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  #1  
Old Thu Oct 18, 2012, 02:35 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
AA & white blood cells - Any experience with alternative methods to raise WBC?

Hi everyone,

I am fighting SAA, and just joined the forums yesterday. I've entered more of my details under the 'Tell Your Story' forum.

In this thread, I'd like to expand further upon my experience with low WBC. In particular, I would really appreciate hearing from anyone:

a) With a similar low WBC post-ATG for SAA (i.e. good response in platelets and red blood, less response in WBC).

b) With experience using alternative treatment (i.e. naturopathic, oriental, etc..) to improve WBC.

I received ATG 3/07/2012. It has been a challenging 7 months, but I'm doing much better now. My remaining large issue is a very low WBC on my weekly CBC. My ANC is usually about 500, my lymphocytes about 350. I receive neupogen weekly.

I live near Denver, Colorado, and I'm treated at the Colorado Blood Cancer Institute (CBCI). My experience at this institution has been excellent. I highly recommend them. But in addition to my treatment at CBCI, I am considering alternative therapy.

Although my WBC is quite low (usually about 1.0), it has shown promise in the following respects:

1) Prior to horse ATG, my lymphocyte count was actually normal (i.e. well above 1000).

2) Prednisone after ATG led my ANC to rise in about 2 weeks from 0 to 630.

3) After the prednisone taper (2 weeks post-ATG), my ANC fell to 100. Neupogen administration began three times a week, and it worked almost immediately, albeit slowly at first.

4) I am on a slow trend to need less neupogen. I used to get neupogen on Friday, and my ANC would be around 500 Monday. In recent tests, my ANC has been near 1000 five days out from neupogen.

5) In July, I caught a fairly bad cold. While fighting the cold, my ANC rose from under 1000 to over 2800 on it's own without neupogen, and I did not need neupogen for about 3 weeks.

6) My bone marrow biopsy last month showed all normal white blood cells. Not enough of them to be sure, but no mutations.

7) Last month, we tried a test where I received neupogen, and then my ANC was tested again within 24 hours. It had risen from ~600 to over 8000! The neupogen even improved my lymphocyte and monocyte counts. My doctor sees this as a very good sign that I have white blood cells ready or near-ready to go in the marrow, but I have a mobilization issue (i.e. an undifferentiated stem cell wouldn't have time to turn into a fully developed neutrophil in the blood within 24 hours).

So in some respects, it seems I am close to surmounting this low WBC problem.

Thank you to everyone who read this long post! I had a lot of information to pass on.

P.S. I considered putting this on the Alternative Treatments forum, but thought AA was the more apt choice, since I appreciate any feedback on my WBC concerns, be it 'alternative' or otherwise!
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.

Last edited by KMac : Thu Oct 18, 2012 at 03:03 PM. Reason: Explain choice of forum
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  #2  
Old Thu Oct 18, 2012, 04:48 PM
glitterandlace glitterandlace is offline
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Join Date: Oct 2011
Location: central, CA
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Try brazil nuts, sweet potatoes, yams, and rose hip.
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  #3  
Old Fri Oct 19, 2012, 02:11 AM
Ellen McDonough Ellen McDonough is offline
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Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 43
CBCI

Hi,
I live in Denver and am a patient at CBCI and have had SAA since 4/2009 --in partial remission.They are excellent!!!Who is your hematologist?I see Dr Jeffrey Matous at the PSL location.Just was curious.
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #4  
Old Fri Oct 19, 2012, 03:17 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
CBCI

Hi Ellen,

It's very nice to hear from another AA patient at CBCI! (though of course I wish very much you didn't have this disease either)

I am also treated at the PSL location. I saw Dr. Matous as well just after ATG. Since then I have also seen Dr. McSweeney a few times, but my main hematologist is Dr. Nash. Pre-ATG, he sat down with me for a couple hours and patiently explained my treatment options. His steady competence working into the night got me through the ATG while I was having bad reactions. And his care has been invaluable to me post-ATG, as I have battled difficult issues and started to improve. I couldn't recommend the man highly enough.

The rest of the team is great too, doctors and nurses both. I've seen the mutual respect between Drs. Matous, McSweeney, and Nash, as they've thoughtfully read what one another has written about my condition in my charts. One patient I met at PSL, who is doing well 8 years post BMT for leukemia, said he felt with CBCI he's been able to get a 1st opinion, 2nd opinion, and 3rd opinion - all under 1 roof. And in addition, I understand they often consult with doctors at Fred Hutchinson in Seattle (many of them used to work there).

I am not sure why PSL/CBCI isn't shown on the Centers of Excellence map for treatment. Seems to me they certainly should be. I think the map should be updated.

Anyway, it is nice to hear from you. My email is kevin_mcnamar@yahoo.com if you'd ever like to contact me directly.

P.S. I hope your headaches, tinnitus, and gastroparesis are on the mend, and that your Cyclosporine wean is going well.
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.

