CancerCompass message board discussion started by Mimisue on 2/16/2005 http://www.cancercompass.com/message-board/message/all,1575,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My daughter is 24 years old and was diagnosed with hodgkins when she was six months pregnant with her third child. The baby was delivered two weeks ago and is doing fine but my daughter is an emotional wreck. She is in a deep depression. She is having a pet scan and porta-cath today. I am looking for any material that I can send to her or a support person in her area(Boone,N.C.) to help her. Any suggestions will be greatly appreciated. Susan Mimisue Wed, 16 Feb 2005 00:00:00 GMT Susan, Congratulations on your new grandchild! Please Tell your daughter to try and not worry. Hodgkins is a very slow growing cancer and its is easy to CURE! There is a 90% chance of her being totally cured and will never have to deal with it again. I was diagnosed in 2002 with stage 2B. I found the lump in my neck. I also had a port put in my left arm to save my veins. I went through 8 treatments of chemo and 6 weeks of radiation.(M-F only)The chemo doesn't really bother you at first. You just feel nauseous a lot but I never threw up. Be sure and go to a hospital that uses state of the art drugs to counteract all the side effects. I ate like crazy, so bring her all her favorite foods. The steroid they give you make you very hungry. I could even eat while I was getting chemo. My appointment was always around lunch time and it takes 2 hours to recieve all the bags of medicine. I live in NH. I can at least answer her questions and tell her from experience that she is going to be fine! Carolmarie Sat, 26 Feb 2005 00:00:00 GMT My mom recently posted a message about me. I am 24 years old. I was diagnosed with Hodgkin's when I was pregnant with my 3rd child. I thought I had pneumonia because I had chest pain, a dry cough, and shortness of breath. When I had a chest x-ray, they found a tumor the size of a softball in my chest. It is pushing against my left lung and causing fluid around my heart. I had to have a surgical biopsy to get a diagnosis because the needle biopsy didn't produce any results. I was in the hospital for 7 days after that surgery with tubes sticking out of my left side. I had to wait a month after they found the tumor before I had a diagnoses. That was a month of hell for me. I didn't know if I was going to live or die. I was relieved, however, when they told me that it was Hodgkin's and that it was the best cancer I could get. I have already started treatments. I am doing the ABVD chemo treatment every 2 weeks. I had to delay my second treatment for a week because my white blood cell count was too low. They gave me a shot of Neupogen to raise my counts and I have to go back to the doctor in 2 days to have them rechecked. Hopefully all will be well and I can resume my treatments. They really aren't too bad. I was very tired and felt like I had the flu for about 3 days after my treatment. I feel fine now and my appetite is big! I noticed that my cough and shortness of breath have gone since the treatments started, but I itch a lot now. I am not sure if that is because of the Hodgkin's or a side effect of the chemo. I am interested in talking to anyone who has or has had Hodgkin's. It would make me feel better to share my experiences with someone who knows what I am going through. Marcy t. Sat, 05 Mar 2005 00:00:00 GMT Hello Marcy! How are you doing? I thought I posted a message to you earlier...but now I don't see it. lol If you have gotten that one, sorry for another one. I wanted to share my story with you, as I too had Hodgkin's Disease. I am 20, was diagnosed in July of 2003, went through 6 cycles or 12 treatments of ABVD. I was staged 2 and the cancer was in my neck, shoulders and chest. Is it just in your chest area? You are right, if you are to get any cancer at all this is the best one due to the high cure rate. I'm glad to see that you are still have an appetite and are feeling good a few days after treatment. Sometimes the chemo tends to have a build up effect as you continue to have them. For me I just got to a point where I was just tired constantly, fatigue set in. I have been in remission for 9 months, and still am tired. Hopefully with time that will go away. The key thing when facing this is to keep a positive attitude and outlook. This along with your strong will and determination will get you through anything!! Keep your head up Marcy you will get through this! I would love to be able to talk with you and help you as you are going through this. I look