Glenda H journey

[Glenda H]

Hello all

This is my first post on this forum. This is My Story and how it all began.
I live near Rockhampton in Central Queensland.

In Oct 2008 my mother-in-law said "Why don't you go and get your cholesterol checked." She had high cholesterol so I went for a blood test (probably the first one I've ever had) just out of curiosity. Anyway my GP called me back to say that my platelets were lower than normal. The test was 105 (range 150 - 400) and then I started having tests every 3 months and was considered having ITP. I also had an abdomen ultrasound which showed only mild problems. Later my GP referred me to a Physician who did a Bone Marrow Biopsy which said mild dysplasia. Anyway over the course of the next year or so the platelets went from 125 down to 84. During this time I went to a Naturopath but stopped going as didn't like his bedside manner.
At beginning of last year my GP noted that my haemogloblin count was starting to go down so after a couple months once again went to see the Physician. Anyway he then referred me to a Haemotologist who comes here. However he was on holidays so I had an appointment with another one down in Brisbane. He arranged for me to be fitted in to see the Haematologist who comes up here as well as other blood tests and another bone marrow biopsy. In the meantime I started going to another Naturopath here and found him much easier to talk to.

I had the bone marrow biopsy on 4th Oct and then had my first blood transfusion on 29th Oct. I also had another abdomen ultrasound, chest xray and echocardiogram all fairly okay. My haemogloblin had gone down to 57 (range 115 - 165) so I had not much energy and feeling rather fatigued. Since then I've had another 2 transfusions end of November and December. My last blood test count had gone down to 72 so probably will have another transfusion in the next day or so. The BMP showed monosomy 7 in 33% of cells and 2:20 translocation. Summary was Refractory cytopenia with multilineage dysplasia. IPS (Intermediate 2 risk group).

I have weekly blood tests (FBC and Routine Chemistry) and after visit with Haematologist (every 4 to 5 weeks ) he requests Iron Studies. He has spoken to me about having Vidaza injections which would mean having to be down in Brisbane for 10 days every month for 6 months.
At this stage I am trying some alternative treatments as well as Blood Type Diet (B+). The main one being treatment with a machine called Physiospect which looks at all areas of the body right down to DNA fragments and can treat those areas using Meta-Therapy. For this treatment I have to fly down to the Gold Coast and stay overnight. I usually do this every 3 to 4 weeks. This Naturopath also has me on Product B which was developed in USA (Telemore Support and Antioxidant). Since I started the transfusions I set up Charts for Haemogloblin, White Cell Count, Platelets and Neutrophils.

Regards

Glenda H

[NLJabbari]

Hello Glenda H., So will you be doing both the alternative treatment and Vidaza? What does your hematologist think of this? Sounds rather interesting...Please keep us informed as to how you're doing and feeling.

Take care

[Neil Cuadra]

Hi Glenda.

Vidaza treatment has risks, but if the tests show that your condition is worsening over time and you are classified Intermediate 2 then doing nothing is also risky.

How hard would it be for you to stay in Brisbane for the necessary amount of time in order to take the Vidaza treatment? Where would you stay? Would insurance cover all of the expenses?

I don't know anything about Meta-Therapy. Since it requires travel and an overnight stay, it's not a convenient treatment for you either. Has there been any measurable improvement from these treatments?

Whatever you decide, make sure all of your doctors know all of the treatments you are getting.

[Glenda H]

I had another blood transfusion last Wednesday (6th) . 3 units. Today I went to my GP for a copy of the latest blood tests. Haemogloblin the Monday before (4th) was 66 and this Monday (11th) was 98. It was nearly 7 weeks since I had the previous one. My appointment with the haematologist is next Tuesday.

[riccd2001]

All units of PRBCs are not equal. The volumes are different. The expiry dates are different.

It's important to keep your own record of the dates of infusion, the volumes infused and the dates of PRBC donation and expiration. Keep a precise record; you may be quite surprised at the volume variations and just how long the transusions "work" for you, just sayin'.

[Glenda H]

A mix up with appointment time so had to go back again on Wednesday to see Haematologist. He gave me a good check over and now wants to see me in 2 months time instead of 1 month. When I finish the present card of weekly blood tests (3 to go) I'll go on fortnightly blood tests. He has also given me some special blood tests to be done about 2 weeks before my next appointment. Iron Studies, Vitamin B12, Folate, Thyroid and Haemochromatosis Gene Studies. One of my brother's had Haemochromatosis. My ferretin level was higher than normal before I started any transfusions but could be because of the MDS.

I am flying down to the Gold Coast on Monday for another treatment with the Physiospect and I'll be interested to see if I've made any progress.

