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
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frances20411 Zapamania
Posted
Truly sorry to read your message...but I am wondering do you Really Need it???
I have had a couple of experiences wherein I was to have surgery...and I changed
doctors for a 2nd opinion. As it turned out the doctor who recommended the surgery was just $$ hungry. Do not accept one doctors' opinion...then use your common sense (and gut feeling). Weigh the facts. Good luck!!
sharon49391 Zapamania
Posted
Hi Zap
i was diagnosed with PV, Jak2 about 2 yrs ago. My haematologist recently suggested I have a bone marrow biopsy. He said that this would give him a baseline of how the disease is going and would monitor from there. I had the biopsy in hospital with full annisthetic and didn't feel a thing. I guess we have to be guided by our doctors and he seems to know what he's doing.
cheers and good luck with it.
Sharon
frances20411 sharon49391
Posted
I take is baby aspirin and an a phlebotomy when needed. I had a Full panel blood done 2 weeks ago and the panel indicated I am in better
health than my doctor...I have also had 2 other type cancers which are now in remission...so my point is...I would not have a bone marrow
and I am doing very well without one.
marie-jos6518 frances20411
Posted
Hi Frances,
I appreciate your experience, but this disease is serious and some of us believe in traditional medicine. I do think there is good results that can be attained with good nutrition, but I don't think it's a good idea to turn away from dr's advice. I was diagnosed only 3 months ago, I was hoping to stay on Aspirin and phlebotomy for a while, but, in my case, my platelets are out of control and my iron really low. I will listen to my dr to be sure I can grow old with my children and husband. Every person's case is different, I'm happy that you can control your numbers by your way of life, but it doesn't seem to work for me.
marie-jos6518 Zapamania
Posted
Hello,
Had bonemarrow biopsy at my first appointment with my hæmatologist. Local anesthesia only. I did not think it very painful, but then again, I am known to tolerate pain very well. Felt like a dentist appointment, you feel they are doing something, but not really painful.
From what I understand, the biopsy will tell if you have fibrosis in your marrow. I think it is important to know where you are now to measure the evolution.
Marie
Zapamania marie-jos6518
Posted
hi Marie thanks for your reply. I'm just so scared of having it I need to heat from others what their experience was like. Yea, the biopsy will tell if there is fibrosis. I need to know! Zap
ellen68007 Zapamania
Posted
Hi there! As far as the bone marrow aspiration I have have had two done. Along with several other tests. A complete blood count that had to sent away to be analized. After no solid answers and my case was called a "mystery". At that same time I had the bone marrow test that showed that was not the cause. I was then referred to a Hemotologist in London, Ontario Canada. She wanted her very own tests. She repeated the blood work that again had to be sent away for testing. The same day Inwas there she asked me how I felt about repeating the bone marrow test. I didn't have much time to think about it so yes I agreed. I wanted to be 100 percent sure why my red blood cell count was so high so why not? Had it done AGAIN but no pain. I was not put out. A lot of freezing put in. Never felt a thing. Just a bit of pressure but no pain. All done in less than 10 minutes. No biggy. Afternitvwas done my husband and myself went out for Chinese food. Even enjoyed a glass of wine. If I were you I would welcome having it done. Let's face it we want a solid diagnoses. I say go for it. Nothing to loose but perhaps a lit to gain.
Ellen from Canada
Zapamania ellen68007
Posted
Hi Ellen thanks for your reply. I don't know why I have so much fear having this. There are some people who say they have pain for days. So you really don't think I need to be put under? Why am I being such a baby? You are right, I do ant a solid diagnosis. Zap
ellen68007 Zapamania
Posted
Hi Zap I don't think you are a baby. We all are if the truth be known. There is always a fear of the unknown. That is a normal reaction. Once you have this procedure done you will be glad. The bone marrow test will verify a lot. I wasn't jumping for joy knowing it was required for a solid diagnoses. We need this confirmation to allow us to receive the right treatment. In my case that confirmed secondary Polycythaemia. It was COPD causing elevated red blood cells. Now that my COPD is being treated I am doing great. Was also put on blood thinners due to Polycythaemia causing thick blood. The original low dose aspirin was not enough to control this. Good luck and get it done and overwith. Go with what the Hemotologist suggests.
Ellen
frances20411 ellen68007
Posted
ellen68007 frances20411
Posted
ItchyChris Zapamania
Posted
I have had four bone marrow biopsies with more to come. As I have myelofibrosis they are a little more difficult than normal so for the last one I opted for gas and air but unfortunately there was not a qualified nurse available at the time so I did without. I admit that they are not the most pleasant of procedures but they are bearable, try taking your own stress ball and feel free to whimper at the appropriate time. Some people say that the worst part is trying to get into the car afterwards as the seat pads seem to be designed to press on the wound.
