newly diagnosed

Nomy

Hi everybody hows it going. I just turned 23 and found out a couple months ago that i was diagnosed with Hodgkin's disesase. It was a big shock, I had this cough that wouldn't seem to go away, and was just going to the doctor to get some cough syrup. Anyways, I got admitted into the hospital, and at first the medical students were telling me that I might not be able to see next year, just by looking at my ct scan!!! Thankfully, they found out later that is was hodgkins and that it could be cured. My doctor said it could be cured, but I for some weird reason I don't believe him. I am currently on my 5th chemo, and am taking ABVD. I am not sure of the stage, I just know that it is mediastinal mass. My doctor is the type of doctor that doesn't answer that many questions, he just does his thing and gets out, they say he's the most experienced, ah well. I just had a question. I had a cough before chemo, and my dotors said after the first two chemo's the cough would go away, which it did. But, now during my 5th one, the cough is back, the doctor looked at my throat and said its just red a bit. And when I took zofran i felt burning in my lower chess. I was also wondering when they take CT scans or pet scans, shouldnt' they do it every 2 chemo's to see if it's working? I dont' know, any advice would be great appreciated. Thanks, looking forward to hear from you guys.

lhodnet

First off, you are going to be ok. BUT I would DEMAND to know your stage of cancer. I was 29 when diagnosed and I was a stage IIBX ( stage II, B symptoms, X means bulky mass) in my chest. I did the stanford V treatment and only received one PET at the beginning and one at the end. I also didn't have any CTs inbetween, but then again my treatment was 12 straight weeks and not 6+ months.

As far as your doctor being the type of doctor not answering your questions, write your questions down throughout your time off from him and then your next meeting with him, don't let him leave until all your questions are answered. Do you have any chemo nurses that you can call with questions about the zofran and your cough? Also, ask your doctor when will your next CT or PET be -

Unfortunately he cares about making you well, but you are your only advocate. I have found that if I want answers, I needed to sometimes be pushy and demanding until I felt comfortable with the information provided to me.

Good Luck!! And yes, Hodgkin's is definitely curable!! I have been cancer free for over a year and there are tons on this board who have been cancer free for decades.

Lisa

lhodnet

First off, you are going to be ok. BUT I would DEMAND to know your stage of cancer. I was 29 when diagnosed and I was a stage IIBX ( stage II, B symptoms, X means bulky mass) in my chest. I did the stanford V treatment and only received one PET at the beginning and one at the end. I also didn't have any CTs inbetween, but then again my treatment was 12 straight weeks and not 6+ months.

As far as your doctor being the type of doctor not answering your questions, write your questions down throughout your time off from him and then your next meeting with him, don't let him leave until all your questions are answered. Do you have any chemo nurses that you can call with questions about the zofran and your cough? Also, ask your doctor when will your next CT or PET be -

Unfortunately he cares about making you well, but you are your only advocate. I have found that if I want answers, I needed to sometimes be pushy and demanding until I felt comfortable with the information provided to me.

Good Luck!! And yes, Hodgkin's is definitely curable!! I have been cancer free for over a year and there are tons on this board who have been cancer free for decades.

Lisa

kiren

Shocked to hear that about your doc. Its your right as a patient to know what is going on with you. I would always write down my concerns and questions before seeing my doc so I don't miss out on anything. I was stage 11B. I had one scan done after 3months of the 6months ABVD regime. Infact I even asked for copies of my treatment plan in order to get a second opinion about my treatment and my doc didn't hesitate. You have to be fully satisfied with your treatment and your doc..it's your life after all!!

mc2001

kiren said:

Shocked to hear that about your doc. Its your right as a patient to know what is going on with you. I would always write down my concerns and questions before seeing my doc so I don't miss out on anything. I was stage 11B. I had one scan done after 3months of the 6months ABVD regime. Infact I even asked for copies of my treatment plan in order to get a second opinion about my treatment and my doc didn't hesitate. You have to be fully satisfied with your treatment and your doc..it's your life after all!!

Well said Kiren! I agree with that statement. Patients have a right to know their treatment schedules, medicines, records, etc.
-Michael (leukemia survivor)

Nomy

Hi guys, thanks for the quick response. Next visit, I am writing down all the question I have on paper, and not leaving until he answers all of them!!!

kiren

Nomy said:

Hi guys, thanks for the quick response. Next visit, I am writing down all the question I have on paper, and not leaving until he answers all of them!!!

Very good. I always did my own research while coping through cancer, and believe me it saved me alot of unnecessary trouble + I researched new methods of treatments before making any decisions. I always advice everyone to take it seriously and do the very best for themself.

Racht

Nomy said:

Hi guys, thanks for the quick response. Next visit, I am writing down all the question I have on paper, and not leaving until he answers all of them!!!

Hi there, new to this site and your message caught my attention right away. I just completed 6 mo of chemo and 4 weeks of radiation for stage 2b hodgkins. I also had the cough...no cough ever quite sounds the same after you've been thru this does it? I still have my cough though not nearly as much, they tell me that the inflammation (caused by chemo and then radiation) plus the fact that there is a huge amt of scar tissue there now will mean I'll probably always have some amt of coughing. So I know a lot of other people have already given you their thoughts, but since we have a very similar story I wanted to help put your mind at ease too...it's normal. Though I find the period of time between scans kind of odd. THey've been watching me very closely all along. I had the pfts (lung test) after every 2 cycles and the pet/ct after ever 3 (I had 6 cycles altogethr) now I have to go back every 3 months, but they didn't even want to wait that long before my next one. I'm having that in about 8 weeks. Stay strong. feel free and write anytime. I'll be praying for you!

soad00

I was 19 when I was diagnosed and had to leave college for a whole year. I had radiation to the neck, chest, and stomach. It started with an appointment with a thyroid doctor, my mom had hypothroidism and they thought I had it too. I had a lump and was tired a lot, but the doctor said NOTHING and let me go, no thyroid medication, nothing! I got a bad cold a few months later and my GP noticed the lump that the other doctor dismissed in my neck!!! It was a shock to the family especially since my mother had just survived breast cancer two years before... We never thought two people in one family would get cancer so colse together in time. I've been in remission since spring 2000. I am graduating from university this spring, I am engaged, and I'm 9 weeks pregnant!!! We have our first ultrasound in March and are anxious to see if everything is ok... Hang in there, I did, and I am doing great...