recurrence, how probable, Hodgkins, lymphoma

amy Lynn · New User Joined: 30 Aug 2006 Posts: 2

Hi everyone.

I was wondering if anyone has hodgkins lymphoma or knows of someone that had it. Did it come back after being cured. I just got some scary news that if mine were to come back I may not even be able to be treated or it would be worse than the first time. Please note that it is hodgkins, NOT NON-hodgkins.

Any advice would be welcomed and appreciated. I am 35 and was diagnosed on my 34th birthday. I am free now, but for how long? Thanks. God bless everyone on this website.

Amy

Life_101 · Regular Joined: 22 Apr 2006 Posts: 20 Location: N.E. Ohio

Hi Amy,
I read your post and am wondering who would tell you something like that. Don't know what type or stage of your Hodgkins but if you do relapse there are more treatments available. For one thing your relative young age and gender are in your favor.

I also had Hodgkins and am currently in remisson. Relaspe is never far from my thoughts but I don't dwell on it and you shouldn't either. You can't live your life that way. Don't you have follow-up checks with your doc? Voice your concerns with him/her next visit. Wishing you the best.

SHANELLE85 · Regular Joined: 06 Jun 2006 Posts: 31

Hi Amy,
In NOV 05 i was diagnosed with hodgkins lymphoma at the age of 20 and now that im in remission its such a great feeling but at the same time there is always a doubt in the back of my mind saying "what about if i comes back.. what will happen 2 me" and quite frankly i think these thoughts r normal but u shouldnt let it run ur life 2 the point where its all u seem 2 think about!
i have been in remission 4 about 5 months and im getting very nervous about my next check up.. but who could blame me... or anyone else in this situation, after all we're only human.
It goes without saying that any type of cancer a person may have had or have has a risk of the cancer reoccuring.. obviously some cancers worse than others, but all i know is that hodgkins lymphoma has a very good cure rate about 97% (obviously when u catch it early and depends on ur age) but u r pretty young, but even when u get it at a late stage it can still be treated its just harder... my oncologist said if its going 2 come back it will most likely b in the 1st 2 years of being cured.
but like i said dont let this insecurity run ur life and worry and stress u out coz thats the last thing ur body needs.. just live everyday as it comes and im thinking mayb u have 2 much time 2 think about this matter.. mayb u should get involved in an activity.. like 4 instance i joined a gym.
i hope i have helped u in some way... good luck!
P-S.. Plz write if u have any questions u would like 2 ask. Wink

Hughty · New User Joined: 31 Oct 2006 Posts: 7

Hi Amy,
I am a surviviorof Hodgkin's 3C. They had to remove my spleen, a third of the liver and many ymph nodes. I went throught Chemo in 1972 to 1976. I have had no recurence since. The cure rate is very high now. I was in on the guinea pig stage. I had MOPP plus Bleo. They can go back over and over if they have to. But nowdays it is not very often that they have to. The Chemo is actually easier on you a few years later in the fact you know it works. Sometimes it may take a few trys before they get it all. Don't worry. I have got to meet my grandkids, and am looking forward to a loooong full life. It has been over 30 years. I prefer the word cured to remission. Just enjoy life and don't worry! Very Happy

Rlene · Regular Joined: 30 Oct 2006 Posts: 24

Hi Amy , I just had my 6 month checkup after undergoing 6 months of chemo and was told that my hodgkins may have returned. I was so upset and still am, I mean it has only been 6 months, I was not expecting it at all. I am currently waiting to hear form the doctors as they are sending all my previous cts and PEt scans to a radiologist. I was told there was a small chance nothin has returned. So depending on how fast it is progressing, is when I will be in the hospital to undergo a Bone Marrow Treatment. If I did chemo again and it didnt work the first time it probably wouldnt work a second time, if I chose radiation and it didnt work , then it slims the chances of doing the BMT. I am 26 years and its been a pretty stressful year. I will hope for the small chance the cancer hasnt returned for now. So to answer your question on if it may return I am sorry but yes. The first time of doing chemo is an 80% chance that it will be cured. I really thought that 80% was a good chance. Just try to stay positive and thats about all u can do. Best of luck to u

henius · New User Joined: 05 Nov 2006 Posts: 7

HI everyone .

I just get result from my doctor , say that i have hodgkin's disease .im wondering if some one know about that cancer , if its easy to diagnosis with chemo . and how that work , im just 22 old , zorry too muchj about that , my famelly history are clear , none have cancer befor .

here the result of my doctore :
The tissues show fibrosis and xanthogranulomatous inflammation . there is intact bronchial epithelium which is undermined by dense lymphohistiocytic inflammatory cell infiltrate . within these areas are a mixture of plasma cells and occasional large multinucleates pleomorphic cells. there is nuclear lobation and mummified cells which suggests hodgkin's disease . while an unasual location, the background milieu would be most compatible with this. A viral etiology is also possible, with no mediastinal involvement germ cell tumor is unlikely.The case will be forwarded t hematopathology .

just wanna feel OK about that , we have just one life , , and we will die just one time , so plzz let me know how that will be diagnosis , if with chemo , or with surgery , thanks for helping me

henius · New User Joined: 05 Nov 2006 Posts: 7

just wanna say some thing else , and that make me dont understand nothing.
i dont sweet at night , i dont have fever , i didnt lose wieght , i geint wiegh . thats make the thing going crasy , nothing of the Signs and symptoms meman that i have cancer :S
thanks for the help

