Newly diagnosed

milasmom

I'm 27 and newly diagnosed with Hodgkin's stage 2A. I found out on Feb 1, and have already had two chemo treatments. I didn't bounce back the second time as quickly as I did the first time. Is it going to continue getting worse? My treatment was on Tuesday and I was feeling pretty much back to my old self by saturday. I also noticed more hair falling out today. Is there a time frame that it all falls out if it's going to? Many of the people I know that have gone through the ABVD treatment said theirs just thinned. I don't mean to sound vain, but I just would like to know what I should be expecting. Loosing my hair is a small price to pay for getting my health back, but worrying about all the hair that comes out when I shampoo it sucks. I'm also nervous for the reaction my 18 month old daughter will have. I'd also like any advice that anyone can offer. I know I'm going to beat this, but any tips to make it a teeny bit easier would help. One last thing, did any of you worry that your pregnancy is what brought this on. I worry about that, and, if I'm able to have more children that I'll end up getting it again. Am I crazy???

karieallen

hi, milasmom...I hope that you are taking care of yourself through treatment...and hopefully you will tolerate the treatment well, and be as healthy as you can be through the whole thing.

first of all you are not crazy or vain to have all those thoughts. I'd say it's normal..and yet remember that your experience will be uniquely your own, so there could be individual reaction or variation to the treatment. there is no script.

for me, I lost about 80% of my hair, slowly over the course of the treatment. I also had stage 2A..(which was 8 total treatments of ABVD) however I was told that hair lost would be "minimal"..

your doc will be able to address your questions about fertility..

and as far as tolerating the chemo and bouncing back...the chemo's effects are acculumative.. so my experience was that slowly I was more tired with each one.. But have to also say that I was able to work part time through the whole treatment (chemo and radiation).. my advice is just listen to your body. really listen. rest when tired, eat when hungry.. .. find a relaxation that works for you to help with the whole thing.. I took up meditation, esp right before chemo. tht really worked for me.

best of luck to you!
Karie

lozza

Hi, it sounds like you're coping really well already. I don't think I could manage an 18month-year old, hodgkins or no! I had stage 2B, 6 cycles of ABVD and radiation (aged 25, found out Feb'04). My hair started to fall out after 2nd cycle (had it cut short to lessen shock and reduce chance of losing all). By the 3rd/4th cycle I was losing a lot of hair and thinning on top quite noticably. I probably could've gotten away with hats, scarves etc, but I live in a hot country and didn't want to not have the choice. Also, I hated waking up to hair on my pillow and having it come out in the shower, so decided to take control (aka Samantha-Sex in the City) and shave my head. I got the feeling less fell out after this, though. Perhaps as it was so short I didn't notice, or perhaps it stopped coming out. Either way, shaving my head worked for me...it was quite empowering. By the way, I work with kids. Youngest being 4/5yrs. I went to school wearing hats/scarves and sporting very short hair (but not shaved). Biggest reaction was to laugh, no one was upset by it. I've found that children are better at dealing with this type of thing. If you look silly they'll tell you, but by the same token, they don't really care. Hopefully this will stretch to you daughter's age. Can't comment on the pregnancy issue, but just to say that I thnk it's quite common to look for all sorts of reasons why it happened. I'm sure your pregnancy had nothing to do with it. I've read about lots of woman who go on to have families (without relapse). Talk to your docs or check out the chat rooms - they'll allay your fears. Anyway, good luck. Sometimes you might feel low. For me it was about half way through chemo, I lost all energy and had to stay in bed for 2days. I was worried it was the culminitive effects of chemo, and I was only half way through! But I never felt that bad again. It taught me not to push myself (I was working increasingly longer hours).The actual process of chemo got worse, but not the side effects. i.e. it took longer going in. If you're in a position to rest you should. I have to say I lived like a lady of leisure whenever possible - facials, massages, shopping and yoga. Do what you can, if you have people around to support you, let them know what they can do to help. Take Care.

summer05

Hi MilasMom
Same here, Hodgkin's 2A. Found out in Nov, have had 4 treatments so far. I went for a short hair cut even before I started chemo and then yesterday I shaved my head. I agree w lozza - I like the feeling of being in control. With cancer and chemo it easily feels like we have nothing wiht our health to do. But we do have a huge impact on our well being. Try to be strong. I have 8 more treatments - no radiation - and I can't stand the thought of it. But I'll have to. It's for surviving.
Best of luck to you.

