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newly diagnosed

trenda
Posts: 1
Joined: Mar 2004

i was diagnosed 03/08/04 with h.d.nodular sclerosing. ive had a bunch of tests to find out what stage im in-i go for my bone marrow biopsy & pet scan 03/22 and start chemo 03/23. so far my symptoms have just intensified with time-tired most of the time, but sometimes i have pretty good days. biggest problem is:itchy dry skin, and very tired no matter how much i sleep,but i also have trouble staying asleep even with meds. i have a tumor bout the size of a softball around my throat that makes me feel like i have something stuck in my throat all the time.im just wondering what to expect,i know everyone reacts differently..im just scared that im not mentally ready to start tx,can anyone tell me-are you ever Ready to start??also, i have 2 children, my teenage daughters taking it the hardest-any ideas on where i can get age appropriate info for her?
thanks in advance

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

Wow! I know how you feel. In August of 2000, I was diagnosed with the same type of Hodgins, and had all the same symptoms. I was petrified for myself and my kids. I have 4 boys and the youngest at the time was my daughter who was 12. She took it the hardest.

First, you need to know that although NO cancer is a good one to get, Hodgkins is very treatable with a well over 90% CURE rate. They don't even call it remission, they call it curable. Your odds of living a long, happy, healthy life are really great!

That said...no, I don't think you can really ever be "ready" to start treatment, but once you have the first one under your belt, you will better know what to expect and how your body will react to the chemo.

The fact that you are not sleeping well is no surprise. You are nervous wreck, no doubt! Don't be afraid to talk to your doc about this. I was really stubborn about trying antidepressants. Let's face it, this cancer stuff IS depressing. I suffered needlessly for a while and then took the plunge on the meds. They helped immensely. But I can also tell you, that once the testing was all over with so I knew my stage, and what the treatment plan was going to be, I slept a lot better from simply not worrying so much.

If you want to talk feel free to e-mail me at home dramerth@msn.com

Hang in there. You can do this.

positive
Posts: 75
Joined: Dec 2003

Hi there, My dad was diagnosed with stage IIA nodular sclerosis,
he's age 71 and he is going on his 6th treatment of ABVD. He has alot of fatigue, but he seems to be doing pretty well. My suggestion is to be educated about the side effects, so if you experience one you can deal with it better. Please know the more serious ones mentioned are not as common as maybe feeling fatigues nausea or hair loss. The good thing is that any side effect can be treated. My dads chemo treatments are uneventful. These anti-nausea medications work well. My dad never threw up. buts feels quessy. They gave my dad a very good prognosis and he's 71. Keep the positive outlook and try not to be so nervous the 1st day of chemo, its not that bad. No one says its going to be easy, some rounds are better than others. You might feel more tired than others. The good thing is that it is a curable disease. You were not given a death sentence and you are young and you will survive this disease, you'll see. Good luck and I hope everything goes well for you.

Heatherjb
Posts: 27
Joined: Feb 2004

I wish you the best of luck. What you are starting is not easy, but it is well worth the fight. I was stage IIA Hodgkins Nodular Sclerosing. I had 4 months of Chemo and 6 weeks of radiation. I have been cancer free for 18 months now.
I had a lot of trouble sleeping before and during treatments. I did not take any antidepressants, but wish now that I would have asked for them. My Oncologists is very conservative and did not want to put me on a lot of medication. I got so sick during Chemo that I finally ended up on an Anti-psychotic medication to help me sleep all of the time.
I also had a tumor on my neck that was moving towards my voice box. The tumor was large and went from my shoulder bone all the way to my sternum. It was actually a relief to get through the first few chemo treatments because it really shrunk a lot during the first month.
I don't think anyone is mentally ready for this. It was a huge shock and I cried a lot. Try to set your mind to fighting the cancer. There is a book that helped me a lot during the first few weeks. It is called Love, Medicine and Miracles by Dr Bernie S Siegel.
I have been trying to help a 14 year old boy who has Hodgkins Lymophoma also. I have found through my experiences with him that kids react very differently to cancer. I think the best thing you can do it educate your daughter about the cancer. Let her read about it on the internet. Also, the local cancer center here in my area has a support group for kids who’s parents have cancer. This may help her the most since she can talk to kids her own age who may be going through similar things. There are also a lot of on-line resources for her. Just remember that she has to go through the process in her own way and the anger part may take longer for her to get over.

