Posted , 11 users are following.
i was dx with Pv about 4 1/2 yrs ago based on blood work and the jak2 mutation. I never had a bone marrow biopsy but am starting to realize I need to have one. Wondering if those of you who have had them were you awake or sedated? What was your experience like with or without sedation? Thanks. Zap
0 likes, 48 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
peter98873 Zapamania
Posted
Hi Linda.
I have undergone this procedure a number of times in the past and on each occasion I received pain-killing injections immediately prior to the biopsy being taken. There is no need to be sedated fully but it should be performed by an experienced doctor. It doesn't take any more than a few minutes and is a controlled procedure. Just have a word with whoever performs the task and voice any queries you may have. It will discard any fears. Sadly, most patients need to undergo a biopsy at some stage but in my view it is nothing to be feared. A lot can be learned from the biopsy. I was always completely aware of what was being done and kept up to date as this was carried out. I have never encountered any pain from this and apart from perhaps a little discomfort afterwards was unconcerned. Of course, my biopsies were in UK with NHS but it ought to be the same elsewhere.
Zapamania peter98873
Posted
Hi Peter once again thanks for replying. I has many surgeries including brain surgery, many years ago. 1994 to be exact. And yes, of course I had fear,but I did it and it was easier than I expected. However, this bmb procedure is spooking me. I don't want it done @ the Drs office. I've made arrangements today to have it @ a surgical facility. I will be getting versed and fentanyl They say I'll be in a "twilight" type condition. I'll be going for it the middle of this month. I of course I don't want it but I know I need it. So I'm gonna bite the bullet and do it. I think I'm just sick of being sick if you know what I mean. My dance card is full of Drs appts and it can get overwhelming. Linda
peter98873 Zapamania
Posted
Peter.
frances20411 Zapamania
Posted
Prayer. I fully trust in prayer and I personally contribute my healings many times
to that. It relaxes one and you personally know that someone Greater than you
is helping you... My prayers are with you..have faith..it does heal.
Zapamania frances20411
Posted
Hi Frances thank you for your msg. Although I am not religious, I do believe in prayer. And luck. I've had 2 very serious conditions in my life. The first was brain surgery in 1994 and I sailed through that. The second was ovarian cancer in 1999. I had the surgery and 6 rounds of chemo and haven't had a recurrence since then which is extremely rare. Now this. I guess I'm weary. When's enough enough? I'm exhausted both in mind and physically. Thanks for thinking of me. Linda
madhavan94366 Zapamania
Posted
I got admitted for hypertension with no history earlier my Dr's ran all tests on me all came out to be negative.Incidentally they found a high hemoglobin and hematocrit and rbc values .They suspected I might have PV which was a shock to me.They suggested me to see a hematologist.who ordered instantly a bone marrow biopsy and a phlebotomy my numbers were brought to normal.My bone marrow biopsy revealed nothing and it didn't suggest a myeloproliferative neoplasm.Though I was relieved for a week. My blood was normal after a month I did another blood work which showed a slightly increased rbc.I also did a Jak2 Gene test which came out to be negative.My Epo was also 5.66 I am from India and it seems we are not aware of this disease very much. My spleen was also reported to be normal.The last one month has been the .worst experience of my life. Is there any other test which could confirm I have this disease ? Please help me.
Zapamania madhavan94366
Posted
Hi, it seems to me you have all the bases covered. Bmb - normal, Jak 2 mutation - negative. It doesn't sound like you have an MPN to me. As far as your hypertension goes, that's usually involving your kidneys. I would think you do not have an MPN. Be thankful. I'd take your test results anytime. Zap
BobbyO Zapamania
Posted
Zapamania:
I had a bone marrow biopsy 2 days ago. I chose not to be sedated. Before I had the procedure the doctor
explained the procedure in detail. This was done in his office, lying flat on my stomach, and I kept my
clothes on; he just moved my clothing to create an adequate open area. He marked and numbed the
area...numbing is important, and he did a good job. The first procedure was aspiration where he incerts
a probe through skin and into the bone. He then removes 2 liquid samples; the first took a quick sample,
and the second lasted a little longer ( 8-10 seconds). He said I would experience some pain and discomfort
in the right rear and down the leg which I did. But it didn't last long, and it wasn't super bad. He then went
deeper into the marrow and drew out a core sample. Surprisingly I didn't feel pain, only pressure. He
applied a pressure bandage, had me sit up, and drink some juice. Shortly thereafter I left. Afterwards
there was very little soreness in the probe area. The actual location of the probe was lower right rear
below the belt line. I hope this helps.....good luck with the procedure and results.
