Posted on 11/03/2013 7:14:31 PM PST by Tired of Taxes
This would be a ping list for survivors and caregivers to share information with each other on treatments.
If you are interested in your name being added to this ping list, please post below.
My Father was also diagnosed with Non Hodgkins Lymphoma ten years ago at age 82. It was about a Month after my CLL Diagnosis. The Doctor tried t figure a link between my Father and I, but both of us had no Genetic Markers. It was just a bizarre coincidence being 30 years apart in age.
My Father did one Round of Chemo, four days, four times and that was it. He is 93 now and for all intents and purposes he is Cured of the Disease.
We get a good chuckle out of it because my Father was a raging Alcoholic for 60 Years. He quit drinking cold turkey at age 79 after my Mother passed away. It got worse before it got better. At 93 he is the oldest guy in his AA Group.
I’m happy to hear that your Mother got through it. Hopefully she will mirror my Father’s success. He never even thinks about having Lymphoma and he sees the Oncologist once a Year for a Checkup. So far so good.
As far as my situation, I live in four Month increments, one Doctor Appointment to the next. That’s as far as I plan anything nowadays. When my Immune System collapsed last year it took me by surprise. I never get sick, no fever, nothing. I have been asymptomatic since my Diagnosis which makes my Oncologist shake his head in disbelief. No Lymph Node issues and my Spleen is fine The only issue has been Enemia and right now my Hemoglobin Count is the highest it’s been since my Diagnosis. Not normal, but very close.
A guy I used to work with was Diagnosed with AML. He was in and out of the Hospital for about a Year and he almost bought it two times.
They only found out he was sick when he collapsed at the Daughter’s 9th Birthday Party. Up to that point he had no idea he was sick. He was a really active guy, hiking, outdoor sports, motorcycles, the works.
Thanks for the info on your Treatment. If I need to go that route it will probably be at UCLA. I went to see them after the MDS popped up. I went to Cedars Sinai when I was first Diagnosed with CLL, but this last time they sent me to see an Oncologist at UCLA who is awesome. He is Mr. BMT and he told me he will only do it when there is no other Options.
We really didn’t discuss the BMT process since I am a work in progress, but I left there feeling that whatever we end up doing will be successful.
After all this time I just go with the flow. I told my Doctor that I’m an Actor on the Stage and he is the Writer and Director. He tells me where to stand and what lines to say and them we go on to the next Act..
Of course everything is subject to revision with Leukemia.
I will pray for your continued good health. You have run the Gauntlet and you are still standing, congratulations.
As I like to say, any day above ground is a good day.
I just found out a childhood Friend of mine Passed Away a day ago. My other close childhood friend died last year. Neither of them made it to 62. I figured I would be the first to go in the group when I was Diagnosed ten years ago. Instead, I’m the last man standing. Life is surprising.
Usually what would cause a person to collapse from AML is being very anemic. I needed 3 bags of blood and a bag of platelets when I was finally diagnosed. The symptoms come on quick (within weeks). I have a feeling he was feeling pretty tired, but just chalked it up daily stress. I wrote off all my symptoms as that. I had just started a 3 AM shift, so I thought I was super tired from working terrible hours. My breathlessness - I thought the smoking finally caught up with me! (no I don’t smoke any longer - the first month in the hospital put an end to that!). Gums - time to see the dentist. It was my first time having low back pain that sent me to the doctor who did an MRI and the MRI showed my entire marrow was saturated with hemetolgical changes. That started the ball rolling with blood tests, etc.
But, yea, I think that your ex-coworker just wrote off the symptoms as everyday stuff, which most of us do - until it shuts us down. Not good at that point - our organs need blood. Without any aggressive mutations, one normally does just chemo and an allo BMT is not recommended. Good for him! Life would have been so much easier without a BMT. I could have moved on to a somewhat normal life by now. I could have gone back to my old job, had a vacation laying in the sun right now. It wasn’t the chemo, but the allo BMT that changed my life.
I’m glad you have a positive outlook, as you should! Especially if you trust your medical team. Mine - they are short of walking on water : ) On another note that just popped in my head - while getting treatment, I was looking at some of the nurses that had some extra weight. How I envied them as I knew I’d be losing a ton and realized just how important it was to have a reserve. I’ll no longer complain if I have an extra 10 on me again! So, eat up! lol
Doctors say AML is usually environmental, ie, benzenes, being around heavy duty radiation. Or it can be caused by strong chemo used for other cancers.
I didn’t have a genetic marker that caused the AML, however, the AML caused the FLT3 gene to take on a huge life form of its own. That is the aggressive gene that would usher in a relapse, hense my continual chemo which doubles as a flt3 inhibitor.
Keep that great spirit of yours. You’re feeling good it sounds like. You’re in a good place. Looking forward to getting there in more than spurts.
My Oncologist saw my latest Blood Work and called me at home on a Thursday night and told me to get to the Hospital the next day to start Blood Transfusions.
Even though I had been dealing with my Disease all these years, I probably just got complacent since I always responded well to my Treatments. I just forgot that I was also getting older and your Body can't do what it used to do.
I received Blood and Platelet Transfusions for an entire Month to get my numbers up, then I was back in Chemo. I think I received 14 Units of Blood and 4 Units of Platelets.