I wish you all the best.

denolan
Posts: 3
Joined: Mar 2004

hi, good luck. i had nine months of ABVD and radiation ten years ago at age 50. i'm doing just fine today. what helped me was to plan activities to do on good days. just simple things, not scheduled for a particular date, but could be done on any day that i felt good.
i was lucky that my children were grown and never expressed doubt that we would beat this.
one of the funny things that happened to me was my sense of smell became very acute after several treatments. someone could open the refrigerator door and i could identify everything in it from a distance. it went back to normal after a few months.
good luck and remember, you'll be back to normal in a short time.
smiles, don

Ronnie10
Posts: 20
Joined: Jan 2004

Hey. I have Stage 2B Hodgkin's. The word you need to remember during all of this is CURABLE. That is what your cancer is....very, very curable. When I was diagnosed my doctor said to me "We are going to get rid of this, and not only into to remission, but it is going to be gone for good." I have had 10 treatments so far and guess what....it's already gone. I have 2 treatments left and then some radiation just to make sure it will never come back again. I am not going to lie...it will be hard getting through the treatments. BUT, nothing was ever as bad as I imagined it would be. I had this horrible image in my head at the beginning of my 6 months. But it never got that bad. I still go to work and school on my good week. Just make the best of when you feel good. That is very important. So then your sick days won't feel so overwhelming. Also...I know you may not believe it. But I remember when I got diagnosed 6 months seemed like an eternity. Starting at 1 of 12 just was awful. I CAN NOT BELIEVE THAT 11 IS ALREADY NEXT WEEK. Believe it or not, time does actually go by. It won't last as long as you may imagine. Just keep a positive attitude and good people around you and you will be fine. Please e-mail me if you want to talk or have questions. Good luck...and remember...you will be telling the story a very very long time from now about how you beat this...and you will be a better person for having to go through it. God Bless You!

Chemosabe02
Posts: 7
Joined: Mar 2003

I was Stage II B when we first caught it. Today I am in remission for 9 month, I went out and jogged 4 miles at lunch. When we started my lung capacity was way down and I couldn't jog 5 minutes. So, there is hope. When I started chemo the nodes were choking me, I couldn't breath right. After only a few treatments my breathing improved. All I can say is "look at your children and you will muster the courage to beat H/D." It will not be as bad as you think. You will have good days, medium days, and some bad days. Keep a journal. Also, my doc let me fax him questions and he wrote back on the fax. I found that I could not take enough notes during our office calls, so the nagging questions were handled by faxes. Write things down and send them in. Also if you want to ask me any questions, feel free. My address is mclivertyd@cox.net. I know everyones' situation is different, but I may have learned some lessons that will help with your battle. It is only natural to be afraid, to cry, to wonder "why me?" Just know this, there are a lot of us H/D survivors out here pulling for you. Oh yeah, on the sleeping, sleep when you can. Your sleeping patterns may be out of whack. Read when you can't sleep, pick inspirational stories. I became a Lance Armstrong fan, I watched him everyday. He even wrote to me, after I read his book I sent him an e-mail, and he answered it! Good luck in your battle, you will beat this. Trust in your doctors, your family, your God, and science.

Gatoreaves's picture
Gatoreaves
Posts: 3
Joined: Apr 2004

I was diagnosed with H/D NS Stage 2B in January of this year. I'm sure we had similar testing done and I don't know about you, but my least favorite was the bone marrow biopsies! I had trouble sleeping and as soon as I mentioned it to my doctor, he prescribed sleep medication which worked wonders!
About the dry itchy skin, I sell spa-grade products that are 100% natural. Once I was diagnosed however, I found two products within the product line that I love using. The first was a freshening mist - to me, it feels like first aid in a bottle! It has no alcohol so no drying agents and feels cool when applied (when I have hot flashes, I use this as well)! I would spray it where I'm itchy then apply a thick layer of lotion - should apply lotion immediately so the skin absorbs both. The lotion is a nourishing moisturizer specifically for dry skin made of vitamins B5 & E and azulene (chamomile-derived). I also use the skincare line (freshening mist I use as a toner) for my face & with each visit, my doctor is always amazed because (despite my hair loss) he says my skin is fully hydrated. Because chemo is so drying, I changed my facial moisturizer to the nourishing moisturizer for dry skin My oncologist & the nurses refer other patients to me because they can't believe how healthy my skin looks. Not only is the stuff soothing, it smells just wonderful and helped me maintain my self-image because I couldn't make it to the spa often but I was able to bring the spa home! Feel free to reach out to me for further information or take a look (www.mysensaria.com/aileeneaves) - I know the itching was a huge issue for me so I'm sharing as much as I can. Also, as I received more chemo treatments, the itching really diminshed intensity. Good luck!

ahendry
Posts: 1
Joined: Jun 2004

I was also diagnosed with the same Hodgin's disease. I just found out 3 days ago. I am 26, no kids, not married. I have a bofriend also trying to deal with this life changing event. Any tips, questions maybe I should ask my onocologist. I had three tumors in my neck, one has been removed. We are not sure yet if I have any more in other places. I do not have any symtoms that I am aware of yet. But, I can relate to having good days and bad days. Any advice?

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