Hodgkin's Lymphoma diagnosis (im new here!)

amanda_christy

NANCYL1 said:

AMANDA

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

 

 

 

 

It can be a lonely journey

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

 

SherryB

New here also

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!

SherryB

Max Former Hodgkins Stage 3 said:

Hair

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

Yes had chop r too

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

Lifeisbeautiful

amanda_christy said:

It can be a lonely journey

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

 

Be happy!

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

Jeff148

amanda_christy said:

Ok but brain is broken lolz

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

 

Double thumbs up!!

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

girliefighter

Lifeisbeautiful said:

Be happy!

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

Friends

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

Lifeisbeautiful said:

Be happy!

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

On ABVD.....

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

amanda_christy

Jeff148 said:

Double thumbs up!!

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

Yaaay again

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

amanda_christy

girliefighter said:

Friends

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

 

i totally agrre with

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

Max Former Hodgkins Stage 3

SherryB said:

Yes had chop r too

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

Bald

Sherry,

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

max

Jeff148

amanda_christy said:

Yaaay again

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

Keep it up!!

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!!

Jeff148

amanda_christy said:

On ABVD.....

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

How is everything going?

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

amanda_christy

Jeff148 said:

How is everything going?

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

my brain was on hiatus :-D

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