Last edited by KMac : Fri Oct 19, 2012 at 03:19 PM. Reason: add P.S.
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  #5  
Old Sat Oct 20, 2012, 01:56 AM
Ellen McDonough Ellen McDonough is offline
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Join Date: Sep 2011
Location: United States,Denver,Colorado
Posts: 43
Hi Kevin,
I sent an email to you.Hopefully you got it.
How cool to find another aplastic anemia survivor on an international website that sees the same hematologist at CBCI!!!!I couldn't agree more that all the doctors there are very excellent .They have all trained at Hutchinson Center and are closely affiliated with Hutchinson Center.
To have survived severe aplastic anemia is quite a journey we have all traveled - surviving this disease and to be able to connect through this website is such a miracle of technology!I for one am very grateful to have found this website!
It helps to share each of our experiences.Our families as well.
Good luck and hope to hear from you.--Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #6  
Old Tue Oct 23, 2012, 12:17 PM
chriswg chriswg is offline
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Join Date: Jul 2012
Posts: 17
Hi Kevin

I'm always worried about giving advice incase I'm completely wrong but as we are talking alternative therapies I guess there is no harm.

I was given the advice here of trying to increase copper levels by eating copper rich food. There are links between low WBC and low copper so I would assume increasing this would be a good thing. Here is a great link of some examples.

http://www.whfoods.com/genpage.php?t...trient&dbid=53

If your haematologist hasn't requested a copper test yet I'd recommend you ask them to do one. It was normal in my wife's case but if it's a bit low it could be slowing your neutrophil development.

If it doesn't work at least sesame seeds and sunflower seeds are yummy

Hope this helps.

Chris
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  #7  
Old Fri Nov 23, 2012, 06:59 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi everyone,

Thanks for the responses on raising WBC.

I have decided to be very conservative about this, and try only one new thing at a time. That way, maybe I can identify a specific agent that works for me.

Chris, thanks for the response on copper. I have not had my levels tested, but I have commonly ate the items on that list, and will continue to do so.

GlitterAndLace, I decided to start with your recommendation of rose hips. I also found a fair amount of information indicating it could improve the immune system. For the past 3 weeks, I have been taking a 500 mg Vitamin C supplement with rose hips daily. This has corresponded exactly with not needing any neupogen shots since then. I get neupogen when my ANC is below 750, and usually I need it once a week. In the past 3 weekly doctors visits, my ANC has been at 930, 1070, and 750. I came close to needing a shot this past week, but my other lines of white blood started to rise without neupogen for the first time this past week - so hopefully the neutrophils will be up next week as well.

Now of course, this correlation with Vitamin C/rose hips could be a coincidence. I am a sample set of just one, so I will never know for sure with any statistical certainty. But I am just glad to see the WBC improvement, and plan to continue the supplement.

Kevin

P.S. Very happy to report my other counts continue to improve as well. Hgb up to 11.9, platelets now normal at 174. And I apparently no longer have iron overload (serum ferratin down to about 250 from a high of over 4000). I am still often quite tired and get headaches, but with my response I consider myself very lucky. Life is seeping back into me!
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #8  
Old Wed Feb 13, 2013, 10:32 PM
LoveRapheal1 LoveRapheal1 is offline
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Join Date: Dec 2012
Location: New York
Posts: 54
Opinions on Neupogen Shots Anyone?

It's wonderful that this treatment is working for you. My doctor told me that he doesn't want me on Neupogen shots. I hear that they are costly and that they only last two weeks. They seem to raise your cells and then they drop. The doctor said it would be better to let the bone marrow work on it's own. That is my case though. This is what I have heard from my doctor. I wonder what anyone elses' experience with Neupogen shots has been like?
Quote:
Originally Posted by KMac View Post
Hi everyone,

I am fighting SAA, and just joined the forums yesterday. I've entered more of my details under the 'Tell Your Story' forum.

In this thread, I'd like to expand further upon my experience with low WBC. In particular, I would really appreciate hearing from anyone:

a) With a similar low WBC post-ATG for SAA (i.e. good response in platelets and red blood, less response in WBC).

b) With experience using alternative treatment (i.e. naturopathic, oriental, etc..) to improve WBC.

I received ATG 3/07/2012. It has been a challenging 7 months, but I'm doing much better now. My remaining large issue is a very low WBC on my weekly CBC. My ANC is usually about 500, my lymphocytes about 350. I receive neupogen weekly.

I live near Denver, Colorado, and I'm treated at the Colorado Blood Cancer Institute (CBCI). My experience at this institution has been excellent. I highly recommend them. But in addition to my treatment at CBCI, I am considering alternative therapy.

Although my WBC is quite low (usually about 1.0), it has shown promise in the following respects:

1) Prior to horse ATG, my lymphocyte count was actually normal (i.e. well above 1000).

2) Prednisone after ATG led my ANC to rise in about 2 weeks from 0 to 630.

3) After the prednisone taper (2 weeks post-ATG), my ANC fell to 100. Neupogen administration began three times a week, and it worked almost immediately, albeit slowly at first.

