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Hodgkin's Lymphoma diagnosis (im new here!)

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

 

Hiya,

Been diagnosed with Hodgkin's Lymphoma. Staging is complete - its 1A limited disease. (My CSN space has info on my journey so far)

Can't wait to start treatment next week, but i am a bit nervous. Thought of having a PICC line in and possible complications is more stressful to me than chemo itself. Egg collection was wednesday. I do want to have a child of my own but im not freaking out about that exactly; not yet anyway. lolz Haven't cried since diagnosis or learning id probably lose my very long hair :( poo! Ive been really upbeat and my husband thinks im weird hahahha :-D The fact that its early stage means that this will be bearable for my family. Whew!

Some ppl don't know how to respond to me because - i dunno - im supposed to be in pieces or something!? Sometimes i think that some of my friends would be happier if i fell to pieces. You quickly learn who your friends are; that u have way less that u thought previously. Why is it that if im not crying some people are unable to show compassion!?

Its a little scary. I can't be completely freaked out because that wont change a thing! I have cancer! Ive only had good news since my 'bad news' so i feel very fortunate. I came on here because i need to talk to ppl who understand what this is like, and won't patronize me..... I was so upset when i called a cancer support network the other day explaining my situation and i happened to mention that i had 2 very small fibroids and was told that 'she' was so sorry im having all of these medical problems and that it must be so hard on me!!! She blew my secondary condition out of all proportion and that can be very overwhelming and upsetting for someone who is dealing with a cancer diagnosis! Yes i have fibroids but its not an immediate concern and i dont need to cry over it today! I need to get through chemo and radiation. Im moaning aren't i?

Im incredulous at times. Its like, "i have cancer and im going to have chemo and be bald!"

I was prob have 2 -3 cycles of ABVD then some radiation. :-)

 

PS: reading some of your posts gave me great strength these last few months. Thank u! Thank u! Thank u!

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Amanda and welcome to the group.  You'll find caring and supportive folks here and we do get a little crazy sometimes ;).  Attitude and humor are  free weapons in this battle and it sounds like you have no lack of those :).  I read your CSN space and thanks for sharing that.  Please know you are not alone and this is a place where you can come to vent, ask questions, offer support/encouragement and just share. 

I'm sure you will hear from others soon.  You're not weird for not "falling to pieces" and if you do, we're still here.

Hugs - Jim

 

 

 

 

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Awesome! Thanks Jim!

Was so nervous! Convinced myself that nobody wld reply hahahahah! Yeah  imma hott mess, but im proud of that fact! :-p

Was reading another member's comment and i 2 hav been trolling this site and u hav no idea how much it has helped me to come to terms with my diagnosis. Also, when i was awaiting results of my PET and CT scans for staging purposes, this forum was a lifesaver.

I hav to edit myself when im with 'friends' so as not to bore them, but here its ok to 'obsess' about cancer, i guess :-D

I called my mum when i got my chemo date (Aug 28th) and i was so excited.... she was baffled and called me crazy. hahaha

Ive never had chemo so i guess its a bit of an adventure.

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

Welcome....You will find quickly that on this website and with people you meet that are getting chemo as well will be your most comfortable spots now. The stuff you are describing is exactly how i felt a year and a half ago when I was diagnosed. Normal will never be the same for you as before your journey, just accept that you now have a new normal and will propbably find stuff out about yourself that you never knew before. Cancer is definitely not for the weak, you have a fighter spirit. I have a friend whom had breast cancer twice and when I got diagnosed I told her it was the "in" thing to do and all the cool people had cancer so I wanted it too...I myself have almost waist length hair and did not lose it from my treatment regimen, which is different than yours however, mine thinned but I never had a bald or bald looking spot <===Blessed. Some people think the thought of losing your hair is selfish, stupid, vain, etc. but it is part of who you are and i totally get the uneasiness of it. Probably everything you are thinking we have all thought atleast once or twice, just some of us won't admit it publically, so do not be afraid to be open and share. The people are very supportive, compassionate and intelligent about Cancer and treatments on here, it is kind of like a family and they check in on you if you stay away too long** that was my disclaimer, make sure you check in regularly or Jim and Max will be hunting you down.

