New Diagnosis – Questions for Doctor?

[Rok Gerl]

Hello,

My dad recently received a call from the haematologist after having a bone marrow biopsy and was told that he is being diagnosed with MDS. The doctor didn’t say much (or maybe my dad doesn’t really remember much because of shock) aside from the fact that my dad is anemic and that he was low risk. When asked if he needed to make an appointment the doctor said he would be in touch after the holidays. In the meantime my dad is obviously very worried. He meets with his family doctor on January 2nd to go over his bone marrow biopsy results and get more information. I’m wondering if anyone might be able to suggest other questions that my dad can ask at this appointment (or a subsequent one when he meets with the haematologist). Anything he should be asking for?

As a second question, I’m wondering about centres of excellence. I have noticed that people suggest getting in touch with an expert in the field. Is there a self referral process or does my dads doctor have to do this for him? Unfortunately he does not have a centre nearby (the closest is in British Columbia) however he has decided to take a sick leave from work as he manages the news and upcoming journey so he will have the time to head to a clinic when and if he is able to get a referral.

Thanks to everyone in advance for all of the help.

[Marie Yeager]

Good Morning Rok,
I completely understand what you and your Dad are feeling right now. We had a very similar experience 3 years ago with my husband. Doctor called on Christmas Eve to tell us he very likely had MDS, but offered no additional information except to say he would be scheduled for a bone marrow biopsy. We spent the next 3 weeks reading about MDS and being in an absolute panic, thinking he only had a year or two to live. It still makes me furious that the doctor was so completely insensitive. My husband is also Low Risk and anemic. There is a wide range of MDS karyotypes – some are deadly and some are quite manageable with much longer life expectancies. When we went to the Center of Excellence, the doctor told us his heart stent was a bigger concern than his MDS.

The fact that he knows he is Low Risk MDS is good news. In the MDS world, that is very good news. His local family doc will likely not know a lot about this disease as it is an ever evolving area with lots of new information in recent years. “Low Risk” means he is at low risk of progressing to Acute Myeloid Leukemia (AML). It is very important to understand which mutations are present in his marrow and only a trained hematologist who specializes in MDS can fully understand the implications of each mutation. (Some are not nearly as concerning as others). If you can get a consult at a Center of Excellence, they can at least set a course for his treatment that is most effective for his mutations. These treatments can then be administered locally. He can then go back for check ins from time to time. He will likely start receiving Aranesp injections every 3 weeks to boost his Hemoglobin levels.

One thing I would strongly suggest – your Dad will need an advocate to go with him to appointments and advocate on his behalf. This is a very complex and physically challenging disease. It is tough to wrap your head around all of the information and think about all of the right questions to ask when you are anemic and not feeling your best.

Questions to ask:
What mutations are present in his bone marrow? (What are his karyotypes)
What does each mutation mean as far as affecting his longterm outcome?
How low is his Hemoglobin level?
Can he be referred to a Center of Excellence for a consultation? (if a referral is needed. If not, just call and ask for an appointment).
What is the least aggressive treatment plan that can boost his hemoglobin and get him feeling better?
Is there anything you can start doing immediately to help boost his Hgb? (i.e taking B12 vitamins)

Once you have all of that information, you will be able to get a lot more feedback!
Hopefully your Dad can start feeling a bit better and get some energy back soon.
I hope this helps. The MDS community is a very supportive one.
Hugs to you and your family,
Marie

[Rok Gerl]

Hi Marie,

Thank you very much for the thorough reply. Like you, we are all very disappointed at how the doctor chose to inform my dad along with the timing (and then made it sound as though it wasn’t overly imminent when my dad asked when he should meet with the specialist). I understand that a physician does have to distance themselves a bit when having to hand out news such as this but still…

These are all great questions that I will pass on to my dad. I agree, I don’t know how knowledgable the family doctor will be but I’m glad that my dad will be able to meet with someone and advocate for a referral to a Center of Excellence as well. I looked online here as well and noticed that we can put in a query for an appointment as well so I think I will do that (despite my dad saying to wait…I’m not really interested in waiting just because the healthcare system is so inundated in Canada. My thought is, the sooner, the better). My mom will be able to accompany him to his appointment but I worry how helpful she will be (sometimes she can be a bit of a disaster with this sort of stuff). Sadly, both my sister and I live 8 hours away and so I’m not sure how many times we will be able to go with to help, but I would like to be able to when I can.

If you think of anything else, please let me know! This post has just been so helpful and I really appreciate you taking the time to reply.

[Robert Sepe]

Hi Marie:

I’m 81 and newly diagnosed with MPS/MPN and know the trauma your dad is experiencing.

I decided to avoid the “traditional” treatment because it ravages an old body and may render me blood transfusion dependent. I chose not to live the next 10 years like someone on weekly dialysis and decided to find my own solution. At diagnosis (November 23) my hemoglobin was 10.1 and today (Jan 6, 24) it is 13.1 . Accomplished without pharmaceutics.

