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towncarlady
Thu Jan 7, 2010, 05:02 AM
I am interested in any members who may be experiencing iron overload due to transfusions. Anyone had iron chelation therapy?

Birgitta-A
Thu Jan 7, 2010, 03:10 PM
Hi towncarlady,
There are probably many members who are receiving transfusions and have developed iron overload. I was dx with MDS Interm-1 May 2006 with HGB 7.0 and has been tx dependent since dx. Now I have received 106 unit of packed red blood cells and have got iron chelating therapy since Aug 2007.

I get Desferal iv from a small home pump 4 days with tx and then I have tried Ferriprox (not approved in the US) and Exjade. They both decreased my WBCs so for the moment I am trying Desferal as usual and 250 mg Exjade/day (the normal dose for me should be 1250 mg) the days I don't get Desferal. Exjade has not been combined with Desferal in MDS paients so that treatment is off label.

What do you want to know about iron chelation?
Kind regards
Birgitta-A

Jen B
Fri Jan 8, 2010, 12:13 AM
Hey Towncarlady,
My son was diagnosed with SAA at the age of 3 (he is 4 now). After almost a year of transfusions they started him on Exjade. He had pretty severe reactions to that drug - rashes and fevers, one that landed us in the hospital. In the end, they put him on Desferral at home on a pump 2x a week for 8 hours each dose. We were trying to keep his numbers from getting higher before transplant. I have read Exjade works well, just some have reactions to it - and unfortunately my son was in those numbers.

Now, just recently on the other side of transplant, they will be checking his ferritin levels again next week. I know he will be very high as he was high when we went in and he has gotten several red transfusions so far since transplant. Red cells haven't kicked in yet - I understand sometimes they take a while.

Hope this helps.

towncarlady
Fri Jan 8, 2010, 12:33 AM
I am actually the one that raised the question...not my doctors. I am not currently seeing a hematologist. I was diagnosed in January 2008, after I pursued the reason for my constant respiratory infections and anemia. I am almost positive that I have had MDS actively since 2005. I was initially diagnosed with RARS, then identified with Trisomy 8.

it is a bit encouraging to know that you are still surviving after so many transfusions. My ferritin level is 1651; my new primary care physician at least is trying to learn. We agreed to wait on chelation at this time. I have studied about Exjade, and am concerned about complications with GI problems. What is your ferritin level? How does the treatment affect your body?
At the moment, my WBC and Platelets are low normal after being off chemo since February, 2009 (Dacogen 5 rounds).

Do you take a daily dose or only following a transfusion? I will be very cautious about further treatment under I know more.

I appreciate your help.

Birgitta-A
Fri Jan 8, 2010, 06:09 AM
Hi towncar lady,
Patients with RARS often have a good prognosis :). That means that you will need iron chelation. When doctors discuss iron chelation they look at the prognosis, liver tests and eventually the iron in the heart with MR.
http://www.mds-foundation.org/pdf/iron-english.pdf

I have a port-a-cath that was implanted Jan 2007 because my doctor knew I should need Desferal that is the first drug for MDS patients in Sweden. A port is a small device of titanium with a catheter to a big blood vessel so I can get transfusion and Desferal infusions without feeling anything.
http://en.wikipedia.org/wiki/Portacath
As far as I understand many patients get Desferal sc (under the skin) but I think iv (in the vein) is better.

Desferal has not given any adverse reactions :). When I tried Exjade up to 4 tablets/day I devided the dose and took 2 tablets in the morning and 2 tablets in the evening (2 hours after meal and 30 minutes before meal) to avoid nausea and I didn't get any adverse reactions that I could feel but my WBCs decreased :( (my HGB increased).

My latest ferritin value was 1844 but I hope the next will be lower. My liver tests have always been OK. Actually my doctor (a specialist in MDS) isn't sure about the effect of a low ferritin level. Many studies have showed that it is important for patients with other types of blood diseases and they are now starting a study with 630 MDS patients to assess the efficacy and safety of iron chelation therapy with deferasirox compared to placebo in patients with myelodysplastic syndromes (low/int-1 risk) and transfusional iron overload.
http://clinicaltrials.gov/ct2/show/NCT00940602?term=iron+chelating+mds&rank=1

Kind regards
Birgitta-A

leeslay
Fri Jan 8, 2010, 01:55 PM
I was diagnosed with AA, MDS and PNH in March of 2009. I have had to get probably about 12-15 red blood transfusions. Everytime I was set up for one I heard "we just need to be careful about iron overload". But the whole time they never checked my levels so they never knew. It wasn't until I finally asked what my levels actually were that they told me they never checked. So when they finally did my levels were over 1800 and now I need to get on Exjade right away. Well that takes about 3-4 weeks to get on so now I'm on 11 tablets. Well in the meantime the Dr. office was supposed to sign one little form and fax it over to the Exjade company so I can continue the medication, but when I called to get the refill low and behold the Dr. office "forgot" to so now I have to wait again.