Stay Strong in Mind, Body and Spirit

XXXOOO

Carie

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

You sound like a warrior. Just take one day at a time. Enjoy the good days and don't think too far ahead and keep laughing as much as possible. I found laying around in one spot made things worse on the bad days. So I laid around in different places. Outside in the shade, or in the living room. Keep moving on the days you can. Long walks are great. With your attitude, you are going to do great!!!

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Thank s for the vote of confidence Jeff. I hav a really mad laugh and it hasnt deserted me yet. Strange how everything has changed though nothing has changed.

I wanna go got walks on the days im too weak to do much else - thing is - im not self motivated. I joined a ladies bootcamp last december and its the only reason i exercise! Its so exhilarating. Lost 1.5stone in that time. I love it but the days that i dont go im a total vegetable. *giggle* My onc says its ok for me to keep going to bootcamp as long as my white blood count is up so yaaay me!

PS: i totally cried b4 diagnosis when i was worrying that i wouldnt b allowed to bootcamp if i did hav cancer.

Chemo has its downsides but i cant wait till the lymph nodes in my neck start to wane; someones been choking me for months! :-p

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I felt the same way. I went through abvd as well. If u want to read about my journey you can find it at www.olympiajeff148.blogspot.com I have written down what has helped me Through the journey. It's not easy, but it's not terrible if you have support and take one day at a time. 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Big congrats on completing chemo #8.

Have u posted about ur scan results yet?

Will be praying for u :-)

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Scan this coming Friday then Dr. apptoiment the following week. I'll post soon after.

illead's picture
illead
Posts: 873
Joined: Aug 2012

Sorry I have taken awhile to welcome you.  I am sorry that you are having to go through this but I love your attitude.  Yes, this is all very difficult and chemo is no fun but it is a lifesaver.  I can see you being a real cheerleader at your cancer center Laughing.  Stay positive and always try to see how you can benefit by this journey.  Hopefully you will be able to help others even in small ways.  We are hoping you will do well, there will be plenty of down times but you are welcome to come here with your thoughts, no matter what they are.   I am the caregiver so I know that right now your husband and family and friends are very scared and they don't quite know how to react.  So keep up the fight and know that we are here always.  Welcome again to our new friend.

Our thoughts and prayers,  Becky

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Saw ur post before Becky and Natasha but was a bit mental that day and couldnt finds the words..... Thank u all so much. lovely to see u all. Feels like i know u guys and we are the best of friends! :-D

Hi Vinoth. Hi Carie! Pinkies crossed for u Jeff!

So here goes.......

PICC line was wednesday and was waaay better than i thought it wld be. Julie was amazing and reassured me. Cant even feel it and no infections.

Almost blubbered when i sat in my chemo chair lolz. Then was told the pharmacy had received my chemo and i got all excited and forgot to cry. My husband Jason was with me for the beginning and end. He has to work and keep us going. I love him. :-) Chemo was fun! hahahahahah i know thats weird but.. It was exciting!!! I read a book of short crime stores from like a 100 years ago - so cool - drank lots of water, had my lunch then got bored. Absolulty no side effects so far. No nausia. Came home in a really good mood and did lots of tidying around the house. Was bouncing off the walls. Prob the steroids!!

On steroids (Dexamethasone 4mg) for 3 days. Think my onc is worried about blemycin's effects on my lungs.

:( today im a total nightmare though! been picking fights with my friends and family. :-D so naughty of me! Nothing major, mind u. Yup. So if neurosis is a side effect of ABVD then ive totally got it!

Hopefully i'll behave after this. Coming on here usually has a positive effect on me.

Glad chemo is not such a scary, unknown thing anymore.

Amanda

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3646
Joined: May 2012

Amanda, I am late to your conversation, but have been reading your story since your first post. You are a winner !

