3 stem cell lines. However, the numbers that indicate the underlaying problem have not really changed. With mds, you have a plethora of abnormally large and strange shaped red blood cells in your blood. There is a number on the CBC coded ‘MCV’. This is the average size of your hemoglobin cells. Normal range is 80-97. My numbers over the last seven 5-week timeframes are: 99, 99, 101, 104, 108, 104, 108. So, my guess is that all this supplement usage is having no effect on my status with regards to my mds diagnosis. I’ve seen on this forum what a wide range of manifestations mds can have. It seems like we all have different concerns with the 3 stem cell lines. some have no trouble with reds but are really low on whites. Some have low platelets but normal whites and reds. For my quality of life it’s been low reds that cause the most discomfort. As long as I’m getting good numbers like this I’ll continue on with the supps. If the supps help me avoid chemo and a stem cell transplant then I’ve gotta keep it up.
if any one else wants to experiment with supplements I suggest anything but the polymva cuz its so expensive. The other supps i’m taking are cost manageable, for now. If I’m forced to cut back on one of my supps due to costs, it will be the polymva.
At this point my feeling is that one or more of the supplements, possibly in combination with the Procrit, are responsible for my bone marrow’s new found ability to create viable red blood cells.
I’ll post new numbers again on this topic in 5 weeks.
Best Regards,
Jim

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