To top it off, six Months later I get a call telling me the person who Donated the very last Unit of Blood I received came back to Donate and tested positive for Hepatitis C.
Had to get checked out to be sure I didn't have it, but it sure scared a few people including me. Such is Life, it's always something.
Have to get going. Have a great day.
You needed blood and platelets for MDS correct? CML doesn’t normally interfere with the platelet, so it must have started turning if not already MDS. I’m really sorry to hear that. You know the fatigue with low RBC’s. Now you know what it feels like. And yes, what a scare with Hep C. That is not a complication anyone needs!
Nope, for CLL, Chronic Lymphocytic Leukemia.
My Hemoglobin dropped down from 1150 to 700 in the span of four Months and my Platelets went down as well.
They didn’t even know that I had MDS when that happened. It wasn’t discovered until I did a follow up Bone Marrow Biopsy after receiving my forth Round of Chemo later that year.
That’s when I got the Good News, Bad News from my Doctor.
The information the three of you have been sharing here on this thread is far more valuable than any information in a news article. Your experiences have made you all very knowledgeable. It’s good to see survivors sharing information with each other here. Thank you.
Once I have my prostate surgery, I will update on how it went to include pre-op procedures, and the recovery curve for short and long term effects.
Trebb, please keep us updated. You will be in my prayers. Hang strong. You’ll make it thru!
Tired of taxes. I was hoping no one was too bored of blood cancer chat. You know how it is, geez we become experts in the field, unfortunately. Not used to coming across leukemia patients, especially MDS / AML patients. most people are more familiar with CML, CLL, NHL. So, it was interesting
Good luck with your surgery, Trebb. Saying a prayer again tonight for you and your son. Have a blessed weekend!
I’m really glad that you two were able to share info with each other. I wish more people would do that. I assume others are freepmailing, but sometimes people are looking for info, but no one responds, probably because there are so many different kinds of cancer, and we become experts in only the type that we have (or had).
Have a Blessed weekend yourself.
Please add me. Thank you so very much for starting this.
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UPDATED CANCER WARRIORS PING LIST:
; 2nd amendment mama; AllAmericanGirl44; Armen Hareyan; B4Ranch; Balata; Ban Draoi Marbh Draoi; bayareablues; blueunicorn6; Bob; bonfire; Brad from Tennessee; BykrBayb; Cajungirl; Califreak; ConorMacNessa; cookcounty; Cottonbay; CrystalD; Dacula; dadfly; Dick Vomer; Doomonyou; duckbutt; Eaglefixer; es123409; fatfertile; FlyingEagle; ForMyChildren; foxfield; free_life; freemama; Gabrial; GILTN1stborn; Grammy; Grazie; HollyB; HomersNose; huldah1776 ; Impala64ssa; japaneseghost; Jaxter; jch10; jemckay19; johnsmom; JRandomFreeper; jtminton; JustAmy; kalee; katykelly; Kickass Conservative; knarf; Lawgvr1955; Loud Mime; Lou L; MayflowerMadam; Mears; MrsFlyingEagle; My Favorite Headache; neverdem; njmaugbill; nopardons; Nowhere Man; the OlLine Rebel; PastorBooks; Patriot777; petercooper; redleghunter; RitchieAprile; rjbemsha; SaintDismas; SeaHawkFan; Shimmer1; Smokin’ Joe; Squawk 8888; stonehouse01; SVTCobra03; TexasTransplant; Tired of Taxes; Tolerance Sucks Rocks; trebb; upcountry miss; verga; wgmalabama; wise counsel; xzins; Yaelle
; 2nd amendment mama; AllAmericanGirl44; Armen Hareyan; B4Ranch; Balata; Ban Draoi Marbh Draoi; bayareablues; blueunicorn6; Bob; bonfire; Brad from Tennessee; BykrBayb; Cajungirl; Califreak; ConorMacNessa; cookcounty; Cottonbay; CrystalD; Dacula; dadfly; Dick Vomer; Doomonyou; duckbutt; Eaglefixer; es123409; fatfertile; FlyingEagle; ForMyChildren; foxfield; free_life; freemama; Gabrial; GILTN1stborn; Grammy; Grazie; HollyB; HomersNose; huldah1776 ; Impala64ssa; japaneseghost; Jaxter; jch10; jemckay19; johnsmom; JRandomFreeper; jtminton; JustAmy; kalee; katykelly; Kickass Conservative; knarf; Lawgvr1955; Loud Mime; Lou L; MayflowerMadam; Mears; MrsFlyingEagle; My Favorite Headache; neverdem; njmaugbill; nopardons; Nowhere Man; the OlLine Rebel; PastorBooks; Patriot777; petercooper; redleghunter; RitchieAprile; rjbemsha; SaintDismas; SeaHawkFan; Shimmer1; Smokin’ Joe; Squawk 8888; stonehouse01; SVTCobra03; TexasTransplant; Tired of Taxes; Tolerance Sucks Rocks; trebb; upcountry miss; wgmalabama; wise counsel; xzins; Yaelle
FDA is about to approve first Gene therapy. This is targeting ALL Leukemia, which is a cancer many children battle.
Lemons for Leukemia video about bone marrow donation awareness.
Video from Good morning America.
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