Forum Replies Created
Hi, Since you are close, you should go to Stanford for a evaul… Dr. Greenburg one of the God Fellows of MDS and his staff can help figure out what is going on. They will work with your doctor….
Hi, Yea we all pretty much “hate” having it. But as my doc said I got another 13 years after my first cancer diagnosis. I have been on Aransp for 4 months and am feeling better. While it won’t cure it at least I am not as bone tired. I was given a time frame of 5 years and I am coming up on 2 years. While I am not happy at having a smaller time frame, I feel that I have been given time to get my life organized and do the things that I have wanted to do and enjoy life to the fullest. I know it is trite but we all can go at anytime… using this time to the very best you can is important.
Hugs and the very best to you.
PS I am very lucky that I live just a couple of hours from Stanford Hospital, that is where Dr. Peter Greenburg is, he is considered one of the gurus of MDS. It was nice to get a “second” opinion.
I don’t have problems with my Arnesp shots…but my blood draws are painful. They are having to use one vein in my right wrists.
A friend whose daughter had to go through daily painful shots for over a year told me about a prescription numbing cream called Lidocaine 2.5% and Prilocaine 2.5%. it needs to be put on an hour to two hours before the shot or draw.
It has made my weekly blood draws much better!
Hope it helps you
Hi Wendy, Have you tried reaching out to the drug company that produces your husband’s drugs…often they will give you a break on price.
Hi Garth, I live in California so I can get just about any dose over the counter. I have used CBD oil off and on for the last 2 years, nothing consistent.
I am interested in the strength and how often.
I was diagnosed a year and a half ago.
My numbers have come up in the past week after 5 Aranesp shots which I started 2 1/2 months ago…w/c and neutrophil finally in the normal range for the fist time in over a year…my HGB is finally 10.4. My r/c count has not changed in over a year 2.79…
I too am very achy which the docs tell me is normal ;(
Want to start taking CBD oil on a daily basis, thanks for any help on dosage.
Hi, How much and what level of CBD oil are you all using? I was diagnosed May of last year… I have been on Aranesp every other week for 2 months…4 injections… Blood tests every week… My hemoglobin has just gone back to 10. my RBC has slowly gone up to 2.72 but my WBC is staying low 2.9… just tired and achy…
totally willing to try CBD oil!!!
Hi, It is a complicated and confusing disease. 11.1 is good! The doctors usually only order Aranesp when one’s numbers are under 10… when it goes low again they will start the shots again. After 2 months I have just gotten back to 10. Hoping it will stay and I get a reprieve!
Good Luck to you and your mom!
Hi, I was diagnosed with low grade MDS…pretty steady 10.0 hemoglobin for the past 10 months…. I’m also in the wait and watch category. the fatigue is really hard. I haven’t been able to find anything to help….just tired of being tired….but your husband and I are lucky to be “stable.”
Hope people can share their secrets and tricks with us.
All me best to you both
Believe it or not I am seeing one of the noted MDS doctors… at a”center of excellence” that does not offer sedation! And even though I have spoken up…. I have been told that the sedation can cause problems??? PLEASE tell me why the same center does their colonoscopies WITH sedation??
Many of us have to have BMBs a couple of times a year!
I find this border line cruelty and barbaric!
Since it is a LARGE “center” I don’t think I can do much to change it, especially if the doctors won’t help!
Has anyone else gone to the MDS “centers of Excellence” and been either denied sedation or given sedation.
If I get enough people saying other centers do offer I might petition the foundation to help get this “rule” changed. Thanks for ALL your input!!!
Are you anywhere near a MDS center? You can also look in the sight for any doctors that specialize in MDS to talk about other meds.
Sending you and your dad love and prayers!
Thanks for all of your input! It sure helps to have people to reach out to!
Hi All, The “limbo” stage can be frustrating….but keep in mind that usually means you have not progressed into full blown MDS…and there is a small percentage that don’t or don’t for years….so it can also be a good thing. Hugs another fellow “Limbo” mate
Thank you for time and answer. I am to have another BM biopsy in the next month. I just want to know if there is much “issues” with holding off on starting the Aransp? I was seen at Stanford. They are the ones who said wait. My local doctor who has a number of MDS says start now.
I am tired and achy most of the time but I am contributing most of that to having to take daily shots of Forteo for serious osteoporosis.
I want to be proactive and do what needs to -can be done. If the next BMB is not conclusive guess I’ll reach out to one of the other centers.
Hi Donna, sorry for the delay in getting back to you….it’s been a crazy 6 months getting all the tests and opinions done so I could make some kind of informed decision.
A couple of questions.. Did you see a hematologist? Have you had a few months of blood tests? And what about a bone biopsy?
I went with Dr. Greenburg and his Fellow Dr. Spinner’s recommendations, to a wait and watch of the MDS and to go ahead with treatment for the osteoporosis. They agreed with my endocrinologist’s recommendation to treat it with Teriparatide, brand name Forteo. In fact I give myself my first injection tonight.
All three doctors who are involved in my MDS, actually called ICUS said that treating the osteoporosis should not cause any problems and that if I didn’t start treatment I was going to end up having the issues you have experienced. It is a little weird to have both….but as I have found you often have to get a number of tests to get to the bottom of a a diagnosis… and with many diseases we will never really know why or how we got them….. All my best to you!
Just a note…. MDS is not curable without a Bone Marrow Transplant. Those of us who do not meet the Bone Marrow Transplant requirements…and there are many… have what is called treatable MDS and can live MANY years with it. It is important to get a second opinion from a doctor or medical center who has good knowledge of MDS. If your second opinion is still confusing do not hesitate to get a third. You can have your records sent to MD Andersen in Houston and they will do a review. Keep on fighting!