I did 12 infusions (6 "Cycles") of ABVD five years ago.  The side-effects vary dramatically from person to person, and usually are a bit easier on younger patients like yourself. I hope it is smooth sailing for you, but if not, I have been reading pretty extensively about ABVD for many years now, and would love to answer any questions if they arrive. ABVD is a very common therapy for Hodgkin's, so a lot of folks here have experienced it.

max

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

:-)

Happy to report no major ill effects. Well, its the really embarrassing one that ive got anyway. Stoopid steroids! lolz

Chemo #2 was thursday and i felt some fatigue but ok otherwise. My mouth feels like ive eaten cinnamon lolz. Not the flavour just the mild burning/stinging sensation. I get very very moany on days 2 and 3 thought. My poor darling husband!!! :-D

Can't seem to focus on anything!!! Do i have chemo brain? Im usually very talkative and now i struggle to string basic sentences together (reason i haven't been on here much)

My bloods were completely back to normal (like pre treatment) on thursday and my neutrophils hadnt dropped dramatically the week before either, so im very lucky. Nurses said it will prob be a trend throughout the rest of my treatment.

Thanks you guys for all your support and kind words :-)

means a lot

 

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Hi Amanda,

 

Just like you, I'm kind of new to this forum but already on my second ABVD cycle, round 4 and can tell you a little bit about my experience so far.

I finally filled out "About me" page and you can find out about my diagnosis there ( one of the steroids they give me has the insomnia side effect, so I'm up at 3 am) but here I'll tell you about the chemo side effects. I had my first chemo on July 15th and it went better than what I expected. I was able to do things right after, even went to one of my favourite italian lunch places with my husband after but I couldn't really enjoy the food. Everything tasted weird that day with exception of fruit. I got the severe weakness, shaking and fatigue on days 4 and 5 but no nausea, constipation or mouth sores. I felt much better the fallowing week and was even able to go to the GYM but came home crying the first day. I couldn't do much so I tried not to push myself as I used to (I just had a baby and was still recovering from the C-section). So now I do alllot of walking and if I feel up to it, I go to the GYM.

Chemo #2 was a little harder. But I only had the same side effects with the exception of feeling tired for longer and got numbness in my fingertips

Chemo #3 harder on me than the first 2, I guess the more poison enters your body, the worse you feel.

Chemo #4 today, worse so far. First time some nausea and feeling tired and weak already. So far I didn't loose my hair yet  but I'm starting to loose some every day. I had long hair and wanted to shave but one of the nurses suggested I just cut it shorter in case I'm lucky and don't loose it all. I only shave once a week now and there is hardly any hair growing which I'm happy about.

I like the fact that you are staying positive, continue that way because it helps. Good luck and let us know about your journey and let's hope you have an easy ride! :)

All the best,

Natasha

P.S. It is also OK to feel sad, cry and feel sorry for yourself as long as you feel better after.

 

vinslymphoma
Posts: 24
Joined: Feb 2014

Hey Amanda,

Just saw your post and you know what..i was almost having the same attitude as yours..was weeping before diagnosis..but once it was all confirmed..i just became stronger and felt that i have to fight this out and find best ways to treat..interestingly one thing that i found is..95% medicine that cures or keeps you going is YOU and your will power and strong positive mindset to face and handle the hurdles...5% is medicine...only if your body and mind is ready to cope up, the medicines work out best... :-) i was at 1AE and i guess you will be alright with lesser than the standard number of cycles...:-) but dont just be curious about it..be ready to face little side effects n accept it...all the best !!!! 

 

Cheers

Vinoth

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Haven't heard from you lately. Everything going ok?? Prayer requests??

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Treatment is going well and is more than bearable. Prayers are always welcome and much appreciated, especially for Jason as i feel it is harder on him. But, we are happy and still laughing at life i guess :-)

went to my ladies bootcamp tonight and it was fab!

Wishing u wellAmanda

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Glad things are going well. Prayers are coming your way. BOOT CAMP??? AWESOME!!

