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My son with Hodgkins..

kalalaud
Posts: 14
Joined: May 2012

Does anyone know the regiman regarding ABVD treatments? My son has just gone through 6 mos of treatments and has had a month from that before going into a PT Scan next week Monday... He is saying that he thinks he still has his cancer...he says he thinks he still feels it in his back. The doctor is saying that he won't have radiation, so I don't know anything about what happens now. I've tried calling the doctor, but I keep missing her call back. Can someone tell me anything about this treatment?

kalalaud
Posts: 14
Joined: May 2012

i was hoping to get some answers at this website... apparently i can't...

kalalaud
Posts: 14
Joined: May 2012

i was hoping to get some answers at this website... apparently i can't...

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hang in there while you await your responses from here and the doctor.
I did have ABVD 18 years ago but it was for recurring Hodgkins Disease. Initially I was treated with mantle radiation. Treatment regimines have changed vastly from 23 years ago. There are new chemos and stem cell transplants as well as radiation to get the patient cured. Hopefully your son is overthinking what he is feeling in anticipation of the PET scan. I wish the best for you all and please let us know how he makes out. Cathy

kalalaud
Posts: 14
Joined: May 2012

Thank you so much for your response! I'm hoping that my son is 'overthinking' it as well..I'm a nervous wreck and don't know what to expect. I'm trying to be positive and I think that signing up for this website might be my saving grace....something to use to get connected with others who have been through this. Thanks again...

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi kalalaud,
I did not have this kind of treatment so I can't help. Up in the right hand corner of this page you can click on Search CSN Content and will see comments from those that have done this treatment. Once you click, just type in ABVD, which will then display the comments. I did CVP-R treatment back in 2010. I didn't want you to think your question was being ignored...the people that have done ABVD may not have seen your question yet. Be sure to run all of your questions by the doctor when you finally connect. I always have a list of questions written down for my doctor. If I don't write thigs down, I forget...remnants of chemo brain, I think. My prayers are with you and your son, and let us know what you find out. Best wishes...Sue
(Follicular NHL-stage3-grade2-typeA-diagnosed in June 2010-status stable-age 61)

kalalaud
Posts: 14
Joined: May 2012

Thank you for getting back to me on this... and thank you for your prayers... I think this website will be good to connect with others to understand what we're going through and what others are going through. I think this is a positive website and can be useful for my son and I. Thanks again for getting back to me. I really appreciate it!

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Kalalaud

I did not have ABVD but wanted to be sure to say welcome to our wonderful and supportive group.

I hope that you will be able to be in contact with the DR shortly. I am sure that after the Petscan you and your son will feel much better. It is always such a stressful time leading up to the scan. I think that most all of us feel the added stress before, and have fear and concern about what will they ( the Docs) find. What ever the results are, we will be here to support you and your son.

Positive thoughts for your son
Lisha

kalalaud
Posts: 14
Joined: May 2012

Hi forme....thanks so much the positive thoughts!!! Monday can't get here soon enough..I don't know if its the anticipation of doing the petscan that is making us worry so much... I'm being as positive as I can..and it is so nice to know that I have this support from all of you... Here, I feel I can vent a little of what we're going through and ask questions. And,in return, have people who truly knows what is going on or knows how we feel. Our family and friends are there for us, but it's hard for them to really understand this. I thank all of them for being there though... but I feel more comfortable to read some of the stories on these blogs...and how people are coping with it all. Thanks again for getting back to me...it truly is appreciated!

Desiree..

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

If he has Hodgkins Lymphoma im here battling at the same time as him . I have had ABVD about 3 years ago but have relapsed. I can offer support or assitance just need to be sure its Hodgkins vs Non-Hodgkins

kalalaud
Posts: 14
Joined: May 2012

He has Hodgkins...So, does Hodgkins relapse easily? What is your regiman now? I've read alot of blogs about Hodgkins relapsing... Is this disease hard to beat? My brother had Non Hodgkins and he has beaten it... Is Hodgkins a harder lymphoma type to get through? I have so many questions and I'm so anxious to get on with my sons PT Scan. Is there any hope for this disease..he's young and has alot more years to live...My heart breaks for him..

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Desiree,

Welcome to this site and please encourage your son to check it out too.
Please know there's hope. Lymphoma in general is very treatable.

Also, take anything you find on the Internet with a grain of salt.
Some things you read can scare you silly - especially out of context
or if it's dated. They are making strides with cancer treatments and
new treatments are always being developed/studied.

Please tell your son he is very welcome here also :).

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

kalalaud
Posts: 14
Joined: May 2012

Thanks so much Jim... I sure need those positive thoughts right now.. I can't sleep... I pray for the best and just truly have to believe he will beat this...