josiesue

milasmom,
I was diagnosed with stage 1 Hodgkin's in April 2004. I had 4 cycles of chemo and 1 month of radiation. I had a very difficult time the first month adjusting to the chemo, I had ulcers on my tongue and couldn't even drink water without it burning however everyone is different with the effects of chemo. You sound like you are doing ok with it which is great! I also was on abvd and opted to shave my head and order a wig for the purpose of looking professional at work. I also got married in June so I wanted to have hair for my wedding, which I was not putting off due to my illness. I also took the approach of "taking control" and not letting the cancer determine certain things in my life such as the loss of my hair. I have a nephew who was 3 years old when I lost my hair and it did not even faze him, I believe he thought that I just got a haircut. The poor kid one day I would have my "long hair" wig on and the next I would have a scarf and yet the next I would have "charlie brown" hair, I mean how confused can you make a 3 year old kid?? You will probably have good days and bad days, I ended up being able to log the good and bad days. Usually I was ok until the third day after my treatment and that is when my energy level dropped. The sad thing is that the tiredness is not something you can sleep off , I spent many a night sleeping on the couch on and off while watching TV during my awake hours. I did end up working about a 36 hour work week on an average. The treatments get easier alot of time I felt like my body just got used to the treatments that were injected into my body. I have never been pregnant so I am not sure if that can bring on Hodgkin's or not. I could not get an answer from my doctor as to what causes this. I am a person that hardly ever got sick before this illness. About a year earlier I had strep throat and I thought that maybe that might have caused a "bad cell" to start forming. But I also believe that our enviroment causes alot of cancers. I was asked all the normal questions such as: did I live by power lines? which I don't. I was put on a shot called Luperin which is a form of birth control. It allowed my cervix to close so that the chemo did not effect my overies and would allow me to have children in the future. Obviously it was one of the first questions I asked since I was getting married. My oncologist reassured me that there have been many people that have had healthy children after their diagnosis and I have talked to others that have gone through the treatments and have had a family afterwards also. I do have to wait a full year after my treatments to try to conceive so that my body is back to its "normal" energy level. Since my illness I have found a clarity that I have never known. I find that I do not stress out over little issues as much and that I really watch what is going on with my body. Good luck to you. If you have any other questions that I can answer don't hesitate to ask.
Josie

kiren

Hi, just to let u know that I have been through it all too. I was pregnant at the time when I was diagnosed with HOdgkins stage 2-B. Got 6months ABVD and radiation. I am doing good now. I don't know whether there is a relation between Hodgkins & Pregnancy but I have read on this site about survivors who were pregnant when diagnosed. Could be a coincidence! Any way just make sure you keep up good sprirts and focus on getting better. Good luck

lhodnet

Hello - my name is Lisa. I am a HD survivor. I was 6 mos pg when they found a mass in my chest through an xray. my daughter was 2 mos old when i was Dx. I feel your pain.

I was DX with HD, NS, Stage IIBX (X=bulky) I went through the Stanford V treatment b/c of the size of the tumor and b/c it was the best solution for our family.

My hair started really thinning by the 6th week (Stanford V is 12 treatments weekly) and I just couldn't take it anymore with my baby pulling out fist fulls. So we put her on the floor in the bathroom and then shaved my head. My hubby shaved his too and she thought it was funny. (she was 4 mos by then)

Kids really are resiliant. Your baby will love you all the same. Just make sure to include your baby in everything you do

I really sympathize with you - and my thoughts and prayers are with you and your family.

If you need someone to chat with, please feel free to email me at lisa@robhod.net.

As for the pregnancy, I know for a fact that for me it didn't as I had typical symptoms for at least 3 years prior to this. HOWEVER, all my dr's stated that pregnancy speeds the process up if you have something wrong with you.

You are not crazy. I actually have my 6 mo check up this friday and i plan to ask my dr when we can offically try again. Am I afraid? Yes. I think I always will be.

Lisa

pjm

Hi i am 27 i was diaginosed last year when i was 6 months pregnant, i also have a 6 yr old and a 5 yr old so i no how you feel. i started my chemo three weeks after having my baby my hair started falling out and i made a joke out of it and my older sons although thought it was strange they laughed with me.I was told my hair would all go but only majorly thinned NOT PRETTY THOUGH but there are good hats and scarfs out there go and find one before it gets too bad.i got the all clear a week before christmas best pressie ever hair is now thickening up and about three inches long had last treatment in november,still hate it but i did have really long hair before can't wait for it to grow back.