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Like i said to another member while complaining that one of my doctors recommended i 'take it easy'! Wat am i supposed to do? Sit at home and obsess about cancer?? O hells no! lolz

Ladies bootcamp is great and pushes me to actually exercise :-) not really self motivated. There is the social aspect as well. I need this, otherwise i WILL hav a total meltdown! Docs just dont get that. I do go for walks/runs on days when my neutrophils r low so i can maintain a modicum of fitness.

Again, so happy bout ur AWESOME news. Yaaay!

Stay cool

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

You are motivating me. I was super man before this "thing." Running, biking, swimming, strength training. I tired to do a mini workout during my chemo and was shut down about 3/4 the way through. You are doing boot camp!!! AMAZING. Now I need to "slowly" get back on my routine...after my stomach heals from surgery!! You are an inspiration!!

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

How are you doing Amanda?

Have bee think about ya. 

 

Hope to hear from you.

 Hugs 

GG

 

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Always thinking of u 2. Follow ur posts often to c how u r.

Strange how i can feel so connected to someone ive never met! :-)

*Cudwles*

Amanda

NANCYL1
Posts: 289
Joined: Jun 2012

Friends can be very helpful.  But some just do not know what to say.  Others "hang tough" and perhaps have not ever gone through a very bad time.   I think only those who  have walked a mile in your shoes can really understand.  My relatives live at a distance and do not seem to realize the necessity for  backup re phone or email.  So I don't hear much from them .

When I first got the lymphoma news I was laughing a lot trying to get through the bad news.  I seem to be able to go through emergencies quite well and "fizzle" later.

I had about 2 years of Rituxan infusions, which usually does not cause loss of hair.  I wonder whether there are any others out there that would not cause hair loss.  It is not frivolous to think about your hair.

I wish you well and get back to us.

Nancy

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3646
Joined: May 2012

Nancy,

About half of all chemo drugs cause hair loss, and about half do not, so it is sort of luck of the draw (there are well over 200 FDA chemo drugs now in use). Hair loss was the least of my worries on treatment, but I undetstand it affecting women more seriously than men. I wore a hat all the time.  If I were a women I would get a wig, but that is just me speculating on what I would do in a woman's shoes, bald from chemo.  Since most lymphoma cocktail treatments contain three or more drugs, most lymphoma patients lose their hair. But, even on drugs that ordinarily cause all hair to come out, some folks do not.  No rhyme or reason that doctors understand.  My next door neighbor is over half finished with 8 months of R-CHOP, and has not been bald too long, so it was slow-working in removing his hair.  Also: Hair loss is UNRELATED to how well a drug is killing cancer.

My mother-in-law told me once when I was on treatment "lots of men shave their heads, it looks handsome."

I told her:  I have no eyebrows, no eyelashes, no hair anywhere. I do not look like a guy who has shaved his head. I look like a person on chemo."  There is a difference; it is not the same look. And it is painful, emotionally.

max

SherryB
Posts: 2
Joined: Sep 2014

Was as bald as an eagle and I mean everywhere lol.  96 lbs..yuck but I looked good bald...nothing like some makeup..bright lipstick, some blingy earrings and off I went.  I just don't know how guys do it being bald in the winter...darn cold.  My hat is off to you...get it lol.  Been a long road.  I call it losing your innoscense. Think I lost my spell check!

 

Sherry

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3646
Joined: May 2012

Sherry,

I tried the "lipstick and bling" thing too, but it did not work ! My wife knew how to get it all off, fortunately.Kiss

max

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

I have close friends and relatives who havent called to ask how i am since i began chemo. It hurts, i'll be honest. I have to reevaluate often so as not to become bitter.

