Need Help, Hubby just diagnosed with Lymphoma

[suzanne]

We just saw got the results of the biopsy this morning. It shows Hubby has non hodgkins follicular lymphoma - grade 1. We see the oncologist on Thursday to determine treatment options.

Was wondering if any TUGGER has had this type of cancer or knows someone who has that could give us some advice. Right now we are just trying to absorb the diagnosis. How does a perfectly fit healthy man who's never been sick in his life all of a sudden have cancer? It's just all so scary and I am trying very hard to stay positive to keep his spirits up. We could sure use advice and prayers right now.

Suzanne

 

[Blondie]

I have no advice so sending prayers to you and your family.

 

[Aussiedog]

I have lymphoma too

I am so sorry that you have to go through this!

Take a DEEP breath - and now another one - which I know is much easier said than done since right now you feel like you have been thrown in front of a bus.

Over the next few days you should read what you can, ask questions and prepare for a lot of tests. One of the best websites to start your education is www.lymphomation.org

Get at least 2 treatment opinions from oncologists who are specialists in lymphoma. There are SOOOO many treatment options these days.

As you work through the process you will find that this is more like a chronic illness than a death sentence. As suggested above, I am a healthy-as-a-horse-workout-every-day-haven't-had-even-a-cold-in-20-years person who also has non-Hodgkin's lymphoma. I no longer think about it every minute of every day and I know your DH will get through this too. Please PM me if I can help.

Ann

 

[luvsvacation22]

Sorry, I have no advice either, but I can pray for you... May God be gracious to you and bless you and make His face shine upon you.

Isaiah 41:10 " Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." NIV

May God give you hope and strength, give your husband's doctors and medical team divine wisdom and guidance and heal your husband. In Jesus name Amen

I will continue to pray for you and your husband.

 

[Kay H]

I would wait until you see the oncologist and see what his/her options are. I have a friend who has it and his is slow growing. He only gets chemo when the lymph nodes in his neck get enlarged. He is now 70, was diagnosed abput 8 yrs ago and is doing fine. He goes every so often (don't know how often) for bloodwork and that is used in his assessment.

Hopefully the news will not be too bad.

 

[Dori]

Please add my prayers as well.

Dori

 

[suzanne]

Thank you all for your kindness. I have always known TUGGERS were the best extended family one can have. I will check out the website. I really appreciate your posting it and your own personal history with this illness.

Suzanne

 

[Jestjoan]

My friend has it and is trying to get in a new drug trial. http://www.seagen.com/candidates/sgn40.htm

This would be something probably way down the line. I hope your DH doesn't ever need it.........

I know how very hard it is to hear the diagnosis. Hugs and best wishes.


Joan
10 year BC survivor

 

[nonutrix]

Sorry, I have no advice either, but I can pray for you... May God be gracious to you and bless you and make His face shine upon you.

...and give you peace.

Your family will be in my prayers.

Much love,

nonutrix

 

[ctreelmom]

Prayers headed your way.

 

[falmouth3]

Best wishes for you and your husband.

Sue

 

[Htoo0]

My thoughts are with you. I'll be wishing for a speedy recovery. This is not meant to frighten you but the same thing happened to my always healthy father at 59. This was in '86 and I'm sure much has been learned since then. They actually had the cancer under control but he contracted a rare form of pneumonia apparently only seen in cancer patients (due to the chemo) which they misdiagnosed. He should have been on medications to prevent it but the doctors treating him were in unfamiliar territory for them. So yes, learn what you can, get more than one opinion and stay on top of things. They really have come a long way. Best wishes.

 

[cgeidl]

Brother in law doing well

My Brother in law had a hard lump he noticed and it was your husbands cancer type . He received chemo and some kind of expensive shocks. His blood count is low normal and he is able to travel and do farm work. he is very careful not to contact germs as his immune system is not 100%.He saw a nationally renowned specialist after seeing the local on =cologist and both agreed on the diagnosis and treatment.
Lots of luck. We wish you the best.

