One way to survive three cancers

po18guy

I posted this at ACS sister site WhatNext?, so I might as well re-post it here for the purpose of encouraging those who are struggling with a new or existing diagnosis. Bear in mind that I am not Superman - I have received tons of help thouroughout this journey.

For those who are facing a seeming uphill battle, you are stronger than you know. If I can do this, you can certainly do this. A condensed treatment resumé since primary diagnosis in 2008 (PTCL-NOS):
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 tumors, bone marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives.
DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
12/16 Type II Diabetes, Hypertension - both treatment-related.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immunosuppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Coming soon: Extracorporeal Photopheresis (ECP) a type of immunomodulatory treatment to reduce the chronic-Graft-Versus-Host-Disease (cGvHD).

I like to quote Yogi Berra here: "It ain't over until it's over."

ShadyGuy

Very impressive

you are definitely much stronger than I am. Wonderful attitude and approach to your illnesses. I wish you only the best and thanks for being an inspiration to others.

paella

Amazing

Sure sounds like Po but sure looks like Max in photo.  Whatever, it is totally wonderful and inspiring. Almost 8 years of never giving up!!!  Did Max lend you his photo or are you just testing us?  I've been off line for quite a while due to husband's pancan.  I've had 2 maintenence rounds of Rituximab and am about 10 months post Auto Stem Cell Transplant.  Kinda' pooped out but will try to post shortly.

paella 

 

 

paella

paella said:

Amazing

Sure sounds like Po but sure looks like Max in photo.  Whatever, it is totally wonderful and inspiring. Almost 8 years of never giving up!!!  Did Max lend you his photo or are you just testing us?  I've been off line for quite a while due to husband's pancan.  I've had 2 maintenence rounds of Rituximab and am about 10 months post Auto Stem Cell Transplant.  Kinda' pooped out but will try to post shortly.

paella 

 

 

So, Po - you changed you're picture....

....without your bike, I honestly thought your picture was that of Max!  Now that I see the pix more or less together, the differences are a bit more clear...although you guys sure do look like fraternal twins! 

paella

po18guy

Max is da man!

I took the latest pic after Max changed his. Once I'm off of prednisone, we will essentially be identical twins. We have more in common than I thought...

Max Former Hodgkins Stage 3

paella said:

So, Po - you changed you're picture....

....without your bike, I honestly thought your picture was that of Max!  Now that I see the pix more or less together, the differences are a bit more clear...although you guys sure do look like fraternal twins! 

paella

You too

I always mistook you for Angelina Jolie, Paella, so I guess we're about equal !

max

.

Max Former Hodgkins Stage 3

po18guy said:

Max is da man!

I took the latest pic after Max changed his. Once I'm off of prednisone, we will essentially be identical twins. We have more in common than I thought...

Key

If you smile in your pics, Po, people will differentiate us with no problems....

I have looked at my pices over the last 50 years, and am not smiling in any one of them; just aint natural for me.

max

po18guy

Max Former Hodgkins Stage 3 said:

Key

If you smile in your pics, Po, people will differentiate us with no problems....

I have looked at my pices over the last 50 years, and am not smiling in any one of them; just aint natural for me.

max

Further evidence...

...that we are twins separated at birth. I cannot smile for pics - it just seems forced. I smile constantly, but the presence of a lens makes my face go into a seizure!

 

And please, dear members, no comparisons! I am weary of constantly being compared to various celebrities...

...llke Larry, Darryl and Darryl.

Stafford

Hodgkins Lymphoma 4A

I have been cancer free for 33 years now. I have been really healthy, up to the last three years. I am athletic and relatively small man. three years ago I started having hip problems. Eventually I had hip replacement. I read the long term effects from AVBD MOPP and Radiation can cause deteriation of the hip and bone anyone ever heard anything about that. Also I am having unusual teeth problem, I served 20 years in the AF and have m,aintained my teeth preety well. Anyone experience any of these problem. But through it all I`m blessed to be alive . 55 years old and have a 19 year old

po18guy

Treatment takes its toll

Since we are essentially the second generation of aging chemotherapy patients in human history, we are finding out what sort of price we must pay to remain alive. Having had a transplant, I am watching for avascular necrosis, a rather nasty hip joint condition. The Myelo Dysplastic Syndrome is apparently a treatment-related cancer. My teeth have taken a hit and seem more brittle, as two of them have chipped. Immune suppression prevents their repair at this time, and I may lose a few of them. That is life. That is the "cost of living." By the numbers, I should have died in 2008 - much more so in each year following. I recall daily that we must be alive to have complaints. 

