Father has just been diagnosed. Needing some suport.

[Jeanette B]

My father was diagnosed about 6 weeks ago with MDS and RAEB kind but I am not sure whether it is 1 or 2, with a platelet reading in the low 70’s. My parents were floored in the specialist’s office and without prior info, were unable to ask the need to know questions. They live in Sydney, Australia and I am half a world away in the U.S. feeling very helpless and frustrated. He is not symptomatic just yet but yesterday’s blood tests showed a platelet reading in the 50’s. He is off in a day or so to the specialist about this and I am waiting on the outcome. I guess what I am really after is some kind of idea of what we are in for, how bad the platelet reading is and what time frame we can expect or hope for. Any thoughts would be greatly appreciated.

[Kensyen]

Get your father into a Centre of Excellence. You may want your father’s physician to fax his particulars for review to Stong Memorial Cancer Centre in Rochester, NY, they are the top notch facility and the top researcher, Dr. John Bennett also sits on the board of Celgene ( Revlimid).
Thankfully Australia has an Orphan Drug Program, I wish Canada did, at least he is accessible to more drugs.

Good Luck,

Wendy

[jaxem]

jeanette
welcome to the Forum. Since he is diagnosed with RAEB, 5-10%blasts constitute a -1 & 10-20% is a -2. blasts are infantile white cells that develop in the blood & die off fairly quickly. as blasts %age gets higher, they tend to take up more of the blood not allowing good cells to develop. Typically, patients do an induction chemo round followed by a consolidation round to try to do away with the blasts which is called remission. depending upon your father’s age, he may opt to go for a “cure” which is to replace his blood marrow with stem cells from a donor. rounds of chemo can be tough as they are toxic & may cause body damage. come back with more questions.

[Jeanette B]

Jack & Wendy,
Thanks so much for replying to me. Like I said before I am feeling frustrated being on the other side of the world as I can’t be with them when they see the specialist and ask the questions. So far they have been told that there is nothing that can be done for him by the specialist but I am not sure if that was meant as “no cure” or “no life sustaining treatment”. That seems a bit drastic to me in that he was originally diagnosed by a regular check up blood work and has no symptoms. As I am not sure just yet what the blast % is, I don’t know exactly what we are dealing with.
In answer to your question Jack, my Dad is 76 and in reasonable health for his age. He had a heart attack in his early 50’s and has been on heart medication ever since and probably could lose a few pounds but other than that he has been fine.
Do either of you guys know whether the platelet reading in the 50’s is bad and if it is bad that it dropped from 70’s to 50’s in 2 months? Also I realise every case is different but what time frames, best and worst case, are we up against?
Wendy, I thank you for your referral to the NY people. My parents will be hard pressed to get them to seek assistance beyond the guy that they are working with and as you can see by my comments above, I don’t think he will either, I will try though. My Mum doesn’t drive and they will have to rely on neighbors to drive them to the hospital when my Dad can’t anymore, so they will be reluctant to go out of their area. I will going back there for a visit in early November so maybe I will be able to make things happen whilst I am there.

Thanks again guys, you have no idea how grateful I am to be able to talk to people who know how I am feeling right now and may be able to ease my anxiety and answer the odd question.

[Kensyen]

Hi Jeanette

I certainly relate to your frustration. When my father was first diagnosed with MDS we proceeded immediately with a “game plan”, we were quickly told that “Mr.Talbot you are 73 years old, you have lived your life, just deal with the cards you have been dealt.” No Kidding.. nice bedside manner, this Doctor, who calls himself a Specialist should have had his medical licence revoked. We then went to Toronto, my father’s prospects instantly looked brighter, what was a dim forecast (18 months) turned into 7 years of life, with 6 being good quality.
After becoming heavily involved with MDS, I have learned through conferences that I attended there are 2 types of Doctors, ones that are researchers and others that MAY read what the others have reasearched., that is why I thought you should seek advice through Strong Cancer Center. These people are dedicated, they are not worried about HMO etc.. they genuinely are empassioned and want to help and find a cure, they do not consider themselves Specialists but rather researchers ( big difference, one wants to “maintain” the patient, the other wants to find a cure…). These people will guide your parents Physician through treatments if they cannot make it to a MDS doctor, they are up on the latest drugs etc..Many physicians would not have dealt with many if any people with MDS, your father needs specific care, in my opinion this would be the best way to obtain it.

