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just diagnosed

trimadsco
Posts: 1
Joined: Oct 2000

Hi, I'm new to this site, and hope that someone might can help.

My mom has recently been diagnosed with non-hodgkins. It appears to be in an advanced stage. She will begin treatment (chemo) in about six weeks. (she just had surgery, so must recover from that before beginning chemo).

If anyone else has had this type, I would appreciate any info. or advice you can give me. There is so much confusing info. out there.

You can email me at trimadsco@aol.com

Thanks,
Tricia

reallucky
Posts: 2
Joined: Oct 2000

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.

looking4help
Posts: 3
Joined: Jan 2001

Thank you for answering my e-mail. It made me feel alot better knowing you had stage 4 and are still here to talk about it. There is a God and I have faith that he will heal my husband, Don. I am glad to hear you are doing better. It gives me hope and God knows I could use all the hope I could get. You will be in my prayers. Thanks alot for your concern. Pam

ttttrina
Posts: 1
Joined: Nov 2000

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.

looking4help
Posts: 3
Joined: Jan 2001

I was really glad to read your letter. My husband was diagnosed with non-hodgkins Dec 27, 2000. It has been so very hard. I was glad to read about the side effects of neupogen. My husband has been in such terrible pain in his bones. We couldn't figure out whether it was from the cancer or the chemo. My husband's cancer is aggressive and in stage 4. Not real sure what stage 4 means. Could you maybe write me and let know what stage 4 means if you get the chance. Also, I feel so guilty. Sometimes I catch myself feeling angry about the whole situation. I know he can't help getting the cancer, but I get so tired and overwhelmed. I have to ask God to forgive me everyday. I try not to take it out on my husband, he is the love of my life. Probably that is why it is so hard for me. I was married before, a terrible marriage, physical and mental abuse for me and my children. Then I find him, he has been God sent to me and my children. It just doesn't seem fair. I have the faith that God will heal him, but I am so terribly AFRAID!!!!! Thanks for listening. I will pray for your dad too.

rshuemaker's picture
rshuemaker
Posts: 4
Joined: Sep 2000

Stage 4 indicates that the NHL has affected more than one major organ or that it is located above and below the diaphram. The specific type of NHL will dictate the treatment protocol. I believe that your faith will see you through this ordeal. I along with many other survivors believe that this disease is harder on the caregivers than ourselves. My wife and I discussed my treatment and prognosis. She was faithfully by my side. Even today as I go to dialysis treatments, she's always checking on me. I really appreciate her concern. Write if I can be of any help. Take Care, Bob

MIKEDG
Posts: 10
Joined: Jan 2004

hell-o there..i was just reading about you and tjhe family...iam a male 57 years old and was told i was the youngest in the contry to have mantel cell lymphonia..and i was in stage 4 with two weeks to live and i went to jonhs hopkins in maryland and was a qinnie pig with experamental drusa and full body radation and a lot of chemo....i hi ow have an imune system of a 5 year old and had to hae all my babby shots and yes i had 9 week of neougin sp white blood cells and yes the leg cramps were terable...but i started to take hydrocodone sp if you have any questions please return e mail......god bless you and your family....its a long road

pingme
Posts: 4
Joined: Mar 2009

I guess your not the youngest anymore. Dad is 57 and was just diagnosed Monday. he will begin Hyper Cvad treatment today inpatient 7 days. Lots of drugs I've been trying to learn about. The Rituximab seems to be the miracle one even though it will give him chills and etc. He's in good spirits considering the three surgeries we've been through in the past month. The tissue biopsy where the node in his neck was removed, the bone marrow biopsy, and then the insertion of his port. He is anxious to get treatment started. That's a lot coming from a guy who wouldn't even take an asprin/tylenol before all of this started in November. The MCL is pretty aggressive. Dad's spleen is pretty hard and enlarged and the same tumor is pressing on his liver. He has constant nite sweats and itching. His biggest complaint is getting hot everytime he falls asleep. I hate watching him go through all of this discomfort but we are hopeful and optimistic. When were you diagnosed? Dad hasn't been prescribed any radiation, bone marrow is 5%. Dad's got Dr's on the Moffitt Team, we live in Titusvile, Florida. Space Coast Cancer Center and Parrish Med. Center are all within a mile of our homes. That's a good thing.

