just diagnosed

ttttrina said:

My dad was just diagnosed with non-Hodgkins Lymphoma, stage 3, and is in the middle of his first cycle of chemo. It came out of nowhere; he had just had a pacemaker put in the week before...the doctors could not figure out why he was so exhausted and had trouble breathing for the last couple of months.

He went for a 2nd opinion at Sloan-Kettering in NYC last week, and should get an evaluation and possibly a new treatment protocal end of this week.

It's unfortunate that they didn't tell us what to expect first round. The doctors and nurses were nice, but he was sent home with no clue what next. He was totally exhausted, disoriented, confused, felt lousy, was blown up facially and legs and hands with edema like a balloon. They gave him NO written literature or instructions other than to call if he ran a fever, and lots of little business cards with follow-up doctors to make appointments with. It was a nightmare for me, the adult daughter who does not live with him but cares for him. I woke up the next day and we were both frightened to death because we weren't prepared. The pharmacist gave us wrong information verbally about what to eat, etc. I finally paged the hospital's chief oncologist to straighten out the confusion. He had 6 predisone to take (3 in the morning and 3 at night - with food), 1 Axid before breakfast and one before dinner to help with indigestion, 1 allopurinol after breakfast, senecot for constipation, lasix with orange juice to help with edema, later they prescribed a potassium supplement to counter attack the side effects of the diuretic, neupogen shots for an antibiotic to fight the lost bone marrow (which he now gets injected in the doctor's office because they couldn't get the right needles/bottles of antiobiotic and by the way they cost $1400 for 10 shots!)...he was also given two different sleeping pills, because the side affect of the neupogen is muscle and bone pain, AND tylenol with codeine to deal with pain during the day...it took about a week for us to straighten it all out. This for a man who is never sick and never takes medication until last year (when he had spinal surgery AND a congestive heart failure after contracting Lyme's disease!)...NOw he's coherent and has notes all over to remember what to take with food, without, when, etc. etc.

So be prewarned: ask the doctors to CLEARLY write out EVERY medication, what it's for, when to take it, without or with food, and expected side affects -- do NOT depend on the print-outs from the pharmacy...that's JUST in case you take one pill alone, not a mix of medications!

Ask them to spell out in wRITING what else to expect (confusion, depression, pains, aches, exhaustion, etc.). AT least then you can be prepared. BOTH Of you.

And do not hesitate to call the doctor, even on a weekend or at night.That's what they're paid for. they want their patients to LIVE and it's part of their job. If we had waited to deal with the edema, he could have DIED. If HE had waited when he had trouble breathing, the lymphoma would have suffocated him.

He stops in to see the doctor DAILY and they watch for swelling, fever, etc. At least the first couple of rounds of chemo.

And tell mom she will be tired, exhausted, wiped out, and it's ok. It's part of the healing process, if you think positively.

The biggest stress for me is dealing with my stupid sister who makes like she's doing things, but in fact, it's me, geographically closer, who's doing the foodshopping, cleaning house, doing laundry, straightening out the meds, etc. etc. and keeping Dad on track. He's a fighter, and taking good care of himself, but I'm there for him. So he knows he's not alone.

Hang in there.

reallucky said:

Hi, I had stage 4 cancer when they found it and gave me two months to live. That was 10/95 and I am still here. The doctors will give alot of advise, but the nurses in the chemo lab are the real gems of knowledge. The nurses I had help me with not only ideas about how not to get as sick, but also about foods that will help you through the tough spots. The advances in chemo have been really great since 95. I will tell you my fight was not easy, but happy ending do happen. I wish you GOD speed in her treatments and GOD's peace on both you and the rest of the family.

ttttrina said:

My dad was just diagnosed with non-Hodgkins Lymphoma, stage 3, and is in the middle of his first cycle of chemo. It came out of nowhere; he had just had a pacemaker put in the week before...the doctors could not figure out why he was so exhausted and had trouble breathing for the last couple of months.

He went for a 2nd opinion at Sloan-Kettering in NYC last week, and should get an evaluation and possibly a new treatment protocal end of this week.

It's unfortunate that they didn't tell us what to expect first round. The doctors and nurses were nice, but he was sent home with no clue what next. He was totally exhausted, disoriented, confused, felt lousy, was blown up facially and legs and hands with edema like a balloon. They gave him NO written literature or instructions other than to call if he ran a fever, and lots of little business cards with follow-up doctors to make appointments with. It was a nightmare for me, the adult daughter who does not live with him but cares for him. I woke up the next day and we were both frightened to death because we weren't prepared. The pharmacist gave us wrong information verbally about what to eat, etc. I finally paged the hospital's chief oncologist to straighten out the confusion. He had 6 predisone to take (3 in the morning and 3 at night - with food), 1 Axid before breakfast and one before dinner to help with indigestion, 1 allopurinol after breakfast, senecot for constipation, lasix with orange juice to help with edema, later they prescribed a potassium supplement to counter attack the side effects of the diuretic, neupogen shots for an antibiotic to fight the lost bone marrow (which he now gets injected in the doctor's office because they couldn't get the right needles/bottles of antiobiotic and by the way they cost $1400 for 10 shots!)...he was also given two different sleeping pills, because the side affect of the neupogen is muscle and bone pain, AND tylenol with codeine to deal with pain during the day...it took about a week for us to straighten it all out. This for a man who is never sick and never takes medication until last year (when he had spinal surgery AND a congestive heart failure after contracting Lyme's disease!)...NOw he's coherent and has notes all over to remember what to take with food, without, when, etc. etc.

So be prewarned: ask the doctors to CLEARLY write out EVERY medication, what it's for, when to take it, without or with food, and expected side affects -- do NOT depend on the print-outs from the pharmacy...that's JUST in case you take one pill alone, not a mix of medications!

Ask them to spell out in wRITING what else to expect (confusion, depression, pains, aches, exhaustion, etc.). AT least then you can be prepared. BOTH Of you.

And do not hesitate to call the doctor, even on a weekend or at night.That's what they're paid for. they want their patients to LIVE and it's part of their job. If we had waited to deal with the edema, he could have DIED. If HE had waited when he had trouble breathing, the lymphoma would have suffocated him.

He stops in to see the doctor DAILY and they watch for swelling, fever, etc. At least the first couple of rounds of chemo.

And tell mom she will be tired, exhausted, wiped out, and it's ok. It's part of the healing process, if you think positively.

The biggest stress for me is dealing with my stupid sister who makes like she's doing things, but in fact, it's me, geographically closer, who's doing the foodshopping, cleaning house, doing laundry, straightening out the meds, etc. etc. and keeping Dad on track. He's a fighter, and taking good care of himself, but I'm there for him. So he knows he's not alone.

Hang in there.

I'm 71 years old and in remission of 4th stage lymphoma- yes there is hope- prayer and great doctoring has made the difference. I thank God every day!!!!