[Jeanette B]

Wendy,
Even though it is early days and I haven’t been privy to the conversations in the past, it is starting to sound like your encounter with the first doctor may be what my folks are going to be faced with. I will just have see the outcome of the next couple of days when they go back to see the specialist. By the way what specialty was the doctor that your Dad saw? Mine are seeing a Hematologist. I have also checked out the Centre of Exellence list and have found one in Melbourne, Australia that we might be able to get some help from. I think when I go back there in Novemeber I will see if I can get the ball rolling, so hard dealing over the phone, especially whilst emotions in both camps are at such a level. I really appreciate your help and you sharing your experience.

[LynnI]

I’ll second the opinion to seek a Centre of Excellance, as I know everyone here fighting this damned disease or has loved ones figthing it will agree.
My experience with the local Hemotologist was also not pleasant nor was he correct in his dx of me.
My experiences with a Centre of Excellance since then have been positive and successful. I agree that they are extremely compassionate and humble.
Good luck
Lynn

[billboy]

Hi Jeanette,

Regarding your question your father’s platelet count in the 50’s, that’s not low enough to be of much concern. My count as of last Friday is 55 and poses no concern to me. As you note every case is different, but I don’t think there is much concern until it drops to 20 or less (I’ve been as low as 4 following my first Dacogen cycle). Also the drop over two months is nothing compared to some of my fluctuations. My hematologist noted that platelet counts tend to “bounce around” quite a bit. In addition, some drugs and supplements may have an effect on the platelet count. So unless he’s experiencing bleeding problems and/or purple spots on his skin, I wouldn’t be too concerned about the count.

Hope this provides some perspective for you.

Bill F

[Kensyen]

Jeanette

Regarding the doctors, my father saw 2 Hematologists, one was the Head of Hematology.
We didn’t receive any quality care until we got to a Centre of Excellence. I am amazed that these other “Hematologists” can even call themselves that, there is definately a two tier system when it comes to doctors; one that does the research, the other that may read the research the other doctor does. Guess which one we ended up with.

[Jeanette B]

Hi Guys,
Lynn & Bill, thanks so much for sharing your thoughts as well. I knew I was going to be in for a challenge with my parents and I was not wrong. I copied and pasted some of the posts here onto an email for them last night and my Mum emailed back saying “thank you for the research, that was very interesting”! Thursday morning their time they are being sent to the hospital for a transfusion, does that sound like the right course of action? The main thing that they thought was good was that Dad would be able to drive afterwards!!! The Centre of Excellence in Australia is in Melbourne, in another state, which makes it tough and we also have one here in North Carolina. Is there anything that you guys can suggest I do with either of them? Seeing I am the daughter of the patient and not the actual patient will they be able to advise me?

[billboy]

Hi Again Jeanette,

You ask if the transfusion is the right course of action; well it very likely is although you didn’t provide any specifics. I am assuming he will be getting units of packed red blood cells, since it was noted he would be able drive following the transfusion. What would be of interest, is to know his hemoglobin count (sometimes abbreviated HB or HGB). There may be a difference in the count notation in Australia from that in the states. In Europe they would note an Hb of 90 where in the states the same count would be 9 (at least I think this is correct). Now when he might need a transfusion of red blood cells does not depend so much on his count as his limitations due to a lower than normal count. You’ll note I’ve had quite a few transfusions. There never was any magic number or threshold where a transfusion of red blood cells was indicated, rather it solely depended on how I felt. For example, when I noticed a tendency to start breathing heavily when performing a simple task, I knew it was about time to get some red blood cells. So I was the one that determined when I got transfused. The procedure was to go to my hematologists office and have a CBC (complete blood count) and find out what my HB was so the doctor to determine how many units I needed to get. The transfusion would then be scheduled for the next day or as soon as possible.
I usually got transfused when my Hb fell below 8.5 or so. Once I dropped to 6.9, but others have gone much lower before being transfused. Your body adjusts to having less oxygen delivered to its cells in time. Currently my Hb is holding at a level between 9 and 10. At this level I perform pretty well. I just mowed our front and back lawns without having to stop for a rest. Had my Hb been at 8 or so I would have needed to take several breaks to finish the job. On the other hand my platelet transfusions were indicated solely by the count.

