Ping List for Cancer Survivors & Caregivers (Vanity)

Nov. 3, 2013 | Tired of Taxes

[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.

[Tired of Taxes]

Your family is in my prayers tonight.

I hope you receive a response to your question.

[HollyB]

Trebb, I’m sorry both you and your son are suffering with cancer. I pray treatments give both of you many good years ahead. You will be in my prayers.

[Bob]

Please add me to the list.

I was diagnosed with lung cancer in December 2015. Had a right side lower lobectomy (no, it was not a lobotomy) in February; radiation on my left lung in April; chemo in June/July “just in case something’s still left”.

I had my PET and CT scans last week and I heard the most beautiful two words from my oncologist — “cancer free”. I’m going to be getting scans every three months from here on out. Hoping and praying for continuing negative results.

[Kickass Conservative]

Please add me to your growing list. To paraphrase Donald Trump, this is the story folks.

Diagnosed with Chronic Lymphocytic Leukemia at age 52, just over ten years ago.

During that time I have had four separate Chemotherapy Schedules consisting of four to six “four day” treatments lasting three Months each.

My last Chemotherapy Schedule was in 2014. For the first time in ten years, my Oncologist declared me in Remission.

Of course there was a Caveat. The post Chemo Bone Marrow Biopsy found that I acquired a second Blood Cancer called MDS, Myelodysplastic Syndrome which can lead to Acute Leukemia. Must have been a BOGO Sale and nobody told me.

MDS is linked to the use of certain Chemotherapy Drugs, but the Doctors treating me have theorized that I may have always had it but the extensive CLL involvement in my Bone Marrow may have masked it all these years.

Last Year I got a severe Lung Infection lasting four Months. Apparently my Immune System took a vacation and I acquired Pneumonia, a Staph Infection and a few other icky things. After five different Antibiotic Treatments that accomplished almost nothing and a Lung Biopsy, I ended up receiving Plasma Infusion Therapy which seemed to do the trick.

That was the closest I’ve been to buying the Farm since the adventure began, but I’m still kicking.

[kalee]

Praying for your son and for you.

[trebb]

Thanks so much for the prayers. My wife and I are always in Gods;s hands and on the day we put me in the doctors hands, we will also say a prayer that they reside in God's hands with us during the procedure.

We have reason to be very hopeful at this time and I will tr not to let all the "potential issues" rip through my mind - did enough research to know that the scheduled procedure it the recommended way to go to get rid of the cancer and that the odds are good - trying not to contemplate a "long-shot" problem. I'm sure your prayers will sound sweet to His ears as He piles them in front of His throne with all the prayers ever sent His way (and I am sometimes proud because Iv;'e saved several dozen Birthday cards from my kids over the years....Ain't He AWESOME!

Well, back to being the "blunt tool, dit-wad trying to get others to stop playing Tokyo Rose for the election and to encourage them to donate.

[katykelly]

Prayers for you , your son , and all your loved ones .

[HollyB]

With regret, You’re a veteran at this now. But, I remember after my diagnosis while in the hospital how much faith I had in my doctors. I felt like a patient in ‘House’ or something the way they came in groups. They were so amazing. They said I responded in the top 2%. I don’t know what causes some to respond and others not. This disease, cancer, causes so much havoc. It truly turns lives upside down in every aspect. So, know that even when you don’t feel it, even on days that you can’t pray, others are carrying those prayers for you. Christ is not going to forget because you feel discouraged. He is there and will carry both of you everyday. Just as you would never forget your own child and what he is going through. You are his, always.

[Tired of Taxes]

“Cancer free” - those are beautiful words, indeed.

Welcome aboard, although I’m sorry that anyone ever has to join this list.

[Tired of Taxes]

You have a good sense of humor, and that’s important. :-) Welcome aboard, although I’m sorry that anyone ever has to be here.

[Tired of Taxes]

Welcome to newest members, Bob and Kickass Conservative. (See posts above.)

CANCER WARRIORS LIST - LATEST UPDATE:

; AllAmericanGirl44; Armen Hareyan; B4Ranch; Balata; Ban Draoi Marbh Draoi; bayareablues; blueunicorn6; Bob; bonfire; Brad from Tennessee; BykrBayb; Cajungirl; Califreak; ConorMacNessa; cookcounty; 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

[Tired of Taxes]

Welcome to newest members, Bob and Kickass Conservative. (See posts above.)

CANCER WARRIORS LIST - LATEST UPDATE:

; AllAmericanGirl44; Armen Hareyan; B4Ranch; Balata; Ban Draoi Marbh Draoi; bayareablues; blueunicorn6; Bob; bonfire; Brad from Tennessee; BykrBayb; Cajungirl; Califreak; ConorMacNessa; cookcounty; 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

[Kickass Conservative]

It's the only way to be.

FReeper Jeff Head has been an inspiration for me. He has gone to hell and back dealing with his Cancer. I always made a point to follow his journey. He is very gifted in recording his experiences and sharing them with us here.

My Late B-I-L fought Esophageal Cancer for over five years. I was with him every step of the way and watched him endure things I doubt I could have dealt with.

Watching those two guys made dealing with my Leukemia a piece of cake. I'm the luckiest guy walking.

Now I have a Cousin who was just diagnosed with an aggressive Lung Cancer. At first her Doctors told her it looked hopeless, but she found a Cancer Clinic in Florida that refuses to just give in to it. She has had Radiation and Chemo and it looks like the main Tumor is shrinking.

Cancer touches everyone at some point, either directly or indirectly. We live in an amazing age where Cancers are being aggressively treated rather than just being assumed to be a Death Sentence.

If I was diagnosed ten years earlier than I was, I probably would have been long gone by now. Some of the Drugs that I received didn't even exist back then.

That is why I love Big Pharma, they saved my Life.

