Bone Marrow Biopsy results
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Hi Julie,
Sorry for getting to your post so late, apologies! I am sorry to hear this latest news from you and everything that you are having to deal with again. Yes it is a kick in the gut so when I give you a hug it will be a gentle one this time! Thinking of you as always and keeping my fingers crossed for you as always.
Hugs,
Gavin
Brigitte,
Wow…..l would LOVE to have that many grandkids, but with only one son, I don’t think that will happen. I think they’re done with two boys. LOL I am very fortunate to have them…and for them to be close to us though. It’s very special to us that the little boys “want” to spend time with us and ask for special days at our house. Whenever they are sick though…..we have to make do with Facetime and that will probably be more the case as time goes on with this MDS thing.
No word here yet as far as the cytogenetic tests from the bone marrow biopsy, but, my platelets actually rose 9000 points last week, so I breathed a little easier knowing that they weren’t going further down. The news could still be not good….but having the local, weekly blood tests has helped me emotionally, anyway.
I will be praying for that ablation for you in January. If you can get it done….by all means…I would go for it. I had it done on the last recurrence in August and am so glad now that I did that instead of more chemo. Even my surgeon said to do it instead of a resection….as it would save more of the good part of the liver. And….recovery from the ablation was very easy on me. Some people have more pain….but mine was just for about 24 hours ….two days after the ablation and it resolved very quickly. In general, it hurt when i coughed…or breathed in deeply . I’m sure it had something to do with the fact that they are messing around close to the diaphragm .
Right now, I’m recovering from having a big molar extracted (it had fractured under a crown) and frankly, that’s the worst pain I’ve been in for a very long time….right up there with some of the very worst ever. Even numbing agents injected into the gums only worked a fraction of the time they were supposed to work. AWFUL several days before they decided to remove it. That’s the every day “stuff” that happens while you’re sweating the “big” stuff.
But, a week and a half later….and most of the aching is gone…..and thank goodness the awful pain was over after the tooth was gone. There was a lot of talking between the endodontist, the surgeon and my GP about possible bleeding problems due to my low platelet count……but fortunately, my GP gave the go ahead. I don’t know how I would have made it through another night though otherwise.Thanks again….and I will keep you in mind between now and January……hoping the chemo does its thing and gets you to the point that those tumors can be ablated. It really is amazing technology.
Julie
Hello Julie, how are you today? I hope your results come soon and that it is good news. It is good that you have your family, it helps if only to take your mind of worries for a while, I find getting hugs also help. My husband had the best hugs
now I get hugs from my daughter, I also I have a chocolate Labrador who is my companion and makes me laugh and keeps me active. Grandchildren are great! I have 7 of them, although scattered across the world. 2 granddaughters in England, 1 in Maryland and 4 here in Texas (2 boys and 2 girls). My son and one daughter also live in England. I can talk to them every day through Facebook messenger so that helps as well, although I never share my worries with them. I am sort of on a wait and see stage for CC. 2 Small lesions, Gemzar chemo every 2 weeks and the hope of an ablation in January. I hope all goes well for you.
Take care,
BrigitteBrigitte, Thank you for your response. Yes, it does help to hear stories like your husband’s. I have to remind myself that there are always “outliers”…..ie. people who are at the far end of the bell curve….those who do not respond by being the worst case scenario. I am somewhat there as a bile duct cancer patient…..as a sort of “outlier”.
Yes, cancer is a lonely way of life. I can only imagine what is going through the minds of some of my friends and family……..a kind of “cancer fatigue” and now this on top. My family is fairly small…..immediate family is my husband, one son and his wife and two little boys, but they are close to us and when I got the MDS diagnosis my son came over immediately to spend time with me…to listen….and then…to regale me with stories about the little boys, which always lifts my attitude.
Tonight….as crappy and tired as I feel with the recently pulled molar (still taking pain meds) and worried about the MDS diagnosis and what the final type will be………I pushed myself to make a chicken fried steak dinner and invite our son and little boys over for dinner. (His wife just left for a trip to Chicago through Sunday). On one hand…..he got a good dinner and help with the little boys (5 and 18 mo) and I got to have them around to take my mind off the medical stuff for a while.
They left….I cried a little….but doing better again.
I so appreciate your post…..thank you for taking the time. It means more than you could know.
Julie
Julie, I can understand you having a hard time with this news, specially after having CC. You Sending big hugs to you and I hope you get your results real soon. Can they rush the test? I know only too well that having cancer is such a lonely way of life even with support from family and friends.
My husband had Essential Thrombocythemia which was caused by his bone marrow not producing normal blood cells. He had to take a chemo pills every day for over 25 years. He beats the odds and lived 15 years longer than what the doctors had predicted.
Not sure if telling you that story helps at all. Keep the faith and stay strong.
Love and hugs,
BrigitteJulie, I already posted on your other post, but wanted to post here too to let you know that I can totally understand why you are having a hard time emotionally. Once again, we care. Keep posting and also let us know how things are going and the results when you finally get them.
Just hang in there.Love & Hugs,
Darlabgmat48
From what I can gather…..the Gem-Cis is not on the list of chemo that are known to cause this disease. I probably fall into a group of people which just get the disease for no apparent reason….other than living.
I have an appt for Nov 30th at Mayo to meet with an expert in this disease, but if the cytogenetic tests show that this is at an acute and serious stage, then they will open up an emergency appt slot to get me in sooner. However, I found out today that the cytogenetic tests will take a week or more longer for results.
So, I have contacted my GP to see if she would agree to test my counts once a week until I get to a Mayo appt ….just to be sure that things haven’t dropped significan’t more.
I’m having a tough time dealing emotionally with all of this right now.
Julie
Hi Julie. I am sorry to hear about your bone marrow results. I hope that is can be managed and does not tun into Leukemia. I do wonder if chemo ends up causing more problems but then not having it is not an option for a lot of us if we want to live a while longer. Stay strong Julie. xx
Last week….Wednesday, I had a bone marrow biopsy to try to figure out the reason for very low platelets and decreased other blood tests. The results (I just found out tonight) are that I have now Myleodysplastic Syndrome….aka MDS. That basically means that my bone marrow is not working right. We do not know the severeity of this yet because the cytogenetic test results they are running have not come back yet…and may be another couple days.
The cytogenetic results will tell them where this is on a linear graph…..from just having to watch counts carefully and have transfusions now and then….to outright leukemia. 30% of MDS patients go on to have leukemia. If anyone knows who Robin Roberts is on morning tv…she had some kind of cancer and then was diagnosed with MDS.. She eventually had a stem cell transplant, but those are not done for the “elderly”….and apparently at age 64….I am elderly. Boo hiss on that on so many levels.
I had hopes that this was a drug induced problem……as I had taken at least 5 drugs that could cause most of the original blood count results. The oncologist I talked with said that it does look like this MDS thing though.
This really feels like a kick in the gut….to have this on top of ICC. We are supposed to hear tonight or tomorrow morning about an appt with a hematologist at Mayo who is an expert in MDS. I don’t yet know if that will be this week or next.
Dang….I thought we finally had the bile duct cancer under control….and now this. I have no idea how this might affect any treatment if the bile duct cancer returns.
I know that there’s very little chance that anyone else on the boards will have to deal with this too, but I will post as I find out more. They do not know the cause of this (sound familiar), but I want to check to see if the chemo may have triggered this. They may not have any answers to that question….but I want to ask.
Julie T.
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