OT Anyone else deal with lymphoma?

Got the diagnosis just about a week ago. CT and MRI agreed on malignant lymph nodes. Also retroperitonel mass in abdomen. Biopsies today, using the needle and cut to sample. I'm supposed to hear by the end of the week what flavor of cancer I'm going to fight.
Anybody else deal with this? Expectations? I did some searching on the .net, but wondered about any first hand accounts.....
TIA

I got nothing to offer but best wishes and good luck
Keith


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Likewise, I know nothing about it, but I wish you well!

eaglemike said:

Got the diagnosis just about a week ago. CT and MRI agreed on malignant lymph nodes. Also retroperitonel mass in abdomen. Biopsies today, using the needle and cut to sample. I'm supposed to hear by the end of the week what flavor of cancer I'm going to fight.
Anybody else deal with this? Expectations? I did some searching on the .net, but wondered about any first hand accounts.....
TIA

Click to expand...

My buddy was diagnosed about 6 years ago. Had a big tumor removed from his neck and went through a long round of chemo. Cancer free since then. Chemo really hasn't effected him long term either. I wish you the best and will pray for your recovery.

Yes I had Hodgkin's lymphoma about 10 yes back. Don't know the difference between Hodgkin's and non Hodgkin's but best advice I can give is get your self to the biggest hospital in the are with a good reputation you can find. The modern hospital is an amazing place in my case it was Tufts Boston. The place was a human overhaul center with an office specialized in each little piece of your body. I went in with a lump on my neck on Monday was bounced from office to office Monday and Tuesday under the knife wendesday for biopsy diagnosed with cancer Thursday. Started chemo the next Monday it went really fast. I wonder by your post if your diagnosis is going a bit slower than it should and may be a good reason to jump to a bigger hospital if not in a great one already. They are getting so good with the cancer treatments these days that there is no reason not to put yourself in the best of care.

Actual treatment went pretty well they have come quite far with the drugs and that was 10 yrs ago. I had little discomfort from the chemo and the end it was a small 1.5 month blip on the radar for me. Hopefully it will go as easy for you too. I do realize not everyone has as easy of a time and for many the out come is bleak.

The one thing i would wish for anyone going thru such a thing is that you have loved ones or friends who can spend time with them in the hospital. If so try to enjoy it, relax and enjoy getting to spend the time with them. Think of it as being in the passenger seat on an airplane your life is in the captain (in this case your doctor's) hands and there is little to nothing you can do to affect the outcome. So try to find as many ways as possible to enjoy the rest of the flight and hope you land safely! In my case I haven't spent so much time as I did with my parents as I did during that month and a half, not because we don't all love each other but just because life is busy. I still remember dad and I cracking all sorts of jokes, laughing hysterically with Mom looking like she was ready to faint and the nurses looking at is like we were crazy. I just figured it was all out of my control so why not enjoy as much as I could! I am real glad I did as I have a lot of great memories of time spent with the family.

One other cool part of the cancer when I was going thru the chemo there were cycles that had you with no energy what so ever. I found the only thing I could do was sit on the couch and sort out all my nuts bolts and screws. I bought these boxes from schaller corp and would get to work organizing then like never before. It was all I had energy for doing but also something I never had time or patience to do without the chemo. It has made a wonderful improvement to the home shop. I can't tell you how much that lifted the spirits seeing how nice the shop got. Figure you are likely going to be out of work or on a wierd schedule now for at least a month or so any opportunity you have to make it more enjoyable go for it.

Hopefully your outcome will be just as good. But remember you have little to no say on whether the plane lands safely or crashes and burns taking you with it. On the other hand you you are 100% in control over how enjoyable the flight will be. Wether it is as much fun as you can make it or the worst moments full of dread and worry the choice is yours. But outcome is not yours to close and you probably won't know for some time.

Best of luck and hope all goes well for you.

Thanks a bunch for every reply!! Adam, special thanks to you!
It's such a shock. Still adjusting.

