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Newly Diagnosed with Hodgkin's...

janet52
Posts: 1
Joined: Mar 2004

My 30 yr old daughter is new for hodgkins. We are still in the staging process and would like to know what to expect. How long does it take for the chemo to make her sick? How long before she loses her hair? If she does. She is afraid but being brave, I am doing anything i can to help her. Any suggestions would be helpful.We are traveling to Roswell Cancer Institute in Bfflo, 2 hours away. Grateful to hear from anyone on what to expect.

kavnan
Posts: 12
Joined: Jan 2004

My son was diagnosed with HD in October 2002. He just completed his one year testing since finishing chemo and all is wonderful. Hearing you or your child has cancer is a very freightening thing. I remember well those days. The doctor told us in this day and age with all modern medication for nausea that no one should get sick enough to throw up. My son had some nausea but never threw up. He began to lose his hair after the first round of treatment, but never lost it all completely. He would feel punk the first couple days after each treatment. As the treatments continued, he was more and more tired. He never stopped his acitivities and never stopped going to college. He would have good days and bad days. Some days he didn't think about his illness at all and then other days he would be down (as with any illness).
HD is the MOST curable cancer. Tell your daughter to have faith in that... It is true! It is hard for me to believe that a year has passed since my son completed chemo. He feels and looks wonderful. His hair began to grow back almost immediately after treatment (darker and curly). As one mom to another I know what you must be feeling as well. I'm hear to talk if you want. You can e-mail me at kavahome@cox.net if you like. No one knows what it is like to watch your child go through something like this than another mother who watched her child. My prayers are with you and your daughter.

stepet
Posts: 69
Joined: Dec 2003

I was 36 when I was diagnosed with hodgkins in December of 2002. I was at the early stage of 1a and did not even need to do any chemo. So she may luck out and not need any at all. Keep your hopes up! Everyone reacts to treatment differently and your daughter may have mild side effects, but it is good to know all the possibilities. Good Luck and God Bless

Crys
Posts: 2
Joined: Mar 2004

I know it's scary. My granddaughter, age 14, was diagnosed in January 2004. She started chemo in Feb. Her hair began to fall out about two weeks later. Best thing is to get a short haircut early on. She had long hair and it was more difficult, emotionally and harder to clean up. She loked cute with short hair--for the few days she had it. There is a website called Hip-hats.com where we got a great human hair ponylette that goes under her ballcap. Nobody can tell it's not hers. My granddaughter has all her chemo outpatient. They give her a sedative and nausea medicine and start chemo. She comes home in the evening and goes back for 3 days every 3 weeks. She maybe throws up once a day, but Zofran for nausea helps a lot. She has a week or two each month that she eats most anything she wants. Here's a tip--have your daughter chew strong bubble gum during the bad tasting chemo. It really helps block the taste and smell. I wish you and your daughter all the best. Hodgkin's is one of the most curable cancers and though chemo and radiation are hard, you can pick up your life and go on in probably six months or so. God bless.

bc99
Posts: 15
Joined: Mar 2004

My mom was diagnosed with Stage IV about a year ago and she finished chemo at the end of November and is in her third month of remission. Her hair started to fall out about a week after her first treatment and it all fell out pretty quickly - within a few days. It did start to grow back before she was finished with chemo. She was treated with ABVD and she never once threw up or felt really sick, but after the 6th treatment fatigue began to set in and her energy level didn't improve until she was finished with chemo. The day immediately after chemo was typically her best day and then fatigue would set in about 3 days after each treatment. Everyone reacts differently to chemo so what happens to one person might not necessarily happen to another. Just being there for your daughter is probably the best thing you can do for her right now. My mom also really benefitted from attending a support group at the hospital and there are on-line groups that you can join if travelling distance is a factor. I know you and your daughter are going through a really scary time right now but try to remember through all of this that Hodgkin's is curable - the survival rate is REALLY high and regardless of the stage that your daughter is in, the odds her her beating this are in her favor. My prayers are with you both!

81193
Posts: 11
Joined: Mar 2004

janet,This April will be my 10th year in remission.I was diagnosed in 1993 at the age of 24.I was stage 2B.My hair began falling out after my 2nd treatment.I took six months of chemo and 17 radiation treatments.One thing I would ask you doctor about would be a Port-A-Cath for treatment.It is a port that goes under the skin and will make your daughter's treatment alot less painful.Please tell her to keep strong and keep the faith and that God will watch out for her.She and your family are in my prayers!Take Care.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

It's really difficult to know what to expect. Even if I told you, it isn't "real" until you go through it yourselves. This will be a trying 10 months or so. But like the others have said so well already...expect your daughter to live an long, healthy life when those 10 months are through. As far as the hair goes. I know people who have lost it right away, and people who didn't lose it at all but it got thinned out. My doc told me that 14 days after my first treatment of ABVD, the "A" would make my hair fall out. 14 days later I still had my hair. In fact I had about a month of "BHD"s (Bonus Hair Days) I called them. Good luck to you both.