Rlene · Regular Joined: 30 Oct 2006 Posts: 24

I was a bit confused with your email, but if u do have hodgkins and not non hodgkins the cure rate is really good. I am 26 and I had hodgkins myself and I had a huge mass from the bottom of my neck to the end of my ribs , right across my chest. I had 6 months of chemotherapy and the disease was gone. Chemotherapy will make you sick, but you have to try not to let it get the best of you and the 6 months went by faster than I thought it would. I was told by 2 specialists the chemo treatments had a 80% cure rate. Your cancer specialist will do what is best in treating your disease. They may want to do a different method of treatment.Dont start thinking about death, things will be ok. I know from experience that getting all worrried and stressed out will make things worse . Try to stay positive, easier said than done but u can do it.

henius · New User Joined: 05 Nov 2006 Posts: 7

thanks Rlene .

can u tell me witch kind of sikness the chemo will make u , because i hear that the chemo , will not let u walk , i mean make ur legs big and ur hand big , u cant walk , one more quetion , if i will do the chemo , do i have to stay in the hospital untill everything will be fine or i have to just come sometime to the hospital for the chemo ad go back again to my house , thanks for answering my quetion. God bless all people .

Rlene · Regular Joined: 30 Oct 2006 Posts: 24

I dunno where the heck u are getting your information from. Chemo can make your finger tips numb, your legs ache, loss of appetite, your mouth sore and can make u throw up. The side effects differ for all people.I was just sick throwing up the day I recieved treatment and sometimes the day after. I went to the hospital every 2 weeks for a treatment. The treatment lasted about 3 hours and then I went home. Where are u from? I guess depending on that things may be different.

henius · New User Joined: 05 Nov 2006 Posts: 7

Ohh i see , thanks for the information , i live now in CA , i just come from my country , i was livin in europe , i do the same biopsy in europe , they didnt find nothing , i mean they saw something on me but they say is not cancer , so when i come to the USA , i do it again to know what is that in my chaste , and the result was like i say , the doctore suggests i have hodgkin's disease , normaly everyone i know he have cancer , he have some symptom like swet at night , fever , lose wieght ... , but me i dont have those things on my body ?
so from ur experiance , did u was have a sweting night , fever and lose wieght or no?

Thanks for ur time , God bless everyone and bless america

Rlene · Regular Joined: 30 Oct 2006 Posts: 24

Ya I had a few symptoms, but I thought they were nothin. Mine were after being in the sun I experienced really itchy skin, apparently itchy skin is a symptom. I didnt lose weight at all, but I was very sleepy alot, falling asleep very very early at night. I would sometimes feel dizzy, my hair was falling out more than the normal amount in a day. Like I could run my hands through it and sometimes get like a clump. I just thought it was cause I colored it alot. I also didnt really sweat at night. I really thought nothin was wrong with me until I was at work and noticed my neck had swelled up. So my boss took me to the hospital and things happened from there. I thought I was having an allergic reaction to some food. Well I hope the doctors get u all figured out soon.

henius · New User Joined: 05 Nov 2006 Posts: 7

Thank you so much Rlene for ur time , u really help me a lot, u answer for lot of quetion , i was looking for answer long time ago .
i wish for u the best , and great life , cus u already know how people can feel when they know that they have a cancer , it can drive u crasy , but i take it easy , i really some time feel scared , but not about my self , i scare about my famelly when they will know that , no one know now at all , just me and my wife , i will keep that as secret , untill i see the result with the chemo .
as u see in the past of my emails , my doctor still suggest that i have hodgkins cancer , , and the last time i talk to him he told me that he will send my case to a profesionnel cancer to get the last result , im confused .
well i wish everything will be ok , it was very nice to talk to u , i will post anything new happend to me , and if u have any time plzz try to help , and god will help you .
i have to do a CT scan from my chest untill my stomack to see if the hodgkins only on my chest or if he is in other place , i wish only on my chest . thanks again for the help mate . God bless you , and bless everyone

Hughty · New User Joined: 31 Oct 2006 Posts: 7

Hi,
The sysmptoms of Hodgkins can vary as to how many are there. All of them don't have to be there. The only conclusive evidence is a biopsy of tissue. I had Hodgkins from my head to my toes, and in the spleen and liver, in 1972 and then it took about 6 months to diagnose, because of the tests available at the time. The reactions of the Chemo depends on the individual. I had extreme Nausea, hair lss and some edema. All things considered, I would do it again. The side effects pass, and the hair grows back. Early diagnosis, improves the chance of success, which very high in Hodgkins today. Don't let people scare you. The chemo is as rough s your mind makes it. It is worse thinking about it sometimes, than the treatment. You will worry about the recurrence, but if all you do is worry you don't have much of a life. Thanks to a group of good friends, I was too busy to worry very much. I had a total of about 5 years of chemo, but they got it CURED. The key is wanting to survive, and not accepting that you will die. Go on with life, and enjoy every second.. Hodgkins is curable. I am now 57 and am doing fine. I considered my self cured, not in remission. The power of the mind is Awsome. Good luck and just enjoy life. Wink

Hugh
Email me if you need a friend to talk to. I will be glad to help if I can.

Rlene · Regular Joined: 30 Oct 2006 Posts: 24

Ya I agree that things are scarey thinkin bout how your family will react. I found that it was harder for my sisters and my mom and everyone around me because they felt useless and wished there was more they could do for me. I currently had my 6 month checkup and the doctors think the cancer may have returned, so I am also waiting to hear from doctors, sometimes its hard waiting and other times I dont wanna ever get the phone call. But I know if it has returned I am prepared for whatever the doctors have in store. If a person is to get cancer the best and easiest one to cure is Hodgkins. I just think of how lucky I am to not have some other fatal type of cancer. I am young and u are only 22 , we can fight it. If the time comes where u do have to tell your family tell them no cancer is nice to get , but if u had to have cancer hodgkins is ok and very cureable ,u are strong, u are not gonna die and things will be just fine. The best thing u can do is stay positive throughout the treatments, sometimes its hard. It makes your family handle things a bit better to.

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