So I went in Monday and had to tell them what levels to check and see what needs to be done.

Can't wait to be well enough to drive up to Denver!!! Then maybe I'll be able to trust my Dr to pull the right tests when they need to be pulled.

Birgitta-A
Sat Jan 9, 2010, 09:15 AM
Hi towncarlady and Lee,
For towncarlady: I read info about Trisomy 8 that says that 67% of patients who have trisomy 8 as the sole abnormality in de novo MDS responded to ATG. Perhaps you could ask your doctor about that?
http://www.clinicaloptions.com/Oncology/Treatment%20Updates/Myelodysplastic%20Syndromes/Module/Diagnosis_and_Treatment/Pages/Page%206.aspx

For Lee: Good that you know so much about your disease :) but it is really too much that you have to take all this responsibility yourself.
Kind regards
Birgitta-A

helen c.
Sat Jan 9, 2010, 06:05 PM
hi i havent posted in a while my husband is transfusion dependant in 08 he only got 2 units of blood 2 times but in 09 he received tx every 2 weeks until april and then every week, this mon. it will be 2 weeks since last tx he gets labs twice a week and this past thursday he was 8.3 so we decided to wait until mon. we were wondering if exjade would increase as because he was on 250 exjade but at last ferritin ck. he was 2700 up from 2300 so dr. put him on 500 a day he also gets desferal by iv when he gets blood he has had no side effects from it also his platelets usually in the 20 to 40 range has increased to 95 do u think that maybe it could be the exjade we are grateful for any improvement

towncarlady
Sat Jan 9, 2010, 06:12 PM
Thanks for your responses. Unfortunately, it is very important for each of us to be our own "patient" advocate. After reading some of your responses, I think my next move is to check some organ functions. I am also considering seeking a second opinion on treatment with another hematologist. I have an appointment with my GI doctor on 1/15. My drug intake affects my GI tract easily. I don't know that I am ready for any new drugs at this time.

Please keep sharing! It really helps.

towncarlady
Sat Jan 9, 2010, 06:21 PM
I failed to mention that I have a port. The doctor wasted no time getting that done for chemo (8/08). I guess he thought I would be a long term "patient". Have any of you had chemo?

I was not checked after beginning chemo, until I balked at the suggestion that I take an iron supplement: NOT SO FAST! I requested a count. WOW! 1651. My new primary care doctor will check, again in February (last checked 11/10/09.

Many thanks!

helen c.
Sat Jan 9, 2010, 07:19 PM
yes my husband has a port makes everything so much easier and he recieves vidaza every 28 days he gets that thru the port also

Birgitta-A
Sun Jan 10, 2010, 05:37 AM
Hi helen C and towncarlady,
For helen: Exjade can increase HGB but I don't think I have read anything about platelets. Exjade has a positive impact on the bone marrow so it could be possible that the platelets increase.
http://ash.confex.com/ash/2008/webprogram/Paper7552.html

For towncarlady: I am very afraid of adverse reactions like nausea :( so I have only accepted supportive therapy so far like tx, Desferal, Exjade and Neupogen.
Kind regards
Birgitta-A

Helen Robinson
Thu Jan 14, 2010, 02:26 AM
My husband has had 130 Txs , usuallyy of 3 units. He has been chelating with desferal since 2005. It is important to decrease the ferritin before it is over 2000. His doctor did not worry about the increase in ferritin because the survival rate was a lot lower in 2003.

Exjade is convenient but caused liver damage even though he started at a lower dose. Desferal infusions are not as convenient having to wear a pump overnight for most nights but the lower ferritin levels seem to have improved his transfusion interval. We are not considering a port-o-cath until it is essential because he probably would not survive if it became infected. He is a carrier for staph on the skin which means extra care with the subcutaneous desferal infusions.

My advice is to read as much as possible before starting any treatment and always start at a lower dose to be safe.

Good luck
Helen

towncarlady
Fri Jan 15, 2010, 09:25 PM
Helen,

Thank you for sharing. Everything that I read from the forum members give insight into many areas. When visiting one of my doctors, today, he concurred with my new internist..... NO CHELATION AT THIS TIME. Many of you have had much more experience than I with MDS, and to know that you have survived the process this long gives us hope. I am very skeptical about putting any medication into my body since it is common for my system to "over-react" medically to many drugs. Better safe than sorry!

I currently am stable in all counts; some low normal in some and others better than even a few months ago. No tx since November 2, 2009.That does not mean my diagnosis has changed; however,my quality of life is far better off treatment than before.