Ronnie10
Posts: 20
Joined: Jan 2004

Hi Janet. I am 21 yrs. old and have Stage 2B Hodgkin's. I have had 11 treatments of ABVD..I have 1 more to go. I also will be getting radiation afterwards. First thing to know...my cancer is already gone. I just need radiation to make sure it will never come back. It is VERY curable. Please keep that in mind, because when it gets hard, that is what she needs to focus on. The drugs will cause hair loss. Tell her to cut her hair real short. I did. It is less messy when it falls out. My hair did not all fall out at once. It gradually fell out over a month or so. I was able to wear it short for a while in the beginning which I did not expect. My hair never completely fell out. It is just very, very thin. And now, after 11 treatments..it is starting to grow back. I remember my first few treatments, I was tired and weak...but did not throw up at all. I didn't throw up until abgout my 8th treatment. And even then, they give you so much medicine to help prevent it, that she will never get sick that much. NOTHING was ever as bad as I imagined in the beginning. NOTHING...the image was so much worse in my head than what happened. I still go to work and school. Her schedule will revolve around her "good" week. I get my chemo on Tuesday...usually from Tuesday to Friday I need to take it easy and REST. Then she can pretty much go back to a normal schedule until the next treatment. Tell her to make the best out of when she feels well. Go out with friends, exercise, take a nice walk...do whatever. It makes the sick times not seem so overwhelming in your life. She is going to be fine. Please let us know what stage she is in and how she is doing. If you have any questions please e-mail..I'd love to help!

Take care,
Veronica

AuthorUnknown
Posts: 1564
Joined: May 2006

My daughter was diagnosed with stage 2 hodgkins -bulky - disease last September at Strong Memorial. They gave us the option of "standard" treatment or the "protocol". Standard was 4 courses (4days) of chemo then unknown weeks of radiation. With protocol, it brought her chances of radiation down to 50% percent. For that reason alone-we went with protocol. She lost all her hair-except for her eyebrows- about 3 weeks after starting chemo. She had cut it short before treatment started, and then when it started to fall out at a furious rate, she asked us to shave it-that was better than having hair on her pillow and all her clothes all the time. Most likely your daughter will be given the option of port a cath (medi port) or broviac catheter for chemo. With a mediport, it sits under the surface of the skin and you do get stuck with a needle there each time it is used. With a broviac, it is an iv tubing hanging out of your chest, but you don't need to get stuck with any needles for it's use-that's what we went with. Best of luck for you and your daughter. We ended up with 4 courses of chemo oct 1st to just before christmas and then 14 days of radiation. She has post treatment scans next week. A positive attitude on her part made ALL the difference.

revlis64
Posts: 1
Joined: Mar 2004

Dear Janet52... I am so sorry to read about your child, i believe that's gotta be worse than going thru it yourself...I was diagnosed with hodgkins stage 2B exactly 3 months after my brother had finished his last chemo treatment (he was stage IIIB...My poor mom 2 years and 2 kids with Hodgkins, plus she is the widow of a non-survivor of hodgkins (Don't freak..he passed in 1969 when treatments weren't like they are today!) Well speaking for both my brother and myself we are survivors and surviving well (it's been 4 years for me and 5 for him...I had 6 months of treatment and he had 8..Neither of us lost all our hair, but it did thin ALOT... I was given a drug called allpuranol (sp) which kept me from getting mouth sores, my brother was not given the drug and he suffered..I was given Neupogen, he wasn't and we both stayed on our schedule treatment...We both went thru the bone marrow test (ouch!)... we both were put on the anti-anxiety drug Xanax and that helped a great deal with sleeping, neither of us ever got sick, but tired.. We both were gifted with beautiful daughters of our own after trearments with no ill effects and mine came 9 months after my last chemo treatment (i half expected some green glow coming from her) ..The hardest part is giving up total control (by that i mean that this disease comes and takes hold of your life) but truly it's only for a sec of your lifetime...It's a scary time, but thru all of this you and your daughter will pull thru because hodgkins doesn't win WE do...take care and God Bless!! If you or your daughter want to email me feel free.. revlis64@aol.com....I'd like to know your daughters progress...