One last thing, FYI red blood cell transfusions take a long time as they’ll monitor you for adverse reactions. For me a couple of units would typically take four hours and three units would take about 5.5 hours. Fortunately, they serve lunch while your sitting there for this extended period of time.

Well that’s a little bit of my experienc.

Bill F

[txnmomma]

Jeanette

I am so sorry to hear the dx about your father.
I can only speak from experiences with my father. Be supportive to him! I didnt know what to expect at first. Like all illnesses, I took the approach of ‘we can beat this’

My father has had this disease for 4 yrs and he is still going strong. He has his good days and bad days. In the beginning, like your father, he didnt show any signs of having MDS other than what a CBC showed on paper.

I would definitely be finding a good specialist for him. Someone who has knowledge of MDS and exactly what it is. Where we live in Texas, it hasnt been easy to find a real good dr for my father.

Research all you can about MDS… this forum here has helped me alot. Helped me to connect with other patients and family members who have the same problem.

(HUGS)

Wendy

[Jeanette B]

Hi Guys,

I just got an email from my parents telling me that Dad had 2 units yesterday and all went well and that’s all.
Bill, yes you are right I still don’t have any details from them what so ever and it is driving me nuts. I still don’t know whether it is RAEB 1 or 2, what the blast % is, what the other blood level readings are, what is the doc’s prognosis is and what the course of action is from here on in. Again I have asked these of them in a return email, lets hope they will give me a clue soon. They are very much the kind that likes to keep everyone happy and not upset the apple cart and as far as doctors are concerned they would never ask for a second opinion or question their judgement. Thanks again for information and support, it is helping me to no end.
Wendy, thanks also to you for sharing your experiences. It is good to hear that your Dad is still going well 4 years down the track. We are in the process of moving ourselves back to Australia but we are waiting for property to sell and my son to complete his last year of middle school and you have given me hope that we wont be too late. Of course we would go sooner if needed. I think my parents are under the impression that he only has a year or 2 at the most, at least that is what they lead me to believe. It is so hard not being there with them. But like you say I will be as supportive as I can from a far.

Thanks again to all of you.

Jeanette

[helenr]

Jeanette

I sympathise with you being so far away to offer support. We live outside Sydney and attend the Royal North Shore Hosptal. We have travelled to Melbourne monthly for 16 mths so that my husband could access Revlimid on a trial basis. It worked for 5 mhs but it has been decided that he is now resistant to it. David only has his red cells affected. If your parents were proactive and possibly younger they could contact Peter Macallum Cancer Clinic via email and gain some advice.

Where do your parents live and which hospital do they attend? There is a trial starting which combines Revlimid with thalidamide but I do not know if that is suita ble. Vidaza is in the process of being approved by our Pharacy Benefits Scheme (PBS) but the process coulod take another year.

I would be happy to answer any questions. You can email privately if you wish.

Helen

[Jeanette B]

Hi Helen,
It’s great to touch base with another Aussie. My parents are in their mid 70’s, which I don’t think is all that old, but yes you are right in saying that they are not terribly proactive. They live in Chipping Norton, near Liverpool, and last week was the 1st transfusion at Bankstown hospital. I don’t know what kind it was or how well it was receieved, all the email said was how early they had to be up, how nice the staff were and that Dad was able to drive home afterward. My Mum has a circulatory issue with her feet and can’t walk very far plus she doesn’t drive, so frustratingly enough it seems convenience is high on the list. Like I said above, I still don’t know what kind of MDS it is yet and what the plan of attack is. I am going to call this weekend if I don’t get a response to my last email this week.
So how did you come by your doctor? Does he specialise in the treatment of MDS? How did you get referred to the Peter Mac Centre and what do they have on offer? My parents are just seeing their GP and a hematologist at this stage, is there an avenue to find a doc that does specialise in MDS? Okay, I know you must think I am nuts but I do have questions and I am really grateful for your help as I’m not getting the answers from home. Most of the people here on this site are mentioning various drug treatments or else that is what it appears to be. What are the results of those, do they raise blood levels or stall the disease and how do you get to that stage?
Okay, I think that is enough for now. Thanks again Helen and anyone ele who is reading this.

Thanks
Jeanette

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