Q5 minus

[Doris Flowers]

My husband was diagnoised 2 years ago with MDS and the doctor said he has the q5 minus ad I don’t understand what that means. He has got to the point of getting a transfusion about every 2 weeks. Can you explain to me what the q5 minus is?

[Anonymous]

Hi Doris, Thank you for posting information regarding your husband’s health. Deletion 5q minus is not very common. In this type of MDS, a segment of the 5th chromosome is missing or has been deleted. It can involve any of the following, causing a decrease in the number of cells:

Refractory anemia: a decrease in the number of circulating red cells resulting in anemia. This is very common in Del 5(q) MDS.
Refractory neutropenia: a decrease in a type of white blood cell called neutrophils. When these fall below normal limits, the patient is then considered ‘neutropenic’ and susceptible to infections.
Refractory thrombocytopenia: a decrease in the number and quality of platelets, this is uncommon with Del 5(q) MDS.

I hope our explanation helps.

• This reply was modified 7 years, 8 months ago by .

[Catherine Davis]

I also have Del 5(q) MDS. I was diagnosed about a year ago but according to what my doctor sees in my blood work, I have apparently had it for at least 10 years. I will be starting Revilmid probably next week, with the hope that it will improve mainly my extreme fatigue. I understand this drug has shown significant success with 5q patients. However, I don’t really understand what it does, how it works and what I should expect. Explanations from my doctor were kind of vague, leading me to think maybe not much is known about this drug – only that it does work. Is there anyone out there who has taken this drug and can tell me what your experience is or has been while on it? Thanks

Cathy

[californiagirl]

Hi Catherine: I was diagnosed with -5Q last year, but I figure I’ve had it at least 2 years. I am not transfusion dependent. I only became aware because I was going through my well checks and screening. I was anemic, had a bone marrow biopsy and the rest is history. I started on Revlimid 5 mg x 28 days. I take it every day. Initially I developed a red rash and took Benydryl which alleviated it. I saw changes in my blood values after 2 weeks and recently my blood values are all within normal range after 9 months. Initially my whites and platelets dropped, but then they started bouncing back after 6 weeks. I was worried that my numbers would tank and would need to take infection control precautions to protect myself, but they never dropped to that level; however, I was very careful anyways. Recently, I developed diarrhea to the point that it was affecting my QoL. My doc said it wasn’t Revlimid related, but he was wrong. Someone mentioned bile salt malabsorption due to Revlimid – I showed it to my doc and I was put on a therapeutic trial and never had an issue again after the first dose. If I didn’t have the issue with bile salt malabsorption I would say I have had very little problems with it. I work, golf, and continue to have good QoL. Thank God! Best of luck to you and your journey.

[Catherine Davis]

Californiagirl – thanks so much for your response. It’s good to know that you haven’t had any major issues with the Revilmid. My doctor did mention possible rash at the beginning and the pharmicist said diarrhea is common and to take immodium if that develops. I look forward to getting started and hopefully getting back to some sort of life. Good luck to you also and thanks again for your response.

[B. B. Connor]

I am new to this. I was diagnosed with MDS 5Q minus 4 years ago. I have been taking Revlimid 2.5mg for the past year and a half. My doctor told me he has never had a patient with 5Qminus and never prescribed Revlimid at 2.5mg He prescribes this drug for Multiplemyloma patients but at a higher dose. I was started at 10mg, but had side effects and persistently requested my doctor to lower the dose. I went to 5mg and again had side effects. I am thankful to be on such a low dose now. I do have a few bouts of diarrhea monthly, but can manage with Immodium.
If anyone is on this low dose, please reply.

[Catherine Davis]

Hi Billie – I am also on a low dose of revlimid. I started almost two years ago at 5mg but had too many side effects and felt awful I am now still on 5 mg but take it every other day. I take it continuously with no break. I still have a rash that causes itching but is tolerable and also have my bouts of diarrhea, which I also manage with Imodium.I never tried 2.5 mg and the 5 seems to be tolerable for me. There are just some side effects that will hang around as long as we take it. Good luck and I hope you begin feeling better.

[John Dyer]

I was diagnosed with MDS 5qdel July of 2013 and have been on Revlimid since. The Revlimid has stopped the need for transfusions. The only problem I have had is body aches. Good luck with Revlimid.

[Deborah]

Hi, I have same MDS as all of you, diagnosed in 2011. I was on Revlimid for 3 years. In the beginning, I took 5 mg every 3rd day. Later, i took 10 mg every 3rd day. These doses were settled on after a lot of trial and error with side effects. I had sporadic diarrhea the entire time. Hand tremors were one of the worst side effects I had from Revlimid. After about 2 years, I did mention that I was having loose stool for the last 3 months. Just to be safe, we decided to do a c-diff test. It was positive !!! Don’t write off all of your GI symptoms to the meds!!! You could have something. I believe that the Revlimid had ceased to work at that point and I should have gone off of it. I stayed on for another year until I got so sick and anemic, we all thought I was on the way out. In retrospect, I was also being under-treated. A case of benign neglect. A change of venues and doctors to an MDS Center of Excellence at UCSD turned everything around and I can’t recommend that course of action enough! The subsequent treatment was arduous and unpleasant because I had gotten much sicker by staying on Revlimid after it stopped working. They put me on IV Vidaza…..got a port placed…think I’ve had 20 rounds over the last 2 years. Biopsies show little change from last year and I’m not showing the 5Q Deletion anymore but there are different anomalies now(It may still be there they say….. but it has hidden for the last 5 biopsies if it is) The disease has weirdly stabilized in the White cell lines and gotten much worse in the Red Cell lines. Platelets are still ok. We think I’m at the end of Vidaza’s effectiveness as well. Procrit shots don’t work like they used to either. I am going with transfusions for now and enjoying some time off!! It’s hard to be “in treatment” actively for over 5 years. I had side effects to every drug they gave me and lots of GI issues. Good luck to the other patients starting on Revlimid. I hope it works for a long time for you.

[B. B. Connor]

Thank you, Catherine for your reply. It is comforting to hear from others with MDS 5QMinus. I had to keep asking my doctor to lower the dose to 2.5 mg. I felt the lower the dose, if working, would be less harmful to my body. My doctor was hesitant on the first, second, and third request. But it has been working well for the past year. Next hurdle is my insurance changes September 2017 and we all know how changing insurance companies can be. But God will provide. Blessing to you and the best of health

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