[Marlene]

Glenda,

Good luck with your treatments. I am always intrigued by energetic healing approaches. So please keep us informed about that aspect of your treatment. What it entails and your response, not only to blood counts, but overall health improvements.

You may want to post a thread under Alternative Treatments so other can track your progress with the Physiospect.

Thanks,
Marlene

[Glenda H]

I had another transfusion on Wednesday 6th March. Hb was 78 the Monday before. 3 units of packed cells. I was admitted to hospital at 11.30 and the first unit didn't start until 4.45. This time I took some knitting with me which I did while waiting for the doctor to put the canula in. The time before I found out there is a library at the end of the ward so got a book from there to help pass the time. Last unit finished about 4.45 the next morning.
On Monday 11th March I had another blood test and went to the doctor (GP) today for the results. Hb was 113.

[Glenda H]

I had another transfusion on 10th April the usual 3 units . I saw my haematologist the following Tuesday and now I have started on Exjade. Until I see him again in a month's time I'm only on 250mg per day which he'll probably increase later. Ferritin was 528 so certainly not as high as others I've been reading about. Anyway we are going on holidays soon so hopefully being on a low dosage of Exjade won't cause me any problems.

[Chirley]

Hi Glenda,

I thought that Exjade should only be prescribed when ferritin was over 1000. When I was put on Exjade my ferritin was over 5000 and I remember my doctor mentioning the minimum of 1000. I didn't think that Exjade could be prescribed on the PBS with a ferritin of less than 1000 because the doctor used to have to put in an authorisation request to Canberra. That was a few years ago maybe the system has changed. Perhaps you have some co existing medical condition which makes it important to have a lower ferritin level? Are your liver enzymes normal?

Can I ask what treatment centre you're going to? I used to go to HOCA at Mater and Chermside and then transferred to Logan but (hopefully) am in the process of going back to Mater but not HOCA.

Regards

Chirley

[Glenda H]

Originally Posted by Chirley

Hi Glenda,

I thought that Exjade should only be prescribed when ferritin was over 1000. When I was put on Exjade my ferritin was over 5000 and I remember my doctor mentioning the minimum of 1000. I didn't think that Exjade could be prescribed on the PBS with a ferritin of less than 1000 because the doctor used to have to put in an authorisation request to Canberra. That was a few years ago maybe the system has changed. Perhaps you have some co existing medical condition which makes it important to have a lower ferritin level? Are your liver enzymes normal?

Can I ask what treatment centre you're going to? I used to go to HOCA at Mater and Chermside and then transferred to Logan but (hopefully) am in the process of going back to Mater but not HOCA.

Regards

Chirley

Hi Chirley

I live near Rockhampton and am seen by a haematologist from Brisbane who comes up here about once a month. He is with HOCA at the Mater /Chermside. Yes he did mention earlier about the ferritin being at 1000 so don't know why he decided to start the Exjade .I will ask him next time. In last test 15/4 Re liver the ALT was a little bit high and in the Iron Studies the Trans Sat was higher as well.

Regards
Glenda

[Chirley]

Hi Glenda,

If I remember correctly James M used to travel to Rocky. He has an excellent reputation. Pity he is a little hyperactive.....(understatement).

Good luck with the Exjade. I was started on 1000 a day but ended up dehydrated and with pancreatitis so I had to stop. Luckily I stopped needing transfusions so I had venesections to bring the ferritin down. I haven't had a ferritin level since around August/Sept last year but it was under a thousand then.

Are you a member of the Leukaemia Foundations telephone forums. I used to talk on there regularly but I stopped feeling as if I belonged due to my diagnosis change. I found it very helpful.

Regards

Chirley

[Glenda H]

Originally Posted by Chirley

Hi Glenda,

If I remember correctly James M used to travel to Rocky. He has an excellent reputation. Pity he is a little hyperactive.....(understatement).

Are you a member of the Leukaemia Foundations telephone forums. I used to talk on there regularly but I stopped feeling as if I belonged due to my diagnosis change. I found it very helpful.

Regards

Chirley

Hi Chirley

My haematologist is Dr Stephen F. No I'm not a member of the L F telephone forums. This is the only forum I'm on re:MDS
Kind Regards
Glenda

[Chirley]

Hi Glenda. I've never had anything to do with Stephen F but I have seen him around.

If you are interested in joining the LF for telephone forums, access to education lectures, mailed out information pamphlets and new treatments etc. the person to contact is Rebecca Dring .....MDS@leukaemia.org.au

The telephone forums are held once a month and for the cost of a local call you are connected with people from all over Australia who have MDS. There is always a moderator and quite often there are guest speakers ranging from oncology pharmacists, haematologists to research scientists recruiting for trials.