forward to hearing from you! Take care and God Bless! :o) -Laura Lulucincygirl Tue, 08 Mar 2005 00:00:00 GMT Hi MarcyT., I am a mother of four...all grown(21,18,15,14)I was diagnosed with Hodgkins in October 2003. My experience was similar to yours. I was experiencing trouble sleeping on my back at night as I felt something heavy in my chest and woke up to my raspy breathing at night. I coughed alot in the mornings. I started having trouble swallowing my food. I was told that I looked too healthy to have anything "bad". Dr. said- Take this asthma medicine and see us in a few months. I insisted on a chest xray. They found a tumor the size of a grape- fruit in my chest. They could not get anything from the needle biopsy as it was too hard. They decided to try and remove the tumor. I had a large incision on my chest, and they discovered the tumor was attached to the pericardium. There was alot of fluid surrounding my heart so they put in a pericardial window. I was in intensive care for three days with "garden hoses" or chest tubes in my chest to drain the fluid. The day that I was going home I recieved my news of stage 2B Hodgkins. I received 12 wks of chemo and 4 weeks or radiation. It went very well, much better than I expected. I never felt sick, just really tired for two days at a time, then pretty good. Luckily my color stayed nice (alot of pretty pink blush). I made some really wonderful friends that had treatment every Tues. morning. We would start out laughing and joking, and then as we sat, we would get sleepy and quiet. As I think back now I am proud of how positive and strong I was! I was told many stories of people who have been in remission for years! And now the treatments are even better, so we are very lucky! My treatments ended April 2004 and so far, all CT scans are fine - just scar tissue.Here's a weird one - I've lost my precious eye lashes four times now since the end of my treatments but they grow back nicer each time! I will not share all of my silly little symptoms from my experience,yet as everyone is different, and your experience may be different, but if you have any questions or concerns, PLEASE ASK! I had a hodgkins survivor to ask, and that was more help than anything! Take Care! Julie. Julier. Sun, 13 Mar 2005 00:00:00 GMT Hey Julie, thanks for the response. I haven't talked to anyone yet who has had such a similiar experince with this. I am glad that you told me your story. I get a little worried at times about the chemo's ability to get rid of this because of the size of it, but it got rid of yours and it sounds like it was the same size as mine. How many treatments did you have to have before they started seeing some shrinkage? They did a chest x-ray of mine before the second treatment. It hadn't shrunk any, not that they could really see, but what they were more concerned with was that it hadn't grown. I think I have to have about 8 cycles of chemo, or 16 treatments, and maybe some radiation afterwards. The doctors said that I too would probably be left with a small mass of scar tissue after it's all said and done. The middle of my tumor is already dead anyway. They said that was from the tumor outgrowing it's blood supply. Did you have itchy skin when you had Hodgkin's? I have. I can't wait for that to go away. Anyway, thanks for responding. It's good to talk to others who know what's this is like. It gives me hope. Marcy T. Marcy t. Fri, 25 Mar 2005 00:00:00 GMT Hi Marcy, I had twelve weeks of Chemo, in which every three treatments I had two days in a row. I had the Stanford V plan. It was a very agressive treatment. I received 20 treatments of radiation following chemo. I completed almost one year ago. My tumor was reduced in size on the first scan, but I had a few treatments by then. I noticed my symptoms had subsided after the first few treatments. I could actually lay on my back without feeling "pressure" on my left lung. I think my scar tissue is still around 8cm?, so my tumor never really shrunk that much. The only thing I know now, is that it is not growing. Itching---I was extremely itchy all over my chest and my lower left leg in the front along my shin bone (strange). I felt I wanted to scratch my skin off of my chest at times!! Well, I just keep telling myself that I'm finished, it's all gone and it's not coming back! Hodgkins always leaves a scar. I have not heard any "sad" stories about Hodgkins patients, even people treated years ago!! So you have to keep that in mind! It is a very treatable disease and treatments keep improving! I had major chest surgery before chemo. I have a scar at least 10 