Aranesp

[Kitty]

I've just been diagnosed with MDS Intermediate 1. I had one transfusion because my hemoglobin was 8 and now the Dr. put me on Aranesp. Any one has any experience with that drug. It's been two weeks since the shot and I don't feel much better at all. Also, does any one now about the throbbing pain in the ear? What is that about?
Thank you for any help. I am still trying to recover from the shock of the diagnose.

____________________________________________________________________________________________________ _________
MDS intermediate I, blasts <1%, trisomy 8, Hmg. <10, on Aranesp 250 weekly

[Zoe's Life]

Kitty,

Welcome. I have been on Aranesp since Februrary. I have had no side effects and it keeps my hemoglobin in the 11 range. It can take several weeks to respond for some folks. What is your dose and how often do you get injections? I am on 300 mcg every 2 weeks. I don't know about the throbbing pain in the ear. Maybe it's something not related to MDS?

I was just diagnosed last November. I remember being in shock and researching like crazy. I now can accept it as part of my life. Although I weird out more quickly about any health issues that come up because I am not sure if it is MDS related. Things that in the past I would have ignored, I am now quick to make a medical appointment. Maybe this stage will pass too, I don't know.

For me, knowledge has been my best weapon. It is how I cope I guess.

Zoe

[Linda]

You could have an infection, which with MDS is important to take care of. Also you need to read all you can about this disease. In "Uncertainty with MDS" there are a bunch of links to look at. It is confusing, but read, digest, read again.
Hope you are doing better.

[Tom M]

I agree with Linda and Zoe. Knowledge is power. Learn as much as you can about the disease and its many forms and treatments. Learn how to read blood test results and don't be afraid to ask your doctor questions.

As for the Aranesp; I don't have any experience with that. My medical coverage will not pay for any type of injectable blood enhancers. I am fortunate that my medical will cover my Exjade and Revlimid, so I count my blessings there.

Lastly, anytime you feel that something may be wrong, such as the throbbing in your ear, it would be wise to check in with your doctor and rule out any kind of infection.

Stay positive and proactive.

[celebrations]

Hi Kitty and everybody else on that thread,
I am 50-year-old RARS-female, dx in Feb. 2007 -
The shock of diagnosis was horrible, the first days I couldn't stay alone, because I was afraid "sth. severe would happen to me".
Now - as all the others - I have far or less integrated this wicked disease into may daily life.
Since 8 weeks I am on EPO, my HGB is around 11 through that aswell, I have re-achieved a good QOL. No side-effects, normal low blood pressure. I had been down to 9 and was suffering from real fatigue thus working full-time. I could not handle that anymore. Now I can go through the day as before the diagnosis and still there is some energy left!!!
The median time for the response on EPO is between 17 and 23 months and I pray that I will succeed in that range. I also know one MDS-patient in another forum who has been responding for 4 years now (only that he changed from Procrit to Aranesp or vice visa).

There is a lot of black talking around EPO for the time being, but this does not concern "normal" MDS-patients.
It concerns those, who have pushed their HGB-level over 12...then there is a great risk for blood-clots and those, who have tumors....probably EPO makes them grow or grow faster.
Greetings,
celebrations

[Lisa V]

Originally Posted by celebrations

The median time for the response on EPO is between 17 and 23 months and I pray that I will succeed in that range.

celebrations, could you tell me what you mean and where you got these figures from? Do you mean that EPO is likely to stop working after a couple of years?

Ken has been on Procrit for nearly 3 years now and it's still working for him. We've cut the weekly dose in half (from 40 to 20) with no ill effects, but whenever we try skipping weeks his Hgb starts to slip. With the weekly shots he is able to maintain in the 12-13 range, so I'm hoping it never stops working, even though I wish he didn't need it.

[Zoe's Life]

Lisa,

I am not Celebrations, but I have seen the two to three year figure from other forums and websites also (sorry I don't know where off the top of my head, you might try googling aranesp and mds). On another forum, there was one man for whom Aranesp and Procrit (he started on one then switched to another, but I forget the order) worked for 5 years. That is the longest I have seen so far.

I am surprised that they are keeping your husband in the 12-13 range. First because from what I understand it is rare for an MDS patient to even reach 12 (my highest has been 11.9, then it started back down to 11.1). So that is great for him that he can get that high! Second though, there are health concerns if EPO usage causes the hemoglobin to go above 12 (there has been a lot of recent discussion about that lately on-line, plus my hemo told me that at my last visit). My hospital order reads that the Aranesp is to be held if my hemoglobin reaches 12. The concern is blood clots. The research is about chemo patients, but it has carried over to MDS.

