I just found out from my niece that my brother had a bone marrow transplant. Was shocked no one told me. He had melanoma did a trial drug then got lymphoma.I asked who donor was? Said used own Of course cancer came back with a vengeance and was too late. So my desire to use my own right now doesn't look so good! But I don't know if he had genetic testing like me because it is a fairly new thing and not taken too seriously. So without knowing that I can't believe he'd use his own with such an aggressive cancer as melanoma. I knew my paternal uncle had skin cancer but don't know what kind.But if it was melanoma also that means it might be heredity. So since CLL is heredity also I don't think it's a good idea to use my own in view of what happened to my brother. But then can I trust any of my brothers now- only 3 left! Had 6 siblings and now only 3 boys left. Can I trust that they don't have cancer brewing! I am still suffering pnemonitis from zydelig and have to go back to lung specialist because I am not improving. I know I can't have any treatment now because I am so sick. So I am hanging out coughing my lungs out and have to go back to lung specialist because of this.
Bone marrow transplant: I just found out from my... - CLL Support
Bone marrow transplant
Greygirl, I can hear the anguish and worry in your post and my heart goes out to you. There are so many things that are out of your control at the moment and that is hard to deal with. Please focus on getting well from your pneumonitis because that will influence whatever future treatment you have. Take it easy, do what you enjoy and make the best of the situation you're in right now.
Sending my prayers and best wishes for you x
Yeah, found Facebook thru new cancer center and found my relatives also. Have so many. Writing stories about experiences remember. I made the mistake though when one cousin showed picture of son smashing a cake and I related story of cake smashing myself and our favorite birthday cake was rum and said we must have been all little alcoholics and evidently there is an alcohol problem among relatives-they always like to drink a lot to point of getting drunk and that was sensitive spot with her and she said she couldn't have her children hear that So had exclude it. My brother Anthony died of heart attack two years ago was only 57 seems be age to die in my family for the men! Anyway when I was looking to see if his obituary was listed yet I found another Anthony Donato from where my family originated and it said that he was stone drunk and was sitting in front of a bon fire and found him burned to a crisp! His son I believe I have contacted by Facebook and asked who parents are but didn't answer me but sent me a picture of a car he restored. How cute. So I wrote him a story about my father Anthony who took the time to teach me the basics of car engine care.My aunt had told me that my family used do bootlegging with the neighbor family Gambese family- I think he was in prison! Not for bootlegging! Ok enough family history.
Hi greygirl - I don't know much about the science but my feeling is that melanoma behaves differently to CLL, which means that your experience of a transplant could be very different to your brother's. I'm being lined up for a transplant too so I can understand how you feel about the risks. But there is a chance it could cure us.
When's yours? You go first tell me what happens. Are you using own bone marrow,stem cells or someone else's? Have you had genetic testing and at what point did the cell become cancerous? Mine was intermediate stage which I think is better than when first leaves the "nursery".
Hopefully within a couple of months. My lymphocyte count is too high at the moment so they're taking me off ibrutinib and putting me on venetoclax to try to bring it down. I have an unrelated donor but I don't know anything about genetic testing. Thanks for flagging it up - I'm seeing my consultant tomorrow so I'll ask him about it.
I am in hospital now got pneumonia but I didn't think when I stopped zydelig I forgot stays in system awhile and was eating grapefruit!! Anyway my WBC is normal 7.000. But nothing else!
I can't provide much info - many posters know a lot more than I do - but my understanding is that CLL is not 'usually' hereditary - certainly, I don't know anyone in my near family who's had it. So possibly that, at least, should not be a major concern.
Good luck!
CLL certain does run in families in about 8% of cases, and any familial history of lymphomas increases the odds...
Both my sister and I have CLL... Familial CLL occurs in about 10% of cases... but spontanious CLL is the norm.
Familial CLL is also more common in famlies of Ashkenazi Jewish ethnicity from Central Europe.
~chris
Indeed - I didn't, mean to suggest that it never has a hereditary component, but that usually it does not - I'm sorry if that was not clear.
If there is a hereditary component in 8-10% of CLL then 90-92% are spontaneous, as you say - and as seems to be my case.
greygirl doesn't say if anyone else in her family has CLL, so my post was an attempt to let her know that maybe it will not be a specific issue or worry in her case, on top of the other problems. I hope she finds a solution/treatment.
Allogeneic HSCTs can be done very succesfully with matched donors... in CLL it doesn't have to be sibling match...
~chris
When I was watching a Mario Lanza movie I wondered if came from Sicily. Found out his surname, my paternal and maternal surnames are on a list of Italian,Sicilian and Spanish names of Jews who were forced to leave all provinces of Spanish rule or convert and take on non Jewish surnames. I guess decided convert. Anyway the Spanish gov.as way to say sorry is offering people who's names are on the list to acquire Spanish citizenship. Maybe I can get to Italy thru a Spanish passport/ citizenship instead! So maybe got some Jewish blood and the wonderful CLL.Though interesting always wondered why my father did not go to church when growing up and never participated when we went to church. Never found out why. Don't know if my grandpa did either!
My mother is a Sicilian of Jewish ancestors and her mother died at age 53 in 1966. She had leukaemia and only lasted 4 months .. I hope my children or their children don’t get this.no religious people in my family.
I read something about the research they`re doing as to how much heredity has to do with CLL and it was said that each generation it skips gender. In my father`s case he was the only one of his brothers get CLL but his sister had a blood disorder also. But with my sister (she had ALL at 38) and I it proved true- skipped genders. Probably not enough records worldwide to prove this theory.
Read the paper on the original Pedigree 14 study from the late 1940s... it shows the familial diversity of CLL.
This is an update look at it...
Well, my grandfather,father and sister and cousin NHL. Aunt had opposite polythemia Vera. Is that heredity enough? I believe youngest brother is next as he already showed signs earlier than me and was born when my father showed signs of CLL So I don't think I want a donation from him. He also smokes cigarettes since 15. Oldest brother smokes cigarettes and weed Had prostate cancer and treatment so leaves my middle brother only who probably won't be a match!!
Fair enough! Good luck with finding an effective treatment, whatever it may be... more options are becoming available as time moves on.
You've got a lot on your plate at the moment. I hope things work out well for you. Keep us posted.
Peggy
Well, I am in the hospital! I just got worse and worse. I have a secondary infection to pneumonitis. I have to find out what. I am on 2 antibiotics. They wanted to give me cipro and I refused very bad drug. Many people suffered ligament snaps.reported to FDA. I was on a cousin drug and I heard a weird pop when I happened to stretch one morning.Also I had terrible pain in middle of back for which had have chest x- Ray. So made them give another. I am allergic to sulfa drugs from baby. Wonder if still am.
Ok got bacterial pneumonia. My husband around someone sick came home sore throat and cough.Tried blame on my kitty grey. Two antibiotics and want give me steroid. I refused because it is raising blood sugar and making me depressed and paranoid.Also want to give me heparin shots so I can bleed to death like I almost did in another hospital. They said well you need walk around. Really? What do you think I've been doing? I must get up go bathroom how many times? And I tried walk in room but am attached to so many wires how do I do this? I fill up the little Pee tray in one sitting and I'd have call nurse every hour so got tired and emptied it. She got upset and I said oh I fill it dumped twice- really don't remember because of steroid.well, that's all now, folks.
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