ItchyChris
Zapamania ItchyChris
Posted
Hi Chris first of all, I love your name! Thanks for replying. May I ask was your initial dx myelofibrosis or did it progress to this? What meds are you on? I'm thinking Anegrelide (pardon the spelling). Zap
ItchyChris Zapamania
Posted
My original diagnosis was actually Aquagenic Pruritus (itches when wet), this was probably in error but led directly to being reclassified as Polycythemia Rubra Vera so I am not complaining. The Rubra designation was dropped in the late 1990’s to early 2000’s and is now abbreviated to PV. The Myelofibrosis was suspected a couple of years ago when I stopped requiring venesections (phlebotomies) and a new bone marrow biopsy was performed. This confirmed suspicions but also revealed Acute Myeloid Leukaemia (AML) and my life turned upside-down. The AML treatment cured the PV and appears to have stopped the Myelofibrosis so, as I have said elsewhere, I am a bit of an interloper. Incidentally, it only takes 10 days to cure the AML but it takes two years to cure the cure. Anagrelide is not a drug with which I am familiar even though it is an AML treatment, I used to take Hydroxycarbamide (Hydroxyurea) and am now taking quite a cocktail of drugs.
ItchyChris
Zapamania ItchyChris
Posted
Hi Chris thanks for the reply. What was or is your treatment? Did you have a bone marrow transplant? I guess a lot of my fear of the bmb is the results as well as the procedure. This whole disease has turned my life upside down. I'm sure you get it. I'm just plain scared of all of it. It's never far from my mind. Zap
ItchyChris Zapamania
Posted
I had two cycles of chemo then a bmb, the result of which was not good so I was put on the bone marrow transplant list. I had been given three choices, the null option (i.e. do nothing), more chemo (knowing that each one would be less effective that the last) or a transplant (which is not without risk). Today is day 232 (yes we really do count the days from transplant) with the hope of reaching day 730 without contracting anything serious. It does not really matter what the result of ones biopsy is as there are always options and it is better to know what is going on rather than just guessing. How uncomfortable the procedure is, or not, seems to depend on how well the individual takes the local anaesthetic and some institutions offer additional options here as well.
ItchyChris
Zapamania ItchyChris
Posted
Hi Chris wow so you had a bone marrow transplant. I believe you count the days. Why is 730 the number you strive for? You've been on a tough road and I admire your courage. I must sound ridiculous to you about moaning about a bmb after what you've been through. I wish you all the best. Zap
ItchyChris Zapamania
Posted
Why 730 days, because at one year one is far from being out of the woods, but if one manages two years then the odds are much improved for surviving another two years. After two years one can repeat the childhood inoculations and safety should improve to normal levels. What I have learnt is to take each day at a time; if today is a good day then so much the better, if not then it was to be expected. Even after all these years, whenever doctor says “bmb” I respond with “Oh no, not again!”.
ItchyChris
peter98873 ItchyChris
Posted
Your approach to your illnesses is absolutely brilliant bearing in mind the serious problems you have encountered. One must admire your resolve. From all you have suffered you deserve some success. Good wishes and luck for the future.
Peter.
Zapamania ItchyChris
Posted
Hi Chris I understand the counting of days. 17+ years ago I had ovarian cancer. I went through a very tough surgery and then 6 rounds of chemo. After that a blood test marker called a ca125 every 3 months for the first 2 yrs which would denote a recurrence. After 2 yrs, every 6 months. At the 5 year marker your chance for recurrence is greatly reduced. I'm at 17 yrs 7 months. So having this Pv or et or who knows what is mind blowing to me. I have to get the bmb to get a definitive dx. Thank you for your response. I really appreciate the responses from all you guys. I don't feel so isolated and alone. Linda
ItchyChris peter98873
Posted
Thank you for your kind words. I was not sure that anyone actually read my jottings!
ItchyChris
peter98873 ItchyChris
Posted
ItchyChris,
I think you do yourself an injustice when you say your postings aren't read.
I have read your offerings for quite some while but very often they have not needed a response from me, although others I am sure have replied. Most of these are from new sufferers seeking advice or consolation and would not have your many experiences to call upon. Like you I am into the realms of MF now having progressed on from PV but much remains the same in my view. My blood counts have stabilised under Ruxolitinib and most recently my dosage has been reduced to a minimum to reduce the effects of other treatments I need to deal with separate problems which have affected me over the years.
So I am on your wavelength when it comes to recognising just how you must have suffered in more recent times. Take care and I wish you better times ahead.
Peter.