Dave95
Posts: 2
Joined: Mar 2004

I was also diagnosed with Hodgkins when I was 30. I am now 39 and an 8 year survivor. I'm not sure how far your daughter has gone thus far in staging (did she have a laparotomy or the famous "toe test" lymph node scan). I personally opted out of the laparotomy and the toe test and was willing to be staged high to avoid any delays in my treatment. My oncologist agreed based on my physical condition at the time. I was mis-diagnosed at first and was six months into the symptoms by the time I was properly diagnosed with Hodgkins. As I can remember, the lymph scan and laparotomy are, or at least in 1996, were standard staging processes. Although my Hodgkins was confined to my neck lymph nodes, I was staged high and underwent chemo for 6 months. At the time, radiation treatment might have been an option if the laparotomy would have proven no spread. I opted for the chemo. My feeling was that if chemo was the standard treatment for a advanced Hodgkins, then it should cover a lower stage Hodgkins. My oncologist agreed. I did very well on the ABVD chemo regimen. I'll be honest, it does make you sick but it is very bearable. I lost some hair, but not much. I was generally nauseated for the week following my treatment then had a good week before my next treatment. This went on for six months. The ABVD is very tolerable. Especially for people in their younger years in decent health. I was 30 like your daughter so affirm her that she will be OK. It's not fun but she can make it through. I can also tell you that my very noticable tumors decreased by half in size the very night of my first treatment. Hodgkins is extremely curable. That must provide comfort to your daughter as well. Having my wife with me during treatments also helped tremendously. I would recommend that your daughter have a stroing shoulder to help her through it and also to try to maintain a positive attitude. I was also very afraid in the beginning. It's normal. But I soon developed a reputation at the chemo center for being quite upbeat. Attitude goes a long way to beating the disease and the affects of treatment. Bottom line, some fatigue and nausea are to be expected. I also saw my fingernails change in shape/color, so if that happens, don't be alarmed. Low blood counts can happen too some times. I did fairly well with that. I also recommend that your daughter avoid anyone that has a cold or is sick while she is on treatment. One final comment; ABVD will not cause sterility. My wife and I had our first child 2 years after my treatments ended. I don't know if that's a question for your daughter but it was very reassuring for me at the time. I wish you, your daughter and your family the best. Stay strong and all will be fine.

Heatherjb
Posts: 27
Joined: Feb 2004

I was diagnosed at 29 with stage 2A Hodgkins and finished ABVD chemo 18 months ago. I did get very sick from the chemo, which the doctor said was unusual. I tried 18 different drugs to help with the nausea and vomiting and nothing worked. The doctor finally put me on an anti psychotic drug that made me sleep through the days following chemo. I do not tell you this to scare you or your daughter, but when I was having chemo, I thought I was the only one that got sick. I had heard from so many people that you don't get sick and that the doctors can control it. And since everyone reacts differently, it is important to know that you are not alone. I was still able to work full time during treatments. I would have chemo on Friday and sleep all weekend and be back to work on Tuesday. Since I only had chemo every other week, I would just get to feeling normal again before I had to go back in.
I had long hair and my doctor told me to cut it short before I started treatment. I did and then kept almost all of it until 2 days after my 8th (and final) treatment. Then it all fell out in the shower. I let my brother shave what little bit I had left and wore a wig for 4 months. Because of mantle field radiation, I didn't have hair on the lower section of my head for quite a while. Since my hair has come back in, I have been told by many people that I look better in short hair. Who knew that it would take cancer to make this discovery (my hair is much shorter than I would have ever worn it). I have decided to keep it short and it is really fun and easy.
I have been cancer free for 18 months now. I cannot believe how fast the time has passed. It is so true what they say about having a positive attitude. You have to be able to laugh about cancer. I make cancer jokes all the time and my family doesn't think they are funny, but many people who have had cancer do. I have learned so much from my experience and would not trade a single day. It is very important to let your daughter know that she is not alone. God bless both of you on this journey that you are taking.

whizzar47
Posts: 1
Joined: Oct 2002

Hi, I was 40 years old when I was diagnosed with Hodgkin's. I had radiation for about 3 months and they felt it was enough. But 2 years later it returned and I had 10 months of chemo. I started to lose my hair after the 2nd treatment. My husband couldn't stand watching it fall out. He shaved my head while my children took pictures. It made it easier for everyone. I never wore wigs so I had several different hats. Take everyday one at a time. I know it will seem like a long time but it's only a short time in her long life.
I'm now 49 years old and plan to live much longer. I will say a prayer for your daughter and you tonight.

Franquix's picture
Franquix
Posts: 3
Joined: May 2004

Janet: I'm just a couple of weeks in remission after 6 months of chemo with ABVD. I found there are drugs these days for almost every side effect from nausea to depression...it's just a matter of keeping the doctors informed about what's going on. My hair got a bit thin but didn't fall out completely. The most helpful things for me going through cancer were an attentive oncologist and a loving, supportive family.

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