inches long down the front of my chest and three X-shaped scars from the chest tubes. There was alot of fluid that had collected around my heart from the tumor. The doctor put in a pericardial window so that fluid could not collect again. My chest is still sore often. I may go back to the surgeon just to make sure this is normal. But I'm sure it's ok. As a result of my treatments I am in menopause at 42 -- no period now for over a year. Lots of "hot flashes" . My poor body has been through tremendous changes in the past year. I have a cute hair-do now. I never thought I'd like short, wavy hair, but it's so easy!! Look forward to the "new" you, with "new normals"(you will know what I mean after you finish) and a "new outlook" on love and life! I know now what is important and what is not!!! Have a wonderful Easter! Enjoy your children! They grow WAY too fast!!! Please let me know how you are doing! My email is j4cmryan@rcn.com if you'd rather send your message there. Take care, Julie. Julier. Sat, 26 Mar 2005 00:00:00 GMT Hi Marcy. I read your info and wanted to let you know that I too had Hodgkin's Disease. I was at the time a single mother of three and my youngest child had just turned 2. My cancer was in 4 areas above my diaphram. I was labeled with stage IIA Nodular Sclerosing. It took a long time before my diagnosis ever came. I had a bad cold so it seemed at first. And after the the cold and cough and laryngitis went away, bumps appeared. In fact I was sore on my left collar bone and I thought I had somehow broken it because it was so swollen and kinda tender. It was tender because it was Christmas Eve and I was wrapping up the Christmas Presents. I thought I had hurt myself and debated whether or not to go to the ER. I decided to wait and went to see my doctor after the holiday. He took a look at it and told me it wasn't bacterial and to wait two weeks and see what happened. In that time frame another lump developed. He again said to wait and make sure it didn't go away on it's own. It was the size of a golf ball. By the end of the week it was the size of a goose egg he said. He immediately went in and called the surgeon and set up an appointment for me to see him that afternoon. The surgeon set up a biopsy. It came back inconclusive after a month of pathologists looking at it and it being sent off to a specialist. It had characteristics of Hodgkin's they said, but not diagnostic. There were not any REED-STEINBERG cells. I left the office crying and immediately went to the library. THe surgeon wanted to wait another month to biopsy again. He thought it would turn up to me a flesshy tumor or something. When I began to read to about Hodgkins I was very upset. I wanted to know what the liklihood could possibly be that it would look like the cancer and not be it? I called oncologists and was told until I was diagnosed as having it, they couldn't help me. I felt angry and frustrated. I thought my life is on the line, why won't anyone help me save it? I called my doctor and told him what happened. He was very upset and said the chances were slim it wasn't cancer and called the surgeon immediately again. I was scheduled for surgery the next day. When I woke up it was positive for the cancer and then the restof the fun started. I had cat scans, a bone marrow biopsy and a laporotomy. My spleen was removed. All my cancer was in the top part of my body. I underwent 6 weeks of radiation therapy. I had a bad reaction to it. But I made it. A year later I relapse and did Chemo. I was lucky to not ever throw up with the chemo. I did end up losing my hair. I had a portacath inserted because my veins were awful. My counts would go very low and I ended up taking shots to boost back up my white count. It was my choice to either spread out the treatments or take the shots. I wanted to keep aggressive about it. I had ABVD. I did not have another scan until after the chemo was complete. I didn't feel great the first day or two after treatments. But I prevented illness with zofran. I even worked. That scan showed all the cancer to have been gone. It has stayed that way eversince. That was 6 years ago. I was diagnosed days after my 22nd birthday. I was 21 when I got it. Since then, I have married, and even had a baby. He s two and is perfectly healthy. My doctors told me if I ever got pregnant and needed chemo that it could be taken during the last trimester and wouldn't hurt the baby at all. THe best part about going through it so young is that you have a better chance of your body rebounding well, and with young children, mine don't remember when i didn't