My daughter in law turned up with non-Hodgkins lymphoma towards the end of a pregnancy that made breathing difficult and was pressing on the aorta. They took her right in, delivered the baby and put her on chemotherapy. So far as we can tell it's gone leaving barely a trace. She bounced back from chemo, had another child and all's right with the world.

Good luck with your treatment and I hope you fare as well.

I have knowledge in this area but I'd prefer not to post online. It's pretty hard to give information about expectations without a diagnosis. PM me if you have questions after your tissue diagnosis and I'd be happy to chat.

FYI on Non-Hodgkin Lymphoma vs Classical Hodgkin Lymphoma: the difference is what type of cell became cancerous in the first place. Classic HL is a specific type of lymphocyte and NHL is all the other types of lymphocytes (even that is a simplification). Both have many variants and naming gets very granular.

Hi Mike,

Sorry to her about your diagnosis. My prayers are with you and your family.

My wife has had non-hodgkins lymphoma for 30+ years. Every 5 or so years it raises its ugly head and the doctors at UCLA come up with some drug/pill/radiation/surgery that puts its in temporary remission. Her last cancer diagnosis was 2 years ago and they placed her on a new pill (no side effects) that has put her cancer in remission, once again. PTL

We are living in a very dynamic time of medical innovation. In spite of our complaining about high drug prices the drug companies are preforming modern day miracles of drug innovation. Some drugs are so effective the FDA fast tracks them.

A good cancer center/hospital will have a large pallet of different tests and treatments. Your doctors will try out various combinations and find something that will work. Be patient. Read up on your exact diagnosis, keep a journal, ask questions and write it up in your journal. Get a monthly calendar and record hospital and doctor dates. It will come in handy when everyone asks about what has been done and when.

Keep a up-to-date list of medications and any side effects. Get the name of every drug/pill they give you and dosage and for how long you take it.

Lost

adammil1 said:

One other cool part of the cancer when I was going thru the chemo there were cycles that had you with no energy what so ever. I found the only thing I could do was sit on the couch and sort out all my nuts bolts and screws. I bought these boxes from schaller corp and would get to work organizing then like never before. It was all I had energy for doing but also something I never had time or patience to do without the chemo. It has made a wonderful improvement to the home shop. I can't tell you how much that lifted the spirits seeing how nice the shop got. Figure you are likely going to be out of work or on a wierd schedule now for at least a month or so any opportunity you have to make it more enjoyable go for it.

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From personal experience I can say this is very good advice. I made a small toy boat of a piece of wood, using chisel and knife and paint. I have almost forgotten my illness but I remember the boat and how happy it made the kids - and myself.
Best wishes, fusker

Sorry about your diagnosis, bear in mind your entitled to a second opinion, worth getting as doctors are very often wrong I've found, PM me and I'll go into that, it's not for here really.
If it turns out positive have a look at mabthera as a treatment, it does work I've seen it myself.
My doctor would be hard pressed to distinguish a low grade infection from lymphoma and relies on an outsourced lab, so getting results checked and double checked is worthwhile imho, it is a difficult to get spot on thing to diagnose from what I've seen.
Mistakes do occur so ruling them is a good plan
Take care
Mark

non H in 1996 treated with CHOP chemo-- mild return in 2005 a bit of radiation clear since. CHOP can be hard on you like any chemo, don't let yourself get run down during treatment, physical rehab will take more time if so. I'm 31 years in feeling fine at 73, met people going strong at 50+ years.

My father had non-Hodgkin lymphoma some years ago. The focused therapy did not work, so they went with regular chemo. The oncologist mentioned "marked reduction" in his last report, which apparently means something on the order of "I can't find any left" as far as oncology reports go. Over 5 years and no return so far.

My father was early 80s at the time, and is now coming up on 92, so clearly not as young etc as many. Chemo was not pleasant, but he came through it OK even at his age. Definitely get the best doctors you can find, it makes a difference.

Good luck with your treatment. Cancer diagnosis and treatment isn't what it was, things have changed.

Regards Tyrone.

