I recently took and got back my PET and CT scans (after 4th cycle of DA-EPOCH R). My doctor says I have no signs of the cancer! The scans were clear.
She seemed very encouraged and said this reduces my chance of relapse. I know I am not out of the woods, but this is a great feeling.
I wanted to share the good news with you and hope it helps others that are going through the same journey and feel like there is no hope.
Cowboy
Hey, Cowboy, good for you! I hope your good news continues straight into remission and, five years from now, the magic word - cured. Again, good for you and good health,
kermica
Cowboy!!
You're living up to yer name!!
That's fabulous news! I love to hear news like this!
Peace to all ofus.
Geri
That's awesome news. Glad to hear that you kicked that cancer's butt! I have been going on about 8 months remission now, and I feel a little closer to pre-cancer health every week. Next scan is in December...all I want for Christmas is another clean one.
YEE HAW!!!
I'm doing a victory dance for you!
It seems that DA EPOCH-R (DA R-EPOCH) is the bomb for diffuse large B-cell lymphoma (along with lots of prayers). I only recently started reading this forum, and when I read your posts I felt in my heart that you would be OK. What percent dose adjustment did you top out at? How many more treatments will you receive? My husband topped out at 140%. My husband had his PET/CT scan after his 4th cycle of DA EPOCH-R today and we'll receive the results tommorow :-)
Thanks Andy - Please tell me the anxiety gets better with time? I will pray for your clean scan!
It does get better. We never know what the future holds but my onc gave me some good/simple advice when I was worrying about what foods I should eat or not eat, etc. He told me “just live your life”. So I can honestly say that’s what I’ve been trying to do, and there are days I don’t even think about cancer anymore, if it comes back… I’ll deal with it then. The way I see it, I could be the picture of health and get killed in a car accident on my way to work. Eventually something will knock me off, I might as well just be grateful for the days God has given me and just live my life the best I can.
I’m not telling you that I don’t think about it or worry when I get a sore throat or something, I do sometimes. But less often now than before.
Thanks for your prayers.
-Andy
2Dawn -
How did your husband's scans come out? How is he handling the chemo? the hardest part for me is the hospital stays. Five days is brutal.
I also had scans after the 4th round. I know some are done sooner, but it feels great to have clean scans! I have one more cycle and am not totally sure how was added to my treatment. I do know that my doctor said my dose was the highest she's given.
God bless you and your husband...I will say a prayer for you if you do the same for me ;).
Good for you Cowboy... thanks be to GOD!.... I will be coming up on my 4th Chemo treatment next Wednesday and will be only to glad to say the same thing... I am claiming the victory of this....
Daynal
Awesome Daynal!
2Dawn -
I am curious why your husband is receiving DA-EPOCH - R instead of R-Chop. I see he is DLBCL.
Thanks
CONGRATULATIONS1
Many many congrats for a hard fought victory!
Yes indeed, my prayers are going up for you :-)
My husband's PET/CT scan came out clean also! Three cheers to God and DA EPOCH-R! I started a new post describing my husband's whole ordeal.
Brutal is one on the words I use to describe these 5 1/2 day hospital stints, the other one is grueling... We live 1 1/2 to 2 hours away from the hospital and I have to drive home every other day to take care of the cats which makes it even worse.
He's doing well with the treatment - some nausea and occasional bouts of diarrhea - but less side effects with each cycle. Have your side effects diminished with each cycle also? I thought they would get worse each time, so am pleasantly surprised.
Is your oncologist counting the first cycle of (if I remember correctly) R-CHOP as cycle number one? They usually have you do six or eight cycles. My husband's oncologist isn't counting the R-CHOP (minus doxorubicin) as cycle number one so he will have two more cycles of DA EPOCH-R. As bad as the treatment is I'm glad he'll get two more cycles after the "all clear".
Two of my husband's masses were very large and he will permanently have leftover fibrous tissue from these in his chest. The oncologist is talking about having him do some radiation treatments on the leftover "junk" just to be sure every cancerous cell is gone. I'm almost looking forward to it after the DA EPOCH-R!
Did you have to have transfusions? My husband had to have two units after each of cycle 3 and 4 due to low red blood cells, hemoglobin, and hematocrit. It apppears you received more treatment than my husband did.
Yes I've had transfusions after cycle 7,8 & 9, 2 units each time. My red blood count has slowly improved since chemo ceased in June. I had 11 cycles in total until there was no other chemo combo available. More chemo than most I think. My bloods counts were really hit hard, however,they are just below normal now. Had a magnesium deficiency also(the platinum based chemo was responsible) and had supplements but now good.
My subtype (ABC) can be resistant to chemo from the get-go (primary resistance) , as mine was, fortunately my oncologist did not give up and kept trying different recipes until I got to this trial here at NIH where I now take an oral non-toxic targeted drug. I really want people to know that there are more options available for this resistant type.
Ralph, what is ABC subtype and NIH treatment center?
Thanks for the info, Kathy
This is Joy, Ralph is my husband, he is cooking his breakfast and dictating this to me (plus I am adding my own views!)
NIH is National Institute health Bethesda MD. Diffuse large B Cell Lymphoma (DLBCL)is about 40% of the Non Hodgkins Lymphomas. ABC is a newly identified (very very newly identified)DLBCL. It can be genetically determined by histology from biopsy.
It seems (my lay interpretaion of the research) there are 3 types of DLBCL - Germinal cell, Activated B Cell, and Primary Mediastinal. They now know each has the malignancy develop at different stages of their B cell development/maturity. The germinal cell subtype appears easier to treat. What we now know is that the ABC subtype is more resistant to chemo.
The scientists/researchers have tracked down the point at which the ABC cells ‘misbehave’ and have developed a targeted drug that interferes with the signal to ‘misbehave’. This is (so far) a successful non-toxic oral drug available on this new trial here at the NIH.
They are looking for more DLBCL ABC’s to participate.
Hi Joy, thanks for the info, good job at dictation LOL. I have never heard of that subtype. My first DX was Diffused large B cell but turn out that there were only some large B's present, majority was small cell and re-DX Small Cell Lymphotic Lymphoma. (SLL/CLL) It is amazing how much they are discovering about all these subtypes each day, I think we will all reap great medical advances in the next decade.
Good Luck to you and Ralph, sounds like both of you have been through so much with all the treatments. I hope this one is successful. KBeale
thanks so much and all the best wishes for your ‘journey’
I just want people to know that every day they find out more about cancer - our ‘local’ docs may not be up with it but rest assured there are teams of researchers working on something new as we speak.
We were told more than once that palliative care would be a realistic option but we never gave up on the ‘science’.