Hip pain

[Warren Rich]

Over the last 2-3 months I have experienced a dull hip and buttic pain. I am on a Celgene protocol that is is similiar to Revlimid but supposed not to have the side effects. I am getting blood every two weeks (2pts). I am wondering if it the pain is caused by the drug trying to work? My Dr. gives me no guidance. The pain is soothed by laying on a heating pad. Anyone else experience something similiar. My last bone marrow biopsy showed 9-10% blasts March 6th 2008. I was diagnosed in Feb. 2006 RAEB 6% blasts. I had a succesful experence on Dacogen for 8 Months. Comments?

[Frankie]

Hi Warren…
Are you talking about a pain that is below your spine….like maybe the pelvic bone?
I have that. The pain pulsates…very painful, but only lasts a short time.
I first had the pain when I started Revlimid. I have it only once in a while now.
I think it is blood related because of the pulsation.

-Frankie

[Mary4Mike]

Hello Warren,

If you have had this pain for 2-3 months and your doctor is not acknowledging it, I would highly recommend you talk to your primary care provider and ask for an xray or CT scan or some sort of investigation into the cause. The reason I am recommending this is because my husband has had pain at the base of his right rib cage, in his back area for the last 3 months. His hemo never really looked into finding an answer. Close to the onset of the pain, he had pneumonia of the right lobe, and the pain was passed off to this. Two months later, still no real interest in finding a cause, we went to our family doctor and asked for a CT scan. He has a large mass on his liver that we are waiting to have biopsied. We have to wait because he is into his nadir from Dacogen. We aren’t blaming anyone for this (except maybe ourselves for waiting so long), BUT you must be proactive in this. 2-3 months with a pain is TOO long.

Please let us know how this turns out for you.

Mary

One last thought…I just reread your post. Could this possibly be related to your bone marrow biopsy test?

[Warren Rich]

It is definitley below the spine in the hip bone , I think.
Warren
My biggest problem now is blood. I need blood but because of my many transfusions I have antibodies and they, the blood bank in Charlotte, NC has to search for it. It sometimes takes 5 days.
Warren

[Jack_dup1]

Warren,
It is very possible that the hip pain is from a past BMB. I will intermittently get the same pain, especially if I’m feeling poorly anyway. I have pain from a biopsy several months ago, even though I’ve had 4 since then. It just comes and goes, sometimes radiating down the leg. I lay on my back with knees elevated and a heat pack. Don’t rule out something else, but worth considering.
Jack S.

[Frankie]

Warren…
I have many antibodies, also….I had so many transfusions. It took 2 days to get a match.
I am concerned about the time it takes for your match. Five days seems too long between the blood draw and the transfusion. I was told that three days was the max.
Please double check this for yourself. There are many here with a lot more info than me.

As for the pain in your pelvic bone, it sounds like the same thing I get. I went years without any pain there and then it reared its ugly head.

-Frankie

[Jo L.]

Mary4Mike – Mary –
That’s awful to hear that they have found a mass on Mike’s liver. I recall you writing about his pain when I was asking about headaches on Dacogen. I hope all turns out OK with the biopsy.

It is so frustrating that we have to press our doctors repeatedly to get the tests done to find out what is happening. What is so hard is not knowing who to ask – our oncologist? our ear/nose/throat doc? our family doctor? the neurologist? and what if they disagree? Sheesh.

Jo

[Mary4Mike]

Hi Jo,
Thanks for the well wishes for Mike. What has been going on with John and the headache situation? Hopefully you got some answers and now have a handle on it. Does John seem to be having a favorable response on the Dacogen?

Thank God for the Internet. It can certainly be a place of higher learning. I have Googled so many things lately and it does help to have the information when you go into these doctor appointments.

Take Care,
Mary

[Jo L.]

Mary,
We’ve still not found the reason for the headaches, other than they occur at a predictable time during his Dacogen cycle, days 10 to 15 after his last treatment. The neurologist thinks he gets headaches because of spikes of high blood pressure, but offers no idea of cause or treatment. Our family doc finally prescribed Fioricet which seems to take care of the headache, but John is afraid of becoming dependent.

He was in the hospital last week for neutropenic fever, his first time in the hospital since starting Dacogen. It is amazing how quickly things can turn around – one day he’s feeling good, doing chores and errands and that night we’re at the emergency room.

Jo

[MNladyslipper]

Warren and Frankie,
My husband has developed 6 antibodies. The worst is the little “e.” It occurs in 2% of the population. They only have two units right now at Mayo and are worrying about his transplant. They said he will need 30 – 40 units. Right now they have slowed his cbc’s to every other week to avoid taking unneccessary blood. They don’t want to transfuse anymore when it drops below 8, but only by symptoms. They hope he can go to 7 without a transfusion. He is only three weeks out of the hospital for surgery for diverticulitis. He restarted his Revlimid on Tuesday. Tonight he is at the emergency room with chest pains! We are concerned about clots or heart. I cannot be there. I just got out of the hospital on Wednesday after a 10 day stay and surgery for a perforated colon. MY God, when it rains it pours!!

[LynnI]

My antibobies antigen E, kicked in after just 3 transfusions. It takes them about 2-3 days at this point to find me a match, the upside is that I am went almost 4 months since my last Tx, time before that it was 3 wks between Tx…and this has been without treatment yet.

Good luck
Lynn

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