have hair. they don't remember me being ill at all. I still have the scars to prove it, but they don't recall it first hand. You will do great. Take all the rest you need. Remember your health comes first right now so you can live to take care of your kids! Good Luck. Elizabeth Elizabeth y Sun, 03 Apr 2005 00:00:00 GMT Hey, thanks for telling me your story. It sounds like you had a rough time. But, you made it throught it as I know I will. I had a treatment yesterday and they also did a chest x-ray and they said it showed a significant decrease in the size of my tumor. I was so relieved to know that the chemo is working. I too am a stage IIA. They said that I wouldn't have to have a bone marrow biopsy because it's very unlikely that it is in my marrow. I was relieved to hear that too. I guess after I am well, I will probably worry about a relapse, but I guess anyone would. But, it sounds like even if I have a relapse, I can still have a second remission. Thanks again for your story. Marcy T Marcy t. Thu, 07 Apr 2005 00:00:00 GMT I wouldn't worry about relapse too much. My first treatment was the radiation only, and the relapse wasn't in the area that was radiated...so I would imagine that if the chemo is working for you, you wouldn't have too much of a problem. I think the worst part is having to take the scans to make sure you are in remission. It is a test that you don't have control over passing or failing. LOL. It sounds like you are doing well and that your spirits are up about the situation. It is always good to try to keep them that way. I am sooo glad to hear your therapy is working and wish you lots of luck. Elizabeth Elizabeth y Thu, 07 Apr 2005 00:00:00 GMT Hello Luara, I'm 22 and was diagnosed with hodgkins a few months ago(stage 2a). I will have completed my 4th cycle of ABVD in 2 days(on my B-day)... The original plan was then to have 3 weeks of involved field radiation. Because of the tumor being in my chest, and the chances of breast cancer as well of other long term side effects, I wanted to avoid radiation if possible. We are now considering 2 more cycles of chemo instead. We still have to run some scans and I want to get a second opinion. Anyways, I was wondering if you had radiation? Do you have any advice? I hope you are doing well, let me know... God Bless Erin Erin22 Mon, 04 Jul 2005 00:00:00 GMT Hello Erin!!! So good to get a response back!! Happy Birthday if you get this by then!! Hope so!! :o) How are dealing with the whole aspect of having cancer? I was originally supposed to have radiation as well, but when my parents showed my oncologist an article they found about the long term effects of breast cancer etc, I had one extra cycle of chemo. I was originally supposed to have 5 cycles and then radiation. What did your oncologist say about having the 2 more cycles of chemo instead?? No, I did not have the radiaton....just 6 cycles (12 treatments) of ABVD. I would talk it over with your oncologist, and see what he suggests. Where is the cancer at?? I am doing good, have been in remission a little over a year now. Still tired, but what can you do? Let me know how everything is going with you!! I would love to be able to help you through this. Hope to hear from you soon! Take care and God Bless! -Laura Lulucincygirl Tue, 05 Jul 2005 00:00:00 GMT I am so sorry to hear about your cancer, but you seem very strong. I have a 17 year old friend who was just diagnosed with Hodgkin's Lymphoma. She also has a softball size tumor in her chest. She had what appeared to be a heart attack that led to the diagnosis. She and her family is at the shock stage as we all are. They are looking for the right doctors to treat her. She just had her biopsy monday.                                                    I want you to know my prayers are with you. Stay strong...Livestrong..Please keep in touch and I so pray all goes good.Margie  Greywolf2006 Fri, 02 Feb 2007 00:00:00 GMT Hi, I'm so sorry to hear about your friend. I am sure that once she starts her treatments she will do well. Chemo seems to just melt Hodgkin's tumors, even when they are that big. My tumor shrunk by 75% after only 6 treatments. I have been in remission for almost 18 months. I have a checkup in March. So far, every scan they have done since I finished my treatments have looked great. No cancer in sight. Tell your friend to hang in there and stay positive. If she needs any encouragement or support she can email me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I will answer any questions she has and lend a kind ear. God Bless! Marcy t. Fri, 02 Feb 2007 00:00:00 GMT