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hodgkins Disease has a high cure rate. You are reading about the many relapses on blogs because the cured patients feel so well and energized and go about living their lives. The cured probably aren't posting on web sites about their positive results. That may be why you are thinking relapse happens often. I think 23 yeas ago the numbers were around a 90% cure rate. I'm thinking that number has crept upward.
I did relapse but they were trying to treat me with what they thought at the time was the least caustic treatment(radiation). I was just married and preserving my fertility was considered. My relapse happened during a pregnancy but it was 5 years later and a new cocktail...ABVD...became available and viola, here I am 18 years past that.
I know the Hodgkins experience was and is much harder for my parents than it was for me. I think it made them feel helpless, so my heart aches for you. I try to remember, all these years, that worrying will not add one day to my life but it will surely rob me of time wasted worrying.
I hope you can ge through this weekend with relative ease. Cathy

kalalaud
Posts: 14
Joined: May 2012

Thank you Cathy... Relapse...it's always on my mind.. my son is only 24. He has whole life ahead of him. We will fight the fight for him. He will get better. I have to believe that. Thank you for making me feel more at ease with this. I can only believe we have hit our bottom and now it's time to rise to the top. : )

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

As several of the others have commented, HL is usually very treatable, and has one of the highest permanent remission rates of any cancer. Stats can vary a little with the strain of the cancer(there are 5 common types of HL, and about 25 types of NHL). Your son is also young, which statistically improves survivability significantly. ABVD is the most common first-line treatment for HL, and if the patient is Stage 3 or 4, radiation is usually avoided. Bless him and you both. Please share the PET results, if you are so inclined. I suspect that he is in total remission. As time goes on, the worry and fear dramatically fade from the mind. Max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

I also did 6 months of ABVD-r. It is common to "feel" that you are still diseased, but lymph nodes are not normally "feelable" internally. I was stage 3 with massive nodes all over the chest area, and never "felt" anything anywhere. I have been "clean" for about three years, but have "odd" feelings all the time, especially around incisions and areas that were cut. With late-stage HL, radiation is usually not given. Worry is just part of life after treatment. I pray all is in remission, and that his mind can find some peace. Max.

kalalaud
Posts: 14
Joined: May 2012

Thank you so much for being positive... we really need it right now.. but, the sad thing is, we just found out... he has to do more treatments...after he finished his abvd, their was a month between his last day and his pt scan on monday...they see the tumor growing back. so now it looks like he'll do a couple of rounds of chemo in the hospital and then he'll do 2 to 3 mos of stem cell transplant... i don't know the words for all of the treatments because it all went over my head when i heard "his tumor is growing back". i couldn't absorb anything after that. i just know that he's in for a fight for the next 5 months or so... please keep sending your prayers our way.. lani will need all he can get..he's so disappointed and depressed. i need to stay positive to get him through this... so all prayers are greatly appreciated! we're going to beat this - there is no doubt about that!!! i will fight the fight with my son... whatever it takes, one day at a time!!! god bless to you all... thanks for sharing your knowledge and prayers with me...

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Would he like to call me or email me? I cn talk him on th mindset

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Really sorry Kalalaud that your son is going through this and on top of that, that the tumor is growing again. I will be praying for your son and for you! Please don't lose the faith that your son will beat this and that he will get better! Positive thoughts your way...
(((Hugs)))

Sincerely,
Liz

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

kalalaud,

I'm very saddened that your son needs further treatment. The stem cell process is a second line, or "salvage" therapy. Since nearly all of it will be administered as an inpatient, you will at least have nurses and staff to discuss things with directly. And you always have us here at the discussion. If they have not already, the doctors will be testing to see if his own stems can be used, or a relative may need to donate, but usually the patient's own cells are sufficient. I will pray for him daily. Max

kalalaud
Posts: 14
Joined: May 2012

thank you max.... i believe they will be using his own stem cell. the stem cells are harvested, frozen stored until he's done with his chemo... then given back to him... i believe that's what he's gonna get. the doctor said it will be intensive, but i have to believe this will work for him...he is going to get through this... thanks so much for keeping him in your prayers.... desiree..

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I'm saddened to read of your sons results. Your post sounds positive and hopeful, I hope you can continue to carry those traits throughout your journey. Praying for strength for you and a cure for your son.
Cathy
HD 1989
HD 1994
IDC 2007

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi,
I'm so sorry the scan results showed tumor growth. The next few months are going to be difficult with chemo and stem cell transplant, but hopefully by fall he will be on the road to a full recovery. Keep the faith and I will most definetely keep you both in my prayers. Best wishes...Sue (FNHL-2-3a-6/10)

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Big hugs, Desiree.

Sorry you guys are experiencing this. Sometimes the war
isn't won in the first battle but it can still be won so please
take heart that there's still plenty of hope.

We're all on your side and here for you guys. You're in our thoughts
and prayers.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

kalalaud
Posts: 14
Joined: May 2012

thank you everyone for showing so much compassion and all of your support and prayers...i truly believe that this round of treatments will help my son to get onto the road to recovery... what a wonderful site this is to have so many new friends that truly understands what we are going through! thank you all again! hugs to you all!!!

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Kaluud let me know if u want me to talk to your son

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