I don't wanna become bitter. I want to be happy and live my life and move on after my treatment is over. I think that some people's perceptions of cancer sufferers is that we are somehow different or unpleasant to be around........... Try not to let it eat at u. My heart goes out to u. Think of all the people who love u and forget the rest. Focus on getting YOU better. :-)

No hair loss so far btw. Early days. Just completed cycle 1 yaaay me

Take care Nancy

 

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Hi Amanda, 

Next Tuesday I'm having chemo # 6 and I still have most of my hair. I'm losing allot every day but I guess I still have plenty to lose before it's time to shave. I bought so many scarves to wear for when I'm bold because I tried some wigs and did not like the feeling nor the look but no need for them so far.  Last time I had my chemo treatment the nurse who worked in the oncology for over 10 years said that since she worked there, there was only once a guy who didn't lose his hair and with the ABVD treatment it's almost guaranteed to lose hair. My oncologist was also very surprised to see me with hair and said I might be one of the very few lucky once. So I hope it's your case as well. :)  

Some of my friends and coworkers didn't bother to enquire on how I'm doing either so at first I felt hurt but then I realised that maybe because they think of cancer patients as people who are dying, they just don't know what to say? Or maybe they simply don't care. If this is the case, I don't need this kind of people in my life and I'm not going to become bitter.  So I'll continue to be my happy self and hope for the best outcome after I'm done with my treatments. I'm so glad that we can all talk here about anything we want and I know I can relate to so many of you and understand the pain, the fear, ask about the unknown. You are my friends now and I'm lucky to have found you.

Natasha

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

Just want to chime in here that friends tend to not let it affect them once the shock of the diagnosis is over and you appear to come out of it alive. I have had a friend for 33 years and I am only 38, she never ever once called me or asked how I was doing while I was going through treatment and I am currently still on a 2 year maint. plan that seems like it will never end. I know that when the cancer is in our bodies we live with it everyday and I think some just have the "out of sight, out of mind" thought process. It is very hard to not become bitter or hurt, I have become a one woman wolf pack..lol...all friends and family have distanced themselves, and I frankly don't mind. I would rather be lonely than be surrounded by people with no compassion for others. It seems weird to say, but your "cancer" friends become your friends that you really feel a connection with and end up being detached from the others. It is as simple as  that saying "you never know a struggle till you walk a mile in someone else's shoes" what they don't know doesn't affect them.

 

Side note I have hair to my waist still, it just got thinner...However, I did not have ABVD.

wishing you PEACE and HEALTH

XXXOOO

Carie

 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

i totally agrre with everything ur saying.....

Im a month into ABVD but lost very little so far. Will get worse of course..... :-( sniff!

Take care of urself Carie

Chat soon xx

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

I was told id lose my hair then told my hair wld thin........ been a month and started losing a week ago; only a few grains here and there and some days nothing. worried about wt happens after cycle 2 though. Ive had 3 infusions so far. Began cycle 2 yesterday. I will only be having 3 cycles = 6 infusions in total.

then radiation baaah!

Friends of ppl diagnosed with cancer do so often hurt them! Its conforting to read wat ur going through too... its not nice at all but it makes me less upset and less alone.

Thanks for encouraging Natasha

Christine

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Haven't heard from you for a while. Hope all is well.

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Saw ur good news the other day and it was so encouraging! :-)

So pleased for u and ur family Jeff. Every single victory gives us the courage to push on.

Thanks for checking in, feels nice to know that ppl do care. Cancer can be a lonely road at times and u lose 'friends' along the way. Don't understand how ppl can chose the hardest time in ur live and make it even more painful.... boggles the mind really!

Had wat i hope to be my last infusion 6th November. Got a touch of peripheral neuropathy + neutropenic atm bleh! Ive still got a full head of hair OMG! Its thinned a bit but u can barely tell! :-D Shocked cuz tons came out.

I have a CT scan on 17th. Trying to stay calm. If all is well i will be referred to oncology for 3weeks of radiation to left neck. Scaweee! lolz

Please say a prayer for me and my family

Thx

 

SherryB
Posts: 2
Joined: Sep 2014

I am new here also but not so new with this disease.  So moan away hon....we need to.  I have never gone to support but feel the need to do it now.  I am 2 1/2 years into this journey and I am 63 but forget at times and think I am 30 lol.  I look great and feel well but the constant c scans and crap that comes with it are wearing.  So if you need to vent I understand.  You can do it!

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