Zoe

[Lisa V]

Zoe, I have seen all the recent reports of the dangers of EPO use, and even though the results they cited were for patients with head and neck tumors and not for MDS or AA, I have been concerned enough about it that we've been cutting the dose back to see how little he can get by with. We've discussed this with his doctor and he doesn't think it's any cause for concern unless you try to push the Hgb to higher than normal levels, which we certainly have no intention of doing. I'm not sure I agree with him 100%, and so have adjusted our target downward just a bit, but I don't want it to get too low if we can help it because our work is very physically demanding.

Actually, we just got his latest reading and it's back up to 12.6 even after skipping a week, so he may not need the EPO as much as he used to. If he can maintain between 11.5 and 12.5 we'll just keep decreasing it until we see a difference. I don't know if it's rare to reach those levels with MDS, but his illness is really closer to AA. The only thing that makes it MDS is that he has a trisomy 8 mutation. He has responded enough to ATG/cyclo that his Plts and WBCs have been maintaining at a liveable level (last count 59 and 2.7, respectively), so that is probably helping his RBCs too.

His doctor also said he had a patient who had been on EPO for 10 years with no problems, and I know iron-deficiency anemia patients that have been on it a long time too.

[John R]

Like you my Hg fell below 8. I was tansfused once and a week later given a 300mg shot of Aransep. I'm supposed to receive this shot every 2 weeks. I understand it may take up to 6 months for it to work. Haven't had any side effects yet.

John R.

[Zoe's Life]

Lisa,

Wow! 10 years! That is encouraging.

Good for you being so proactive with Ken's medical condition. He is lucky to have you!

Now I just have to figure out what is going on with my heart. I am getting a referral to a cardiologist. This is crazy!

Zoe

[celebrations]

Hi Lisa V and everybody,
all I read about EPO here is correct, means that I already have heard and read about elsewhere...
Some questions:
how do you decrease the dosis ? I mean you can skip a shot, do you just give half shots or three/third or whatever ? Do you discuss that with your hem ?
What's about the RBC, do they increase under EPO ?
Mine remain relatively low (from 2,3 to 2,8 only!) though the increase of the HBG (9,1 to 11,2)

I am equally trisomy 8 and RARS.
Greetings, cele

[Zoe's Life]

Celebrations,

My RBC's have also stayed about the same, although they are staying in the low 3's lately and haven't dipped back to the 2's like prior to Aranesp. My hgb is staying in the 11's now though.

I would think they might decrease the dose or skip a dose. I would definately talk to my hemo prior to doing anything differently. I don't understand enough about how EPO works to play with it without consulting my hemo. I understand the basics, but that is a long way from true understanding.

Zoe

[Kitty]

Everyone thank you for all the information! I am brand new at this and it's great to get so much information on this site. It makes my search easier.
I got my second transfusion 3 units on Friday because I dropped to 6.6. They tell me at Stanford that it was a delay reaction to the first transfusion not the effects of Aranesp. I was also in a lot of pain "all over." So they want to start me again on Aranesp once a week. I wonder how it'll go. I would appreciate any comments about others going through this.

By the way, I am looking for someone that woud like to drive from California to Las Vegas for the MDS Conference on Aug. 15 - 17. (I didn't feel well the last time I flew) If you are interested let me know and we can chat about it. I am already register for two people so the registration and the food is free and the room is $139/night. My doctor tells me she'll get me all ready and that I should go! And I love to drive!
---------
Kitty - Female Retired Teacher 59 - MDS RA Hmg.11.6 Intermediate 1 - diagnosed 6/11/07
blasts <1 Trysom 8

[Lisa V]

Originally Posted by celebrations

how do you decrease the dosis ? I mean you can skip a shot, do you just give half shots or three/third or whatever ? Do you discuss that with your hem ?

Celebrations- We discussed it with our hem/onc and he said we could either cut the weekly dose in half or skip every other week. We had tried skipping weeks once before and his Hgb had dropped and never came back up again (until after he had a second ATG), so we decided it would be better to try cutting the doses in half. We have been working with the hem/onc dept. pharmacist and he has been willing to pre-load the syringes for us under sterile conditions so that I won't have to pierce the same vial twice. After doing that for a couple of months his Hgb has stayed in a good range so now we're giving the half doses AND skipping weeks too. So far so good!