God Bless and Good Luck.

louisesiefert
Posts: 1
Joined: Apr 2001

Hi. I just joined in this web site and read you're message. I was diagnosed with Large Cell Lymphoma when I was 34--7 years ago. I had Chem, radiation and finally a stem cell transplant. I live in Montana where nothing is big and had to go to Seattle for harvest of my stem cells where everything is big. Here you were a person and my doctor was very good,expecially about questions etc. I discovered in Seattle they don't really have time to be as thorough as here and was very glad to have had with me someone who could ask what I didn't and pay attention to the answers. With chemo my brain go alittle fuzzy about things. So I guess my advice is to always have someone with your Mother to listen and ask questions and WRITE down the answers, cause when I got home the thought about things sometimes they were not clear. Also write down questions you think to ask. They will answer you, but the doctors and nurses deal with this everyday and forget its new to us and unknowingly take things for granted as being knowledge that every one know. They are very knowlegeable and helpful if they know you need it.
Good luck with every thing.

kcolton
Posts: 1
Joined: Jun 2001

Hi Tricia,
Iam sorry to hear about your mom. I am a
survivor of Non hodgins and hodgins. I was 37 year old when I was diagnosed. I have been in remission for 5 years. I was diagnosed with Hodgins first and at stag 2a.
After the first set of chemo my lymp nods started to grow again. I was then rediagnosed with Non hodgkins. I was hard at first, but got easer as I found out more information. Go to the liberey and read up and then ask alot of questions. There is no dumb question when is comes to this. Keep asking to doctor questions. The doctor my not know the answer right away have them check on it. As for the Treatment it all depends on what type and if she gets radiation.

If you have any questions or just need to talk I'll be here.

Your welcome,
Kerry

sueie
Posts: 1
Joined: Aug 2000

I also was diagnosed with Non-Hodgkin's
Lymphoma I was diagnosed in 1991. mine was very advanced it had already gone into my bones I am now 47 yrs old I had a bone marrow transplant in 1995 after being on chemo and shots I am now in remission since the transplant all I can tell you is now is the time to really trust in God everyone including the drs. said I was going to die.
So always remember God answers prayers.
Susie

Lisa1
Posts: 1
Joined: Jun 2004

Hi, my name is Lisa and i am a 29 yr old who was diagnosed in june of 2000, i was in stage 4 non hodgkins and had to have a partial hip replacement and back surgery, i went thru CHOPS ( chemo) and 51/2 weeks of radiation. they told me there was no reason for me to get cancer my body just produced it. i know how your mom fills with the surgery and chemo all at the same time b/c that is what happened to me. tell her dont let it get her down and try to keep her mind busy, lots of people gave me journals to write in and i loved going outside as much as i could. it is tough but just keep your faith in God and it will all work out...
Good luck and i will pray for her

supporter
Posts: 2
Joined: Oct 2004

hi tricia, i understand what your going through. its a very scary feeling and its hards to know all the answers... my mother too was diagnosed with hodgkins aswell 2 years ago. believe it or not she made a fantastic recovery and so will your mom aswell. stay postive and both you and your mum dont give up. my trhoughts are with you across the world here in australia....

Dee

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am a 20 year survivor of NHL, one recurrance a year and a half after diagnosis and treatment but now considered a cure after 18 years cancer free. It's gone. I am sorry to hear about your Mum's diagnosis Trimasado, but cancer can be cured and hope and fight and support are three words that she will need big time - as good as the meds she is receiving towards a cure. Yes there is a great deal of misinformation around but stick to sites like this one for information and there is a good 1-800 number in the states for general cancer information and referral which is The American Cancer Society's National Cancer Information Center for support resources. Cancer Information Specialists are available 24 hours a
day at 1-800-227-2345. So that is one reliable resource on top of this site. Also The Mayo Clinic site is always reliable and I am sure that any hospital site that is well known for it's cancer centre will be useful like Dana Farber or The Lance Armstrong Centre. Support you Mum is the best thing that you and family and friends can do. Tell her that cancer can be beaten - keep positive and pray - prayer cured me. Blessings, Blueroses.

mmg0302
Posts: 2
Joined: Mar 2013

My dad was recently diagnosed with Stage 4 Non_hodgkins small lymphastic lymphoma.  He finished his first round ot chemo and overall it went farily well.  He is having some issues with his 2nd round. 

 

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

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!!!!

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