A level of ~14 is “normal,” 16 is better. I’ve returned to my normal activities. The body lacks sufficient red blood cells, despite those cells being fully oxygenated, they are not able to service my body’s muscles and organs. My symptoms were extreme fatigue, shortness of breath, chest tightness, stomach discomfort/pain and irregular heart beat.

I discovered my “illness” on a long transcontinental flight where I suffered altitude hypoxia. I was slowly suffocating due to oxygen depravation. The plane landed and I struggled to depart the Jetway. In the lounge, I was able to catch my breath and depart the airport. I spent the next 7 months pursuing a diagnosis. Only upon consulting a hematological oncologist was I able to uncover my problem.

At a minimum, your dad should not consider an airplane trip, unless it is under an hour or two, especially if his hemoglobin is <=10.0. At present, I fly as long as the “in-air time” is less than 75 minutes. Airplane cabins are pressurized to a level equivalent to ~2500 meters above sea level. That’s okay for a person who is not extremely anemic, but it didn’t work for me.

I’m not a physician, just a old guy with a Ph.D. As such I don’t offer medical advice. I can only tell you my story.

Any further discussion, I prefer off line. I’m at: rfsepe@gmail.com

[Ashley Moncrief]

Hello,

Just wanted to pop in to share our Visit Discussion Guide. I put the link below. Also, if you need help getting set up at a Center of Excellence, feel free to reach out to me a amoncrief@mds-foundation.org or give me a call at 1-800-637-0839 ext. 210. Happy to help!

Home Demo

[lisab]

Hi Rok

I’m a low risk MDS patient and have been for 4 years. I’m an Ontario resident and am being treated at the London Regional Cancer Program. I have done very well. My hemoglobin is in the normal range and I am able to do most of the things I did before in moderation. Although it isn’t a centre of excellence (closest one is Princess Margaret in Toronto) I’ve done well. My hematologist is great. He is caring and helpful. Always willing to answer my questions.
My point is that you don’t necessarily need a centre of excellence to be treated. Last I looked there are 2 in Canada, Vancouver and Toronto.
Best wishes to you and your family!
Lisab

[Robert Sepe]

He’s right … center of excellence is is like a 4 star Michelin restaurant rating… it does not mean quality food and service cannot be found elsewhere.

Key to successful MDS management is a bond between yourself and the hemo-oncologist. And it requires the patient to be knowledgeable about protocols and treatment options so as to foster an intelligent conversation between patient and practitioner. Above all, medicine is an art because genetics vary greatly between individuals.
Secondly, nutrition is absolutely critical. Supplements? Use extreme caution in their selection because you do not want to feed the weeds. Master gardeners, weed before applying fertilizer. Human body is no different.

[lisab]

Thanks Robert
My doctor and I work well together. Along with the rest of the team at LRCP in London Ontario. My doctor has tried to give me credit for my outcome but it is a team effort. I do what my doctor says and have taken advise from pharmacists and nurses as well.
Everyone is different though and what works for me may not work for others.
Best advise I give people is to be positive. Outlook plays a roll in it as well.
Lisab

[Robert Sepe]

Update…. it’s been 5 months and my hemoglobin is now 15.0…. started at 10… thats when I , dropped to 8 and am now 15.0

Accomplished without meds… no transfusions… no liver or kidney damage.. etc.

I can walk 3+ miles. Fix my car, climb stairs, eat without sleeping afterward.

My oncologists are goobersmacked…and shake their heads in disbelief.

The curious, and those seeking non traditional solution, I’m at: rfsepe@gmail.com

[Rok Gerl]

Thank you everyone for the replies. I’m sorry that I missed them!

My dad has been going for routine bloodwork without need for medication or intervention however got some bad news the other day and has had his hemoglobin drop to 7 from 10 in the last two months. The have mentioned that he likely will be needing medication and transfusions…his ferritin is through the roof (over 2000 when the reference range is 30-300)…I’m assuming that is what the medication is for but he has yet to touch base with his doctor (it happens this Tuesday).

Robert, I’d be very interested in hearing what you have to say! Results like that are so encouraging. I agree with you on your holistic approach and would love to hear more!

• This reply was modified 2 months, 1 week ago by Rok Gerl.

[Janet]

Rck Gerl – a hemoglobin level of 7 is very serious. The doctor should have addressed the low reading when it happened. I am hoping that Tuesday means today! Low hemoglobin can cause problems with organs including the heart. I would hate to hear that he had a Cardiac arrest.

[Robert Sepe]

I can tell you that I’ve raised my Hg level from around 8 (est) to 12.1 as olf today in 11 months. It has been above 10 for several months.. I am not taking ANY pharmaseutials nor transfusions. Zero.. nada!

I played two rounds of golf this week. I can walk a mile or two. The highest my Hg has been is 13.9..a few weeks ago

I will share my strategy, but not in a public forum.

If interested phone 919.417.5019…. anytime I’m on east coast of the USA.

The protocol is the result of my own research.

BTW, I helped a pilot pass his physical by boosting his Hg from 8 to 11. Cannot be certified to fly a plane with a Hg less than 9.

Bob

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