About your quirey about hodgkins being linked too pregnancy i believe it is just that it is the age it is linked to more and thats just when women generally have kids,from what i have read they believe it is linked to a virus but no one really truely nos
GOOD LUCK and be stronge x x x

KyLibrarian

I am 31 and was diagnosed 2 years ago--at the time I had a 6-month-old daughter and my lumps first appeared during pregnancy, so I too have wondered if there is a relationship. My doctor says there isn't, but I am scared to try again for now.
My hair loss was very gradual and wasn't total--I guess I lost about 75%. I shaved my head after the 2nd treatment because that's when I really noticed it coming out on my pillow and in my hats. I alternated between two wigs and different hats depending on my mood, and just kept shaving my head down to almost nothing so I wouldn't have to clean hair from everything. My husband shaved his head whenever I would shave mine, and our daughter didn't seem to mind.

I never stopped having periods, they just became irregular, so I have been assured I am still fertile. I know this isn't true for everyone, but my doctor said if you start treatment when you're under 30, your chances are greater of keeping your fertility.

Keep up you spirits; it sounds like you're doing well.

ClaudiaZ

josiesue said:

milasmom,
I was diagnosed with stage 1 Hodgkin's in April 2004. I had 4 cycles of chemo and 1 month of radiation. I had a very difficult time the first month adjusting to the chemo, I had ulcers on my tongue and couldn't even drink water without it burning however everyone is different with the effects of chemo. You sound like you are doing ok with it which is great! I also was on abvd and opted to shave my head and order a wig for the purpose of looking professional at work. I also got married in June so I wanted to have hair for my wedding, which I was not putting off due to my illness. I also took the approach of "taking control" and not letting the cancer determine certain things in my life such as the loss of my hair. I have a nephew who was 3 years old when I lost my hair and it did not even faze him, I believe he thought that I just got a haircut. The poor kid one day I would have my "long hair" wig on and the next I would have a scarf and yet the next I would have "charlie brown" hair, I mean how confused can you make a 3 year old kid?? You will probably have good days and bad days, I ended up being able to log the good and bad days. Usually I was ok until the third day after my treatment and that is when my energy level dropped. The sad thing is that the tiredness is not something you can sleep off , I spent many a night sleeping on the couch on and off while watching TV during my awake hours. I did end up working about a 36 hour work week on an average. The treatments get easier alot of time I felt like my body just got used to the treatments that were injected into my body. I have never been pregnant so I am not sure if that can bring on Hodgkin's or not. I could not get an answer from my doctor as to what causes this. I am a person that hardly ever got sick before this illness. About a year earlier I had strep throat and I thought that maybe that might have caused a "bad cell" to start forming. But I also believe that our enviroment causes alot of cancers. I was asked all the normal questions such as: did I live by power lines? which I don't. I was put on a shot called Luperin which is a form of birth control. It allowed my cervix to close so that the chemo did not effect my overies and would allow me to have children in the future. Obviously it was one of the first questions I asked since I was getting married. My oncologist reassured me that there have been many people that have had healthy children after their diagnosis and I have talked to others that have gone through the treatments and have had a family afterwards also. I do have to wait a full year after my treatments to try to conceive so that my body is back to its "normal" energy level. Since my illness I have found a clarity that I have never known. I find that I do not stress out over little issues as much and that I really watch what is going on with my body. Good luck to you. If you have any other questions that I can answer don't hesitate to ask.
Josie

Hi Josie

I am particularly interested in what you have written as you said that you have not yet had children.

I was diagnosed with stage 3B Hodgkin's Disease about 2 months ago, which came as a huge shock to me as I am only 25 and fell healthy. I have lots of smallish sized tumors in my neck, chest, abdomen and spleen and I have been put on a course of 6 cycles of ABVD.

I have just completed my first cycle and have not (yet) experienced any noticable hair loss.

My concern is that I have not yet had children and have always dreamed of having a family. I would be devistated if I was told that I could not have children. I expressed this to my doctor but I was never told of any shot that could protect my ovaries so I just went a head with the treatment and now that I have not received my period I am begining to become very worried that my fertilily may be affected.

When did your doc put you on to the Luperin that you mentioned? Do you know if it would be too late for me to try that after already having 2 treatments of ABVD?

Also, has anyone out there experienced swelling and extreme pain in the arm that the ABVD is administered through? I have noticed this both times, although it usually starts up days after the treatment and can become very painful and keep me up at night?????? if so has anyone any remidies????