Many thanks!:)

kris
Tue Feb 2, 2010, 12:51 AM
My husband has MDS- RARS with multilinear cytopenias. He was dx in 2005 but he has had anemia for more than 10 yrs. He was diagnosised and started on Arenesp and told he would need to start either Vidaza or Revlimed ASAP. We were moving and obtained a second opinion.
:) We are so glad he is being treated in Birmingham. He had another bone marrow which again confirmed the diagnosis but also was able to continue with Arenesp until it nolonger proved effective.(nearly 18months) Hubby became transfusion dependent and was started on Vidaza sq 7 days/28 day cycle. WOW we saw changes in just a few weeks and he was off transfusions and is still recieving Vidaza a year later. Blood levels are back up. Oddly while being transfused his ferritin stayed pretty consistant between1800-2000 so he never was started on chelation tx. He discussed waiting until it was>than 2500.
Well this month he jumped to >3500 in 2 months.:confused::confused: Unsure why the sudden change. So he starts Exjade po as soon as all the paperwork is filed and we recieve the medication.
Don't know much about iron overload.(Nor Exjade for that matter) "They", all the articles talk about it, write about it and the symptoms which are so like the MDS symptoms....just one more hurddle to climb.
Any suggestion from those on chelation tx before he start?:confused:

towncarlady
Wed Feb 3, 2010, 12:54 AM
Kris,

First of all, I am only about 40 minutes away from Jasper, AL. I have just changed doctors, and possibly facing chelation therapy. To anyone near the Central Alabama area, please feel free to correspond by e-mail. I hope to get new satellite internet equipment this week. I will probably in a week or so resume my hughes.net address. With faster service, I should be able to keep in touch better. I will try to remember to notify my Marrowforum friends.

I will be happy to share what is happening on the change of doctors. Second opinions never hurt; I feel better that I am following up on my treatment plan. Yesterday was my first visit. I have not heard lab results, yet.

Thanks to all of the members!

Becky
Wed Feb 10, 2010, 10:31 PM
Iíve been dealing with iron overload about 5 years but also chronic anemia. I started having phlebotomies on a regular basis last year but it was making my anemia worse. I felt I needed better quality of life and was referred to George Washington Medical Center in DC and after tests referred to a study at National Instate of Health.

I was hoping to be accepted in a trial at NIH but in the end I didnít meet their protocol. I was too old for the study GW recommended. The cut off age is 72. I was 73 last year when tested and turned 74 in January. The trial, if accepted, was to correct the bone marrow disorder, which, in turn would make treating the Hemochromatosis, a breeze, phlebotomies every 2-3 months.

It seems I was boarder line for another study, blood count has never been low enough for a blood transfusion. If it did drop below 10, I received a procrit shot.

Birgitta-A... I started taking Exjade a week ago to lower the iron (1000-mg). Itís supposed to be a reduced dosage. The side effects, like any drug, concerns me. I joined the forum to see how others responded to the drug. I was told I must take the drug in the morning on an empty stomach but I saw where you had taken the drug in the evening as well. That seems a better option for taking two @ 500mg.

Birgitta-A
Thu Feb 11, 2010, 05:50 AM
Hi Becky,
Yes, I took Exjade morning and evening. The important thing is to take it at least 2 hours after meal and at least 0.5 hours before meal.

We are supposed to take 20 mg/kg/day - I should take 1250 mg - but it is important to control blood counts and creatinine (kidneys) every week. After 1000 mg my WBCs decreased and I had to stop taking the drug. After a few weeks I started again with 250 mg/day and after 2 months I tried 500 mg/day. This time my WBCs are holding but the platelets are decreasing so I don't know if I can continue with this dose. I have got Desferal during 4 days in connection with transfusions since Aug 2007.

Hope you will have a good response to Exjade without adverse effects :)!
Kind regards
Birgitta-A

towncarlady
Thu Feb 11, 2010, 02:00 PM
I am not exactly clear on how EXJADE works. What is the length of treatment? What are the risks of not treating ironoverload? My ferritin level has been in the 1500-1651 level. I am supposed to possibly fill out paperwork to qualify for financial help for treatment. I know that it is very expensive. I am sure that Birgetta-A can probably answer these questions. Many thanks to members input.

Neil Cuadra
Fri Feb 12, 2010, 02:52 AM
What are the risks of not treating ironoverload?
Untreated iron overload can eventually lead to organ damage. Treatment is necessary if iron stores continue to increase but doctors' opinions differ on exactly when to start treatment.

You can read the Marrowforums Iron Overload page for a brief introduction to iron overload and follow the links at the bottom of the page to find more information.