BobbyO (USA)
Zapamania BobbyO
Posted
Hi Bobby well it sounds like things went very well for you. Just the fact that you said liquid is good, cause some people have so much bone marrow damage, they can't get much out. I had mine under sedation in March. It confirmed ET, when I was originally dx with Pv. Hope your results are good and thanks for your detailed description. Good luck. Zap
BobbyO Zapamania
Posted
Zap:
When I sent this i didn't realize that you already had the procedure. My situation is still a mystery....
Jak2 negative, secondary causes negative, symptoms include extreme weakness, light headed,
persistent headaches, shortness of breath, chronic itching. HCT 53, HG 18.4, 3 sporadic phlebotomies (at my request), changed doctors. He is increasing my phlebotomies to get
me under 45 and my biopsy samples have been sent to the Mayo Clinic lab. Should know more
in 8-10 days. Thanks for your encouragement.
Bob
Zapamania BobbyO
Posted
Hi Bobby wow, you're a mystery for sure. Your hematocrit is really high. What's your platelets? EPO? You have all the symptoms of Pv. Glad your biopsy samples are being sent to the Mayo Clinic. Are you on low dose aspirin? Well, if it's secondary, and the cause is found, you won't have any symptoms. Please let me know your outcome. Zap
BobbyO Zapamania
Posted
I am on low dose aspirin, recent EPO test in high normal range. I've been cleared on heart, lungs and sleep apnea as potential secondary causes. last week HCT was 52, and the week before was 50, so
it continues to rise after the phlebotomy on July 24th. Platelets are below normal, but have been for
long time. If I recall, normal would be 150-400, and mine stay around 100-110. I don't believe
that I've had the other jak2 mutation test for the 95% of persons who came up negative on the primary test. It's been a long summer.
Bob
Zapamania BobbyO
Posted
Hi Bobby I guess you need further testing. What about the CALr? Did you have that test? I'm assuming you don't smoke. I've read about quite a few people who stopped smoking and everything went back to normal. And your platelets are low! I hear you about the looong summer. I'm going to Cornell in a few weeks to see Dr. Silver. I am on Jakafi but am curious about Pegasys. This sure is one long continuous mysterious grind. And nobody gets it. Cause we look "normal". Hope you find your answer. Zap
BobbyO Zapamania
Posted
My previous doctor was very non-aggressive. The tests pending now should be more revealing.
I'm a non-smoker, 79, very active, with a strong heart and no lung issues. I had a CT scan from the lower abdomen to the top of my head....all clear. We had 5 children, and now have 12 grandkids and
5 great grand children....a lot to live for. I'm banking on the Mayo Clinic to give me the answers.
My wife is 78 and in good health and very supportive...we've been married 58 years. One other little
issue....I had an early stage tumor removed from the colon last summer (June, 2016), and my
hematocrit was 44. It then began to gradually rise until it hit 53 in Feb of this year. It's been a
roller coaster ride ever since. Not familiar with "Pegasys".
Bob
peter98873 Zapamania
Posted
Hi Linda,
I have followed all the recent postings on this site and it just goes to prove just how variable PV in its differing guises can be. This is something I have always maintained and given the many differing effects of both the disease and its treatments shows the problems facing both patients and doctors in making the right decisions on the way forward. As a patient one has to be careful not to assume that what suits one is good for us all because this surely is not so. Each patient needs separate medical appraisal on their known statistics and that each persons treatment must be individually directed towards that patient. Consequently it is often difficult to compare symptoms and treatments that people receive and offer suitable accurate advice. I am sure you will concur with this particularly with your experiences of PV and other serious illnesses. We are regularly asked to provide information and advice on our experience of dealing with MPN's which in many instances would be better suited if patients were first to contact their medics beforehand when many of their worries could be put to rest. I feel that much of this uncertainty arises from the rarity of these diseases which are little understood generally and under publicised as well which makes it difficult for people to find the information they need. It is good to realise that we can assist sufferers in their quest for help simply by reason of our practical experiences in this area over a long period and that much of it is fully appreciated. However, I think that much concern could be avoided were patients to make a better first use of the advice and assistance from their specialist doctors when possible but I know that this can have its drawbacks as you only too well understand. On a more personal level after many years my levels have now been stabilised and I am hoping this improvement is going to be maintained for it makes life so much more enjoyable. Hope to hear about your Sept. results Linda. Best wishes.
Peter.