Max Former Hodgkins Stage 3

po18guy said:

Treatment takes its toll

Since we are essentially the second generation of aging chemotherapy patients in human history, we are finding out what sort of price we must pay to remain alive. Having had a transplant, I am watching for avascular necrosis, a rather nasty hip joint condition. The Myelo Dysplastic Syndrome is apparently a treatment-related cancer. My teeth have taken a hit and seem more brittle, as two of them have chipped. Immune suppression prevents their repair at this time, and I may lose a few of them. That is life. That is the "cost of living." By the numbers, I should have died in 2008 - much more so in each year following. I recall daily that we must be alive to have complaints. 

avascular necrosis

Po,

After 6 months of R-EPOCH eight years ago, my neighbor, who had had Stage 4 Large-B Cell NHL, had to have both hips replaced. The replacement became necessary about two years after he ended chemo.  He was only 30-something at the time, and his onc told him that the drugs fairly often cause large bone to die.  Perhaps at random, he also got severe shingles at about the same time.

You mentioned the interesting fact that we are toward the end of the "Second Generation" of chemo recipients."    As you know,  the first-ever chemo was developed during WW II (1942 ff) in a joint venture between the Army and Sloan-Kettering Cancer Center.  And it was used specifically against Hodgkins's Lymphoma.  The drug was Mustargen, derived from Mustard Gas, a chemical warfare agent ("NH-2").

Mustargen is still in popular use today against Lymphoma and Leukemia in the US and around the world.  Like many early and modern chemo drugs, it is a vesicant -- blister agent.  When you think about the toxicity of a drug like Mustargen and compare it to, say, Rituxan, the progress is striking.

I like your line about "you must be alive if you have complaints."  It is similiar to mine, which I have used for years:  What is the significance of side-effects if you are dead ?

We get used to receiving these drugs in a hospital, and know that everything has "modern" FDA approval.  It seems anaseptic to us, harmless.

Then the hair all falls out, many people have their nails crumble, they can't eat, they loose feeling in the hands and feet for years, if not forever.  The list is long, very long.   There is no walking from chemo unfazed, undamaged.

Mustargen:  https://en.wikipedia.org/wiki/Chlormethine

max

Max Former Hodgkins Stage 3

po18guy said:

Treatment takes its toll

Since we are essentially the second generation of aging chemotherapy patients in human history, we are finding out what sort of price we must pay to remain alive. Having had a transplant, I am watching for avascular necrosis, a rather nasty hip joint condition. The Myelo Dysplastic Syndrome is apparently a treatment-related cancer. My teeth have taken a hit and seem more brittle, as two of them have chipped. Immune suppression prevents their repair at this time, and I may lose a few of them. That is life. That is the "cost of living." By the numbers, I should have died in 2008 - much more so in each year following. I recall daily that we must be alive to have complaints. 

Mine and yours....

Po I took as my theme song years ago a late 70s or early 80s Doobie Brothers minor hit, Cheat the Hangman.

Listen to it on YouTube and enjoy,

max

dlocwood

po18guy said:

Treatment takes its toll

Since we are essentially the second generation of aging chemotherapy patients in human history, we are finding out what sort of price we must pay to remain alive. Having had a transplant, I am watching for avascular necrosis, a rather nasty hip joint condition. The Myelo Dysplastic Syndrome is apparently a treatment-related cancer. My teeth have taken a hit and seem more brittle, as two of them have chipped. Immune suppression prevents their repair at this time, and I may lose a few of them. That is life. That is the "cost of living." By the numbers, I should have died in 2008 - much more so in each year following. I recall daily that we must be alive to have complaints. 

I had peripheral t cell

I had peripheral t cell lymphoma 8 years of chemo 1st chops then relapse then they tried ICE didnt work I had kiaser at the time and they wouldn't pay for a chemo that did end up working Kiser had me in palatine care, I then went to UCLA and my oncologist put me on folotyn, I don't understand why I am not thrilled I survived. I stopped chemo on my own without the Dr telling me too. I  have never spoke with anybody during or after chemo just wondering how you felt?

po18guy

dlocwood said:

I had peripheral t cell

I had peripheral t cell lymphoma 8 years of chemo 1st chops then relapse then they tried ICE didnt work I had kiaser at the time and they wouldn't pay for a chemo that did end up working Kiser had me in palatine care, I then went to UCLA and my oncologist put me on folotyn, I don't understand why I am not thrilled I survived. I stopped chemo on my own without the Dr telling me too. I  have never spoke with anybody during or after chemo just wondering how you felt?

World view

What I can tell you is that my Catholic faith has shaped me and illumined my journey. Without it, I would have been much closer to falling intp despair. Through this journey, I have come to realize the purpose of my life and I am delighted that I am able to fulfill that purpose. There is suffering involved, but who has not suffered? It is the human condition. Since everyone who has ever drawn breath has suffered, the question is: what do we do with our suffering? Knowing the purpose of, and the use for our suffering makes all the difference. We are wired to desire life, not death. I consider cancer to be the bully who just walked into the room. Since we cannot avoid the confrontation, we stand and fight - even though many of us are not fighters by nature.

We fight for, and because of, those we love - and who love us. Love is the most powerful force on this earth and it requires sacrifice. Love's sacrifice, in the case of many cancer patients, is the suffering which we agree to endure as part of our conscious decision to love.