4) I am on a slow trend to need less neupogen. I used to get neupogen on Friday, and my ANC would be around 500 Monday. In recent tests, my ANC has been near 1000 five days out from neupogen.

5) In July, I caught a fairly bad cold. While fighting the cold, my ANC rose from under 1000 to over 2800 on it's own without neupogen, and I did not need neupogen for about 3 weeks.

6) My bone marrow biopsy last month showed all normal white blood cells. Not enough of them to be sure, but no mutations.

7) Last month, we tried a test where I received neupogen, and then my ANC was tested again within 24 hours. It had risen from ~600 to over 8000! The neupogen even improved my lymphocyte and monocyte counts. My doctor sees this as a very good sign that I have white blood cells ready or near-ready to go in the marrow, but I have a mobilization issue (i.e. an undifferentiated stem cell wouldn't have time to turn into a fully developed neutrophil in the blood within 24 hours).

So in some respects, it seems I am close to surmounting this low WBC problem.

Thank you to everyone who read this long post! I had a lot of information to pass on.

P.S. I considered putting this on the Alternative Treatments forum, but thought AA was the more apt choice, since I appreciate any feedback on my WBC concerns, be it 'alternative' or otherwise!
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  #9  
Old Fri Feb 15, 2013, 10:07 PM
LoveRapheal1 LoveRapheal1 is offline
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Join Date: Dec 2012
Location: New York
Posts: 54
Alternative Therapy

I just read a book on alternative therapy. You must be careful. There are herbs that can help but they can also interact poorly with other meds such as cyclosporine or birth control. I would consult your doctor before taking any herbs. I wanted to follow a holistic method but I am still recovering from this ATG treatment. I read that certain herbs also increase the dangers of graft host rejection if deciding for a transplant. I decided to order the book and research holistic and alternative therapies to use after all treatment has failed. I do not think I will try any of the herbs. There are many herbs that you can take. I did find an interesting juice method in the book that I ordered online. The book is called Conquer Low Platelets. It costs 45 dollars but it is highly worth it. It gives you a list of herbs that actually work to cure the root of the problem in the immune system instead of suppressing the immune system. It is an excellent book and worth it. You will find meds, herbs and a juice diet to increase your platelets. Go to ConquerLowPlatlets.com. I found foods, juice diets, regimes and herbs that all work to cure the immune system which is usually caused by dysfunction in the liver or digestive system. I am going to purchase some vegetables to create a juice diet to increase my platelets ASAP. Check it out if you can and let me know what happens and how it works for you.


Quote:
Originally Posted by KMac View Post
Hi everyone,

I am fighting SAA, and just joined the forums yesterday. I've entered more of my details under the 'Tell Your Story' forum.

In this thread, I'd like to expand further upon my experience with low WBC. In particular, I would really appreciate hearing from anyone:

a) With a similar low WBC post-ATG for SAA (i.e. good response in platelets and red blood, less response in WBC).

b) With experience using alternative treatment (i.e. naturopathic, oriental, etc..) to improve WBC.

I received ATG 3/07/2012. It has been a challenging 7 months, but I'm doing much better now. My remaining large issue is a very low WBC on my weekly CBC. My ANC is usually about 500, my lymphocytes about 350. I receive neupogen weekly.

I live near Denver, Colorado, and I'm treated at the Colorado Blood Cancer Institute (CBCI). My experience at this institution has been excellent. I highly recommend them. But in addition to my treatment at CBCI, I am considering alternative therapy.

Although my WBC is quite low (usually about 1.0), it has shown promise in the following respects:

1) Prior to horse ATG, my lymphocyte count was actually normal (i.e. well above 1000).

2) Prednisone after ATG led my ANC to rise in about 2 weeks from 0 to 630.

3) After the prednisone taper (2 weeks post-ATG), my ANC fell to 100. Neupogen administration began three times a week, and it worked almost immediately, albeit slowly at first.

4) I am on a slow trend to need less neupogen. I used to get neupogen on Friday, and my ANC would be around 500 Monday. In recent tests, my ANC has been near 1000 five days out from neupogen.

5) In July, I caught a fairly bad cold. While fighting the cold, my ANC rose from under 1000 to over 2800 on it's own without neupogen, and I did not need neupogen for about 3 weeks.

6) My bone marrow biopsy last month showed all normal white blood cells. Not enough of them to be sure, but no mutations.

7) Last month, we tried a test where I received neupogen, and then my ANC was tested again within 24 hours. It had risen from ~600 to over 8000! The neupogen even improved my lymphocyte and monocyte counts. My doctor sees this as a very good sign that I have white blood cells ready or near-ready to go in the marrow, but I have a mobilization issue (i.e. an undifferentiated stem cell wouldn't have time to turn into a fully developed neutrophil in the blood within 24 hours).

So in some respects, it seems I am close to surmounting this low WBC problem.

Thank you to everyone who read this long post! I had a lot of information to pass on.

P.S. I considered putting this on the Alternative Treatments forum, but thought AA was the more apt choice, since I appreciate any feedback on my WBC concerns, be it 'alternative' or otherwise!
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