[celebrations]

Hi folks,
thanx for answering to the EPO-topic (I get ERYPO in Germany) and to the dosage-questions.
Unfortunately I had a terrible tooth-infection for about three weeks. The dentist failed to save the tooth (or was it me, who cannot cope with infections anymore..??), anyway it was extracted...I have been taking antibiotics and a lot of drugs against tooth-pain....
So my blood-counts yesterday were poor, HGB only 10,6 under EPO...(11,2 a month ago)...
Does anyone have experiences with infections under EPO and that the counts drop due to the infection ????
I pray that I have not been responding to EPO for only 2,5 months...what do you think ? My next record will be Aug., 2nd.
Greetings, Bergit

[Zoe's Life]

Bergit,

I don't have experience with infections and EPO, however I did see a hgb drop of 0.8 in a month on EPO. I was afraid that the EPO had stopped working and it was the beginning of a downward trend. However, the nurse at my local hospital told me it isn't that unusual to jump around like that. It has since gone back up to 11.4. I wouldn't worry too much unless it starts down and keeps going.

Zoe

[katherineann59]

Hi, I am new to this site, but I have been diagnosed with MDS for a year. Since my diagnosis, I have been getting monthly treatments of Vidaza. My treatments include 2 shots every day for 7 days. I also get a monthly shot of aeranesp and neulasta. In the threads I've read so far, it looks like my treatment is a lot different from others. Is anyone receiving course of treatment similar to mine? Thanks.

[Linda]

Hi Kathy,

Hope you are doing well.

Your treatment is very similar to what Bob received last year. He got Vidaza the same way with 3 weeks off in between. He also received Arenesp as needed, (not a set scedule) and Neupogen as needed (every from Feb 06 until May). His doc likes the flexibility of Neupogen. It is the same type of med as Nulasta, just on a daily dose.

You are correct that many are getting different treatments. It depends on the way MDS is affecting the individual.

[katherineann59]

Hi Linda,
Thanks for the reply. How is Bob doing? My doc says I am not a candidate for a bone marrow transplant. She tells me as of right now, I'll continue with the vidaza indefinitely. Did Bob get a Bone Marrow transplant? I'd like to ask a general question to whomever would like to reply: How do you deal with the treatments, both mentally and physically? Thanks for any input you might like to share.

[Linda]

Hi Kathy,
No, Not ready for BMT yet. See Counts not recovering on Dacogen. Thanks.

[Kevin R B]

Hi Kathy,

I was about to sell my bike and then I read your post last week in which you mentioned that you are still able to excercise somewhat. I am worried that if I go for a ride or walk some distance I will A) deplete my heamoglobin and B) put my heart under unnecessary stress. What has your doctor instructed you? I have been told to be as inactive as possible but feel that this may be over-cautious? My heart rate does redline when I exert myself too much (like getting up off the sofa to turn on the light ) but perhaps I will buy a stationery trainer and see how that goes... I just don't want to have to increase my transfusion requirements any.

I saw in an earlier post of yours that you asked how does one deal with the treatments. You know I consider myself so lucky at the moment that all I have to deal with is having a line put in once every 3 weeks or so. When I was in hospital having chemo I got very depressed at all the tests, needles, antibiotics etc. that were involved. Then I would see innocent children undergoing even worse treatments and I would feel ashamed at being so grumpy. The kids have it the hardest, I really feel for them and their parents whose lives are turned completly upside down.

For me what works best is just taking things ONE day at a time. I don't think long term regarding treatment as things can change overnight. The daily self injections are the worst. It is easier if a family member can inject you (unless you are okay with this). I really stressed out when I was on Neupogen as I kept thinking I wasn't injecting at the correct angle etc. The nurses make it look so easy - I used to take about half an hour to administer the stuff!

What has helped me mentally is going back to work. I am very blessed in that my company have signed me up as a contractor and allow me to work from home on days when I am not feeling good. They understand that I need plenty of time off and I fill in a weekly time sheet for the hours I work. This way I don't have to feel guilty about being paid for time when I am not working. I have also substituted my previous sporting activities with other hobbies. I've always wanted to learn how to play the guitar, so now I spend hours trying to get my chubby fingers to play a single chord! I think cycling is easier for sure.

Anyway take care of yourself and enjoy the blessings of each new day.
Regards
Kevin

[katherineann59]

Hi Kevin,
Thanks for your encouraging words. I wish my job would/could allow me to work at home. Still, I'm going to return to the classroom in 2 weeks and see how things go. If I can't handle it, I will go on sick leave and apply for disability. That will help my health and also allow me to spend more time with my granddaughter. As far as exercize goes, I listen to my body. My doc has not put any restrictions on me as yet. I do know that I have to take it so much easier - no more races for me, I'm afraid. I still run off and on, but I find myself slowing down to walk a bit during each of my runs. I also take a day or two off between workouts if my body tells me to. Swimming is really fun for me and it is a lot easier on my body than running, so I am swimming more. My doc has told me it's important to keep as active as I can, but, again, to listen to how my body responds. Like you said in your post, we have to take it a day, hour, or even a moment at a time, but each one we have is priceless. I hope all is well with you and please keep in touch.
kathy