Anyone with a child who has Hodgkins Lymphoma

My 14 year old son was diagnosed with stage 3 hodgkins lymphoma 2 1/2 weeks ago. We know NO one who has had this before that we can get info/insight/etc from, much less anyone as a KID/TEEN. Would love so info if anyone has any... thanks!

My 14 year old grandson has been diagnosed with Hodgkins about 2 weeks ago. He started chemo yesterday with an all day treatment.Shorter treatment today and tomorrow. It has been very hard for all of us. My grandson seems scared and doesn't say much.He's starting a new highschool but has not been yet and will get a home tutor. He has stage 2B.He is going to a cancer center for treatment.

Hi,

I've heard of a few stories of teenagers with Hodgkin's. Here is a story of success on caring bridge that may help encourage you and your son.

http://www.caringbridge.org/visit/jaredweissman

First, understand that Hodgkins Lymphoma is one of the most treatable and curable cancers. Second, trust me when I say that within two months you will know more than you ever thought possible about pediatric Hodgkins Lymphoma. My son was diagnosed in June at the age of 16 with HL Stage IVB. Since starting chemo he has gained weight and he is feeling better than he had been prior to diagnosis. His PET and CT Scans showed marked improvement after just two cycles and we are hoping that the bone marrow biopsy performed today will now show cancer free marrow. The staging process and the prognosis in pediatrics is not quite the same as it is with adult cancer staging. I would recommend speaking with your oncologist about the availability of clinical trials. Don't be afraid and think that the trials are used as a last resort. Most pediatric cancers are treated in trials as they offer improvements to the current standards. HL is highly treatable and researchers are now working on how to effectively treat the disease while reducing the side effects of treatment. Curesearch.org can provide information on trials for HL. If you have any questions that you need answered from someone who is just a few months ahead of you, please feel free to ask.

My thoughts and prayers are with you.

Another Mother

So good 2 hear your son is doing well! My son has stage 4a HL and has been given a great prognosis. He was diagnosed on 10-8-10 at age 18. He’s due for his 6th abvd treatment tomorrow(if his counts r up 2 par). His dr. thankfully did explain how treatable pediatric HL is & i’m grateful to find another Mom who is dealing with the same thing. Vicki

roypamt and others - As some of you know from my previous posts I am a 30 year survivor of stage 3 Hodgkins. Took chemo and radiation, finished it in spring 1981 and have been in perfect health ever since. Regained all my strength and energy and have lived a normal, active life.
I was 25 when I was diagnosed so my perspective comes from adulthood, but I can tell you that this disease is very treatable. It is a bit challenging at times, but you need to stay positive and determined.
Just thought you might like to hear from someone who has been there, and that was 30 years ago, treatments are even better today. Ya'll hang in there, this stuff can be beat and I am proof.

Doug

HI,

Somewhat late in the converstation but my daughter 10yrs old just finished her 3 cycles of chemo for HL stage1 type A
she did well and the prognosis is 95.5% cure rate...but that still does not help make me feel any better! We had great docs and nurses helping and I was able to stay home with her most of the time. She is a real trooper to have to go thru all of this and she is very wise to the fact that it is a life long battle!

Mom

Hi all,

I'm new to this group. I was dx with Hodgkin's IIIB (mets to spleen)at age 15. I am now 48. Had high dose mantle radiation, relapsed less then a year later at 16. Had MOPP chemo (they only use that for salvage now). Went 20 years and relapsed again. Had ABVD age 35. 7 years past and relapsed. Rituxan at age 42. It's now been 6 years. The moral of the story is that, while not curable, Hodgkin's is manageable.

When they say 'cure', they mean 5 years survival. I was given a 50/50 chance for survival back then. The treatments were stronger and I have many residual health problems. However, since I have been living with it and researching Hodgkin's and cancer in general for 30 years, I have come to realize a few things. It is important to ask many questions. What kind of Hodgkin's do I have? There are many kinds. Mine was B cell prominent this last time. B cells are large and grow slowly. My doc told me that chemo has not worked for me because it works on small, fast growing cells. So with the chemo, there were cells left behind, lurking, growing slowly until another tumor showed up. Rituxan targets these slow growing cells. ABVD is the chemo of choice for Hodgkin's, but that doesn't make it the right choice for all Hodgkin's. Many people relapse in their lives and cells have a memory for chemo, so if chemo is again used later in life, it is even harder on the body. If I had it to do over again, I would never have done the radiation, as that causes the most detrimental long term side effects.
I also wouldn't have done the ABVD, as it nearly killed me and didn't cure me.

There are tests they can do in petri dishes to test the chemo on the tumor cells to see if it will even work. Just, please, mom's & dad's, ask questions until you know every inch of your child's disease. It could mean the difference between a cookie cutter treatment and the one that's right for them. They are the ones who will pay the price as adults for what treatment they have now as kids. I'm of the mindset that less is more and modern medicine can't do it alone.

Since Hodgkin's is a lymph node cancer, its is extremely important to eat clean healthy food, eliminate toxins as much as possible, such as household cleaners, toxic shampoos, soaps, etc. dryer sheets or anything with fragrance and chemicals. Also, exercise that drains the lymph glands, such as hula hooping & trampoline.

I wish health and happiness for all of you.

sorry to hear about the diagnosis but one big thing to no is the secret to sucess is food and drink i found this as i was diagnosed with stage 2 when i was 13 i always started my day with breakfast and a big glass of fresh fruit juice and yes it is important to eat good food but if he wants it let him eat it and because i did that which is wot my oncologist said to do and the big thing u think of with chemo is being sick well if u eat u dont end up like that i was sick twice in 6 months and that was when id not eaten

if u want any advice please ask im now at 14 years remission but it looks like it has come back but if i can help please ask and must say the teenage cancer care trust is a great support for u have a look they helped me good luck

My daugher just finished her last chemo treatment on 1/25 and looks like all her tests are good. She has to go back once a month and will have to be on ABX for 6months and no port out for 6 months...she also just caught a cold and I called and with no fever oncology thought to give her bendadryl and make sure no fever! YIKES....need bubble to keep her in

Hello all...I think I am at the start of a road that appears to be well travelled by lots of people. My 17yr old daughter was diagnosed with Hodgkins Lymphoma yesterday and we await to see her consultant on Monday. She had a lump in her neck for several months but it was barely visible and she made no mention of it. When she did she was swiftly referred and a biopsy was performed that didnt come back as anything abnormal. Nevertheless the decision was made to have the node removed and we were given the bad news. She appears symptom free other than general tiredness which we had always attributed to her being a teenager !
I understand that the stage etc will now have to be assessed before treatment commences. The very word chemotherapy fills me with dread as I lost my mother to ovarian cancer earlier this year and saw the affects of chemo on her.
Any advice would be welcomed

Roypamt,

I'm sorry to hear about your son. He is clearly not alone in being a teen sufferer of HL. I was much older, so don't have that perspective.

It sounds like it will be chemotherapy for him, possibly with radiation later. The chemo is no fun, but it is nothing like as harsh as some of the treatments for cancer. It involves a cocktail of drugs by drip once every 2 weeks. Side effects vary from person to person, but take heart. This is a curable cancer, and is one of the best understood of them all. Your son's chances of a full recovery are excellent, and his doctors will do anything they can to mitigate the side effects.