Regards

Chirley

[Cheryl C]

Thanks Chirley. I didn't know about the Aussie forum and have contacted the email address you provided.

[Glenda H]

We are going on holidays on Monday but I will look into the forum run by L F on our return. Thanks for that information Chirley.

Regards
Glenda

[Glenda H]

Its been a while since I've done a post here. Since last time I posted I've had a couple blood transfusions with no ill effects. I've been seen by the haematologist and he increased the Exjade to 500mg a day. Results of blood test 20/06/13 HB was 100 WCC 3.8 (This after last transfusion)
I think next visit to haematologist 9/7/13 he may discuss having another BMB.
On Thursday I have an appointment with a Natural Therapist near here just to get her view on the situation.

[Glenda H]

Well I haven't posted for a while. When I had my appointment with the haematologist in July I mentioned about having a bone marrow biopsy. When he was dictating to his secretary he said about having one in early Nov. My next appointment with him is on 12 Nov. I wanted to make sure there was enough time for the results to come back. I finally got around to ringing about the BMB and found that it hadn't been booked. When I had a BMB done here last Oct one part of the test wasn't done so the haematologist so he would do it down in Brisbane. It seems that a different person does the bookings at each hospital and I had chosen the Wesley because of being near a railway station. This is with a twilight anaesthetic. Anyway it is now booked for the 25th Oct.
My last transfusion was on 8th August. HB 2 days prior to that was 70. HB 14 days after was 94. I'm hoping it will still be reasonable next week as I've been invited to a 80th birthday party next Thursday. I'll have a blood test next Tuesday to check HB.

Today I had another visit to the Natural Therapist at Yeppoon. I take down my latest blood test results and she goes through them and then gives me any necessary supplements after testing them for compatibility. Last time I was there she said my kidneys/adrenal glands were stressed. There seems to be a link between the kidneys and the bone marrow as far as red blood cells are concerned.

[Glenda H]

Well it is a long time since I did a post. Anyway I had a BMB done with twilight anaesthetic down in Brisbane at Wesley Medical Centre last Friday 25th Oct. I was dreading having the anaesthetic as never had any in my life. (I'm almost 59) but no problems and certainly better than with local. I was given 1 unit of blood as HB was 90 and my heamatologist likes you to have blood at 90. We let it go lower up here.

I have an appointment with him on 12 Nov so will get the BMB results then. I'm hoping if I go to my GP around the same time she may have a copy of it so I can be a bit prepared when I see the heamatologist. I am becoming resigned to the fact that I may have to go on Vidasa. However I am still pursuing alternative treatments and have made an appointment to see another Naturopath down in Brisbane.

[Neil Cuadra]

Glenda,

I'm glad the anesthetic went well.

How often have you gotten transfusions over the last few months?

[sbk007]

GlendaH, In the U.S. most specialists would have started you on Vidaza straight away unless its refused. I've had 6 rounds, round 7 next week. Its a well tolerated drug and if it kicks in you avoid transfusions and have a much better quality of life.

[Glenda H]

Originally Posted by Neil Cuadra

Glenda,

I'm glad the anesthetic went well.

How often have you gotten transfusions over the last few months?

I've been mainly having transfusions every 4 weeks. One time it was 3 weeks but that time I was given 4 units.

[Glenda H]

Originally Posted by sbk007

GlendaH, In the U.S. most specialists would have started you on Vidaza straight away unless its refused. I've had 6 rounds, round 7 next week. Its a well tolerated drug and if it kicks in you avoid transfusions and have a much better quality of life.

When I had my previous BMB the Dr spoke about Vidaza but at that time I didn't want to do it. However it will depend on what the result is for the current BMB. I would have to fly down to Brisbane and stay there for 9 days each time for 6 months. I think here that treatment only continues if there seems to be a positive result.

[sbk007]

I didn't want to do it either. I was scared of the whole experience. I took a pill to control nausea had the treatments and next week I go for my 7th round. Its a well tolerated drug. Same here in the U.S. If its not effective they stop but it usually takes 4 rounds to see results and before they make that decision. With transfusions you never get a full tank, but Vidaza or Dacogen can get your counts to normal or close to it and keep you away from the 5 hour blood transfusions.. Hope that helps.

[Glenda H]

I am now down in Brisbane and starting vidasa at icon at the Wesley hospital. L F organised accommodation for me just across from where I need to go. I've had a couple lots of diarrhoea but have tablets for that and take a Navoban each morning. Blood test this am . I bought myself an I Pad so getting used to using it. All my family are keeping in regular contact with me.