Lost my first wife to Hodgkins 38 years ago.
They found lung cancer in me 3 years ago. Had Chemo and rad. March of 2016, I was told I had a year left.
I want my money back assholes!
I feel better now than I have in a long time. Doctors don't know as much as they think they do. Mental attitude is everything. Stress and worrying about it will speed stuff up. We all die!

My father, who lived to be 97, used to say: "what's the leading cause of death?"
His answer; "birth"
Every stinkin' one of us is going to die sooner or later. Once you've got that figured out, it shouldn't bother you. I'm not affraid.
JR

Been there done that. Your in a great location to be sick. Get a 2nd opinion and find an oncologist that you trust and will take the time to talk to you. Hodgkins is very treatable and cureable.

So how did today go?

If I didn't stress it enough the one thing that was so overwhelmingly awesome sight to see to see just how fast the hospital system sprung into gear the moment the biopsy came back positive. The next day I was in meeting with the oncologist and they had already scheduled the surgery to implant a port and were setting up the schedule for me at the infusion center, things came together real fast and there was no time nor need to ask the folks here on practical machinist what would happen next. Other than showing up for the appointments they set for me there was nothing else for me to do at the time but make the most of a bad situation.

I don't know your exact circumstances but hopefully similar is starting to happen for you too, unless of course you are one of those lucky ones who has a cancer that isn't that bad and can afford to wait, but hopefully at the very least that has already been told to you.

eaglemike said:

Got the diagnosis just about a week ago. CT and MRI agreed on malignant lymph nodes. Also retroperitonel mass in abdomen. Biopsies today, using the needle and cut to sample. I'm supposed to hear by the end of the week what flavor of cancer I'm going to fight.
Anybody else deal with this? Expectations? I did some searching on the .net, but wondered about any first hand accounts.....
TIA

Click to expand...

Sorry about your diagnosis!

When I was diagnosed, my doctor gave me some words of wisdom.....Cancer is what you have and it is a suitcase you will carry for the rest of your life, weather physically or mentally........but it is not who you are!

First and foremost like the previous poster mentioned, get an Oncologist you trust and who will talk to you and guide you thru all the treatment options!

I was diagnosed with Non Hodgkin’s Lymphoma in 1999 after I found a lump!
The oncologist that I was referred to by my doctor was excellent, and I trusted him with my life!

The protocol when I was diagnosed was to wait until the Cancer had changed from a slow growing to a fast growing type!

Up until September of 2011, I didn’t receive any treatment or radiation, just pet scans and bone marrow biopsy’s!

Then in 2011 that day had come when the cancer had changed and got aggressive, stage four, I had tumors above and below the diaphragm, needless to say I was devastated!

From September 2011 thru April of 2015, I went thru four different rounds of chemo therapy, several surgeries and radiation with the ultimate goal to have a stem cell transplant and remission!

I had my stem cell transplant from my brother in April of 2015, I have been cancer free since then!

It was a long road, I took one day at a time!

There have been a lot of advances in cancer treatment, make sure if your not comfortable with something in your treatment plan, discuss it with your oncologist and if you have to get a second opinion, see someone who specializes in your form of cancer!

Like others have said, there will be times that you will be too tired or sick to do anything, find little things to keep yourself occupied.....I was able to organize my toolbox and some of my cabinets......

This will be a life changing event, a good attitude and support system, weather it’s friends or family are needed now more than ever......

Good luck!

Kevin

I learn something every day here at PM.

Erie Pa is known as a cancer hotspot.

While I don't have anything as of yet, the OP's cancer has
always hit me as "you've got 6 months".

It is very refreshing to hear these stories, and how "manageable"
this cancer seems to be.

Pretty much same as BSG went through, diagnosed NHL when i was 40. Waited a few years had chemo, again a year later, bone marrow transplant a year later. At that time, one machine in my shop, no kids. Since then a shed full of old machines, 3 boys, 10 and 6 year old twins, went to Afghanistan, left the army, rejoined just recently as a reservist. No trying to say i am anything special, just, as mentioned medical treatments have come a long way. Support and positive mindset go along way. Still lots of living to do! best of luck.