[HollyB]

Hi kickass. I’m sorry your suffering with MDS. Hopefully it will not progress to AML. I was diagnosed with AML a year ago. Went thru the induction and consolidations and had a bone marrow transplant. I’m FLT3 so there wasn’t much way around not having the BMT. I would have just kept relapsing.

Have they started you on any chemo - Vidaza? I’m hearing good things about it these days? After my BMT I have continued on a 5 year trial of Sorafenib. Made for kidney/ liver cancer. But inhibits the flt3 gene.

Sorry you are going thru this. Not many know much about acute blood cancers. But, it sounds like you must.

[HollyB]

Awesome!! Said a prayer you will continue with clean scans! Blessings!

[trebb]

Thanks so much and bless you for the prayers. 38 days until the surgery and I am a prime example of one who believes in God but who allows the human side to worry even as He hears my own prayers.

Too many blessings to count - here's hoping He decided I still have a task or two to perform in His name.

[trebb]

With regret, You’re a veteran at this now. But, I remember after my diagnosis while in the hospital how much faith I had in my doctors. I felt like a patient in ‘House’ or something the way they came in groups. They were so amazing. They said I responded in the top 2%. I don’t know what causes some to respond and others not. This disease, cancer, causes so much havoc. It truly turns lives upside down in every aspect. So, know that even when you don’t feel it, even on days that you can’t pray, others are carrying those prayers for you. Christ is not going to forget because you feel discouraged. He is there and will carry both of you everyday. Just as you would never forget your own child and what he is going through. You are his, always.

Thank you so much for stating the reality without "extra sprinkles". I have many praying for me and sometimes I get a little emotionally overwhelmed and have to take a breath and allow them to pray for me.

On the day of the surgery, I will pray with my wife and remind us that I am always in His hands and to pray that for a short while He also carries the medical team along with me.. Hoping to have an "endearing quip of my love for my wife on my lips as I come to in recovery and see her face....it will help relax her from being so long in "rock" mode.

God Bless

[Kickass Conservative]

Right now the MDS isn’t an issue. It will be at some point, but so far so good. There is no Genetic Mutation that caused my original diagnosis for CLL, just dumb Luck.

The MDS is only compromising about 10% of my Marrow right now and it isn’t too aggressive “yet” so we wait and see. It isn’t a matter of if, it’s a matter of when.

After my last Chemo for the CLL I was informed by my other Oncologist at Cedars Sinai (part if their BMT Team) that I will probably never need Intravenous Chemo to treat it again.

Apparently there are some new Oral Chemo Treatments that are very effective for CLL, so some good news with the bad.

Thanks for the info. I’m glad you got through the BMT well, it can get pretty hairy. A friend of mine was able to do Autonomous BMT to treat his Lymphoma. Was your Donor a Sibling or did they have to find you a matching Donor?

I have one older Brother who is almost 70 and he actually is a close match. The odds are only 25% and the people at Cedars couldn’t believe it since he is my ONLY Sibling. I know a guy with six Siblings and none of them matched.

If he is still around when it comes time for a BMT I should be in good shape. Might have to do a Walt Disney with him. My Brother’s Wife had a chuckle when I told her that but my Brother wasn’t too amused. LOL

[HollyB]

Thank you for updating me on your CLL and MDS treatment. My mother had Non Hodgkins Lymphoma about 10 years ago. She did intravenous chemo. Her doctor said should she ever relapse (God forbid), they would use oral chemo pills instead. Treatment for Blood Cancers is starting to take off and the options are broadening.

Currently with AML, the same treatment has been used for 40 years! it's 7+3, inpatient. 7 days, 24 hours a day of one chemo intravenously and then 3 days of injection of another (Cytarabine & Idarubacin) Then it's followed up by consolidation which is monthly of 5 days inpatient of chemo. Only larger hospitals treat AML, so keep that in mind. I had an allo/donor transplant. My sister was my donor and was a perfect match. I've had very little GVHD, except for my eyes which is very blurry.double vision quite often. About to see the opth about restasis. Recuperation from the allo transplant is hard as you become a bubble girl/guy for a long time. The difference with allo SCT/BMT is the chemo is pretty harsh and then the usage of tacrolimus (transplant - immunesupprent drugs) I can no longer go into the sun without full coverage - forever. No more pink cheeks, whatsoever. There are many other restrictions as well. Fungal infections are a big risk. So, I'm still on a host of prophylactic medications. Considering it all, I'm doing well - had pneumonia once. Neurapathy and fatigue are never ending.

I wanted to talk to you about MDS. Should it turn to AML, it can be a bit aggressive. AML is only treated at specific larger hospitals inpatient. So, it's not treated at a local chemo center. So, you may want to think about good teaching hospitals in your area or MD Anderson should you ever need to go that route. It seems that many MDS patients on the forums are using Vidaza and it is helping them a lot. I pray you never need a transplant. The chemo was very potent, enough to kill the entire bone marrow. I don't think they use alto for MDS turn AML. Just keep in mind the symptoms I had before I was diagnosed was serious hip and leg pain, breathlessness, fatigue, bleeding gums, and flu’ish feelings. But, the hip-leg pain was so unusual that it will catch you off guard. Almost all AML patients seem to get it - at least the ones on the forum.

[HollyB]

Oh the wild thing about an allo BMT is that the recipients blood type changes to the donors type. Not only that, but when they do the bone marrow biopsy, the chromosome will change from XX to XY or visa versa if a male / female donate to one another. Nothing changed for me because my sister and I already had the same blood type and were both female. Crazy stuff, eh? I suppose a small price to pay for getting a second chance at life. Some who had allo BMT from the bone marrow registry are having a hard time getting DNA information from the ancestery - from spitting. apparently, the donor is messing things up!