MDS treatment without Chemo? Anyone? Increasing platelets naturally?

[Greentea]

Hello lovely people,

A bit of a long story..

My sister was diagnosed in 1990 with Severe Aplastic Anaemia (aged 7).. no one was a match for a BMT.. 4 rounds of ALG later and bone marrow started working again miraculously.

Fast forward 25 years.. Routine blood test showed low platelets (33). Sent for bone marrow biopsy etc.

Doctors want to treat with a stem cell transplant but my sister has heart valve issues due to the drugs used when she was a child and doesn't think she will be strong enough to endure the chemo.

She is currently treating herself with high doses of vitamin C.. infusions too. Juicing beetroot etc.. cut out all inflammatory foods out of diet.

Has anyone had any luck treating MDS without chemotherapy or getting platelets levels to go up naturally?

She presented at the hospital for a transfusion and was refused based on her levels (33) being 'ok'???

My family and I are very frustrated at the lack of care being displayed by Sydney doctors at this point in time. No one seems to want to treat her holistically.. as in taking all risk factors into account. They all seem very quick to jump on the chemo bandwagon??

Any advice would be appreciated. We are open to travelling abroad for treatment.

Thanking you all in advance

[Neil Cuadra]

Greentea,

I'm sorry your sister has relapsed after all these years. I hope your family can identify the choices you have and decide which is best.

Did the doctors specifically say that your sister is strong enough for a transplant despite her heart valve issue? If so, what makes her think she knows better? If they haven't addressed that concern, they need to consider it now and give her straight answers about the chance for success based on her individual circumstances.

Has she talked to the doctors about the possibility of doing anti-lymphocyte globulin (ALG) treatment again? She's older now, and children as a group are the best responders to treatment, but it can work for adult relapses too.

I'm surprised that she couldn't get a transfusion with her platelets so low. If it was a hospital department that refused her, then she may just need orders from the doctor to the transfusion department.

It's not unusual to find that hospitals or physicians recommend immunosuppressive treatment or a stem cell transplant. That's what their research tells them can work. Few institutions offer holistic treatment services, in part because these approaches are harder to test rigorously and because of a lack of sponsors for such research. There are exceptions, like the Complementary and Alternative therapy program at the Cleveland Clinic here in the U.S. I don't know what's available in Sydney.

Before you consider traveling far and wide, I suggest trying to get better answers from your sister's doctor(s), or seeking a second opinion locally.

Good doctor-patient communication is very important but not always easy to arrange. Doctors can misunderstand patients just as easily as patients can misunderstand doctors. It can help if you outline specific questions that get to the heard of the matter, and bring a written list to the next appointment. If doctors make a treatment recommendation, have them tell you why. If they don't mention an approach or don't recommend it (e.g., ALG or diet changes), have them tell you why.

Finally, is your sister talking to a hematologist with aplastic anemia expertise? You want the more knowledgeable doctor you can find for this disease.

[Greentea]

Hi Neil,

Thank you for posting a response. I really appreciate the reply.

You bring up lots of good points.. We need to be more pragmatic with our approach. Having a list with specific concerns and getting them addressed is definitely the way to go! Thank you.

The difficulty has been getting a reputable specialist to see my sister. She was seeing a haematologist who wasn't very helpful to say the least... not upfront with results, vague etc.

A second opinion has been sought with similar treatment options but as far as I'm aware.. the concerns about surviving chemotherapy haven't been addressed, she has however been referred to a cardiologist.

I guess the difficulty is knowing treatment must start very soon, and we are all in a bit of a panic to ensure she is going to receive the right care.

I didn't know ALG can be used again. I'll let her know to ask her new doctor and I will be on the hunt for an aplastic anemia experienced haematologist in the meantime.

It may very well be that someone else needs to be in the appointments with her to ensure these issues get addressed and to write everything down.

You are right, we need to get some good communication happening!

Thanks again for your help

[Chirley]

The centre I used to go to had a policy ...no platelet transfusion above 30 unless actively bleeding.

I found there is also a lot of differences between doctors/institutions. One doctor refused a blood transfusion with HB of 56....next doctor came in and ordered 3 units of blood.....

You have to learn to speak out and advocate for yourself and let the doctor know if your not comfortable leaving the count sit at 33 and ask them to explain their reasons for not transfusing. They might have very valid reasons.

Good luck and I hope you find what you're searching for....

[Cheryl C]

Until we moved up the coast to Wangi Wangi I was seeing a haematologist by the name of Jane Freeman at the Sydney Adventist Hospital. I found her excellent. From the start I told her that I wanted to be thoroughly informed, no matter what, and she did that in a kind and gentle way. When I was going to have a transplant, she referred me to Dr William Stevenson at Royal North Shore Hospital. At first meeting he can appear to be abrupt, but he is totally honest, and we really appreciated that.

Has your sister had her Vitamin D3 levels checked? There is some evidence that D3 supplementation can boost platelet levels. It seems to do so for me since when I stop taking it they seem to drop about 20 points. See http://www.mdsbeacon.com/news/2010/0...-mds-patients/

[Greentea]

Thanks Chirley, Yes they did mention something about no active bleeding..

We are learning to be a bit more outspoken and like you said, advocate for yourself.. unfortunately asking questions seems to upset some health professionals!!