 

[macko420]

My thoughts and prayers are with you. My mother is in remission from NHL. She only went thru treatment once so far but it has been at least 5 years since she completed the chemo. Someone said it is more like a chronic illness and I think that is a good description of it.
I know how scared you are but I agree, keep asking questions and get a few opinions and then choose who you are comfortable with. The very best of luck to both of you.

 

[e.bram]

Depending where you are near. In New York, go to MSKCC. In Boston Mass General.

 

[pammex]

Can only imagine what you are going thru.....but our prayers from Mexico are being sent your way and a candle is being lit in Mexico to help you ( a tradition in my pueblo).....as a former Bostonian and nurse if you are near Mass General head there!!! Best wishes and prayers!!!

 

[pcgirl54]

Suzanne,

Both you and your husband will be in our thoughts. Read and learn all you can and never let anyone stop you from asking questions.

 

[suesam]

I have a friend who was diagnosed with Non hodgkins lymphoma about 8 years ago. Our state university hospital told her there was nothing they could do and gave her 6 mos to live. She went to a hospital in Omaha, Nebraska for a second opinion. They treated her and she has been cancer free for about 7 years! She goes once a year for check ups and is doing great.
Not sure where you live but if you ever want the name of her Dr. pm me and I will find out.
I will say a prayer for you and your husband, I remember well how terrifying this is.

Sue

 

[neash]

I too do not have advice, but you both will be in my prayers.
God Bless!

 

[Jestjoan]

Sue

Sue, that is an amazing story. We lived in Omaha for about 15 years. I was very pleased with my care through the doctors in the Methodist Hospital System. Creighton U. is good, too. I am totally shocked about Iowa health care. Iowa U. should be good.....

It's always good to be your own advocate on health care. DH and I studied my bc (lobular carcinoma in situ) at the University of NE Medical Library. It was pretty hard to do w/o any medical background.

 

[Jestjoan]

Suzanne

1-800-4-CANCER is a good resource. You'll reach the closest major comprehensive cancer center near you. They can answer questions and send you literature.

 

[Jestjoan]

I found this site in my favorites

http://www.caring4cancer.com/

I think it was recommended by my cancer center but I'm not certain.

 

[Keitht]

My dad had it when he was in his 50's. He required some radio-therapy, but that was all. He made a full recovery and simply had to go back for X-ray once a year to make sure it wasn't recurring.

 

[suzanne]

Thanks to all of you for your help and prayers. We saw the Oncologist this morning. Hubby will have his first Chemo treatment Tuesday morning. The Doctor was very good at explaining what to expect, the drugs he would be getting also said if we had questions, he would do his best to answer them. He said he knew everything was very scary right now, and it was hard to think of questions but at some point down the road there would be many and he would be there to answer them. It made me feel better when he said he would answer any questions, not his staff.

He starts taking a drug called Allopurinol tomorrow morning. He takes it for 30 days. I is supposed to prevent the uric acid from causing Gout when the cells start dying off from the Chemo drugs. He will also have to take Prednisone for 4 days starting the day after the Chemo treatment. He will take that one after each treatment for the four days. It is part of the Chemo drugs he will be taking. He will have Chemo every three weeks for approximately 4 to 6 treatments. Then he will have another PET Scan to determine how well the treatments are working.

He also told us that while the type of lymphoma he has is not curable, it is very slow growing and it might as well be as the drugs are so good at keeping the cancer under control. He said most people go into remission and remain that way for 5, 10 even 20 years before it starts to produce symtoms again needing more treatment. He said the other type is curable, but fast growing requiring immediate treatment including drugs, chemo, radiation and sometimes surgery. He said of the two types Hubby's is the most easily treatable.

I will let you all know how it goes. Thanks again for all your prayers.

Suzanne

 

[wackymother]

Suzanne, here's hoping all goes well in the days to come. I don't have any advice, but I'll be sending positive thoughts to you and your DH.