[Greentea]

Thank you Cheryl - I'm glad you had a good experience with Dr Freeman and Dr Stevenson.

My sister is currently on D3 supplements but I'm not sure what her levels are

Thanks for the link too.

I've also read that vitamin K supplements can increase platelets too

[Cris L.]

Hi, this is Cris a cousin of a 10yrs od kid currently confined in Koronodal Provincial Hospital w/ Aplastic Anemia diagnosed just a month ago. She was confined twice w/in this month. The first confinement was when she suffered bleeding in her nose and luckily been discharged after a week. After a week of staying at home, She again been confined due to hard stomach ache. Knowing that a symptom of this illness was a horrible bleeding, are we to worry of the hard ache she felt on her stomach??
Looking forward for your best answer, suggestions and advises. Thank you!

[Neil Cuadra]

Originally Posted by Cris L.

Hi, this is Cris a cousin of a 10yrs od kid currently confined in Koronodal Provincial Hospital w/ Aplastic Anemia diagnosed just a month ago. She was confined twice w/in this month. The first confinement was when she suffered bleeding in her nose and luckily been discharged after a week. After a week of staying at home, She again been confined due to hard stomach ache. Knowing that a symptom of this illness was a horrible bleeding, are we to worry of the hard ache she felt on her stomach??
Looking forward for your best answer, suggestions and advises. Thank you!

Please look here.

[Hopeful]

Hi Greentea,

You are receiving a lot of good advice here. I just wanted to chime in that while a platelet count of 33 is low in the normal world, in the MDS/AA world, in the absence of bleeding, it would be considered okay. My doctors wouldn't consider a transfusion unless my platelets dropped below 12k, in the absence of bleeding.

Platelets only last 5-7 days, and a person can become refractory to platelet transfusions at any time. So, getting them more frequently than necessary is discouraged.

Best of luck to you and your sister!

[bailie]

They wouldn't give me a transfusion until below 10 and that happened once a day after transplant.

[Fana]

My son's transplant team wanted to have less transfusions as possible before the transplant so they didn't trasnfus even when his platelets where 9 we where worried at the time but it all worked out well

[Greentea]

Thanks for your advice Hopeful, it is a mental adjustment to not 'freak out' at such levels

We are all just a bit cautious about platelets I guess because my sister sustained retinal haemorrhaging which lead to pretty serious visual impairment after contracting a vomiting bug all those years ago. Being a child at the time too I am not even sure what her levels were to compare to now... No one knew to keep her in an isolation ward back then either..

I didn't know about the refractory issue so thank you for letting me know about that too

[beverly]

Is anyone using FUCOIDAN? Would like some input. Thanks Beverly

[Bossywife]

Greentea,

When my husband was first diagnosed MDS RAEB-II, I did some research and immediately started him on B vitamins, Folic Acid and Cod Liver Oil. I also banished Aspartame and Alcohol (he's not a big drinker anyhow) from his diet and his numbers leveled out. We noticed that around Christmas his WBC & RBC and a few others get out of whack, we attribute it to drinking a bit of alcohol and eating more sugar than usual.

I am currently looking at Tumeric and Cannabis oil for him.

[bailie]

Bossywife, I apologize that I can't remember your husband's total experience. From everything (studies) I have followed is that Vidaza (or Dacogen) and perhaps a combination with lenalidomide followed by a stem cell transplant are the only paths of treatment that have quality results for RAEB II. What have your husband's doctors suggested about this path? I have always been prescribed Vitamins D and B12, but these are nothing that will turn around genetic mutations. The "extra stuff" just helps in general health support.

[Bossywife]

We are just on watch and wait because he is still playing hockey and working. When I look at the graph I built from 2008 until now, his numbers were historically all over the map. WBC low then high, RBC low then high, Platelets always low... UNTIL after I started him on the vitamins (and wheat grass) and nixed booze and aspartame, everything leveled out with just his platelets being low (except at xmas).

Keep in mind that he is also a Diabetic (type 2). So anyone who is on Metformin should automatically be on Folic Acid and B vitamins. We had never been told that.. I discovered it on my own.

We were told treatment is not an option because he is doing so well. Hockey starts again in a few weeks, if he finds he can't play because he's too tired / sore, then we'll be pushing the specialist.

[AussieDavid]

In 1989 platelets were less than 10 and multiple transfusions before experimental treatment with Equine ATGAM. It worked and hospital sent me home with platelet count of 12. I continued to work hard, some 16 hour days, travelling and physical work and it was May 2014 before count was up to 146. This was the day that I found out that I had MM(MGUS), MDS, Vasculitis, peripheral neuropathy and kidney damage. When I get up and ignore the pain and keep going, the counts seem to increase.
Non drinker, non smoker and no illicit drugs. Clean hard life, but now I have discarded the massive pain tablets.
So this week, feeling crap and buckled over, but platelets 135, Hemoglobin 98 and Neutrophils are 2. I tried vitamin C in 1994 and ended up being medevac'd in Korea to Hong Kong with Kidney stones, so be careful.
Hematologist suggested that transfusions only with neutrophils <0.5, platelets <40, and red cell less than 70.
always arrange copies of your blood tests and have accurate medication list that you revise and control. FYI: ATGAM has been approved for Aplastic Anemia (Nov 2015) in Australia.