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Newly Diagnosed, Will it get harder?

lmack
Posts: 21
Joined: Oct 2010

Hello -

I was recently diagnosed with Hodgkins Lymphoma, Stage 2a. Last Thursday I had my first chemo treatment (ABVD) and have been feeling good. I had a little mouth soreness for one or two days and was more tired than usual the first few days following but I'm back to normal.

With the exception of having chemo scheduled into my life, I don't feel like a person that has CANCER. Is everything going to get harder? Is this going to hit me all at once? Am i lucky or do others have this experience? I'm now getting nervous that things are going to change for the worse...

Thank you...

Newfoundcancer
Posts: 40
Joined: Jun 2010

No matter how it goes you are in good company here!

Welcome........

lmack
Posts: 21
Joined: Oct 2010

Thank you! Treatment #2 on Thursday so we'll see if things stay the same or get worse! : )

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hello Imack,

Welcome. You've found a home for a while, at least.
I don't really know about ABVD because I am on R-CHOP. How many infusions are you going to have?

I am supposed to get 6 to 8 infusions and I have had 4 so far. For me, it really has not been bad. I've not had the real sickness (nausea) that can be common. I've had a lot of neuropathy, tiredness and mouth problems. Unfortunately, it does appear that it will get worse each time. This 4th round has hit harder than the first 3 put together. BUT, I'm still not really sick, so it will be OK.

I would say that if you are not getting sick with your first cycle, you have a good chance of getting through it pretty well.
In any case, keep us updated with how you are doing. We're all on your side.

Tom (DLBCL-4-7/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Imack,
I just finished my 3rd round of R-CVP chemo, so I don't know anything about the treatment you are taking. I've been told some chemo's are harsher than others, but I don't know anything about the differences between all of the various chemo cocktails. One thing I am going to do is call and make an appointment to have a consultation visit with my doctor before my 4th round on Nov12th. I have a list of questions I would like him to address and feel like this is the only way I'll be able to spend more than a quick 15 minutes with him before he sends me back for each round. I would suggest you do the same and ask your doctor every question you asked in your post to the group. If there is one thing I am learning very fast since being diagnosed is that I have got to start beng more aggressive and assertive when it comes to whats going on with my cancer. There's just too many important questions that I shouldn't have to sit around and second guess about, and neither should you or any of us. It's scary having cancer and these doctors need to understand that some us just arn't comfortable with minimal information, but they won't get it until we "make" then get it. With that being said...you have come to a wonderful place and will get all the support you need on many many levels. Be it emotional support, medical info support, or just as a place to vent or visit, someone is almost always around to help out. I'll keep you in my thoughts and prayers and please share back with us if there is anything else you need. Call your doctor like I am going to do, and "ASK THOSE QUESTIONS". Lets make them "EARN" those big buck paychecks "WE" make possible for them to spend...(how's that for sounding assertive)hahaha!
Take care...Love, Sue (FNHL-2-3A-6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Not everyone will experience the same things during their treatments, but the road ahead will be bumpy, i am in remission now and have been battling this disease since i was diagnosed back in April of 2008 with FNHL-stage3 i am in remission now , just finished my maintenance this past Friday, I never felt like i had cancer when i was diagnosed, i know of a few people who have actually worked during their treatments, so one cant say how it will be for you, we all have and had good days and bad during treatments, i kept my sense of humor through it all, its what kept me sane, i kept a positive outlook on things that i went through,i believe a good mental attitude helps a lot, along with support with family and friends.Things for you have changed as they have changed for me, but i dont see it as changing for the worst, this has made me a stronger person,i am a lot stronger than what i gave myself credit for, sure i was scared to death, i was afraid of the not knowing, but as i got further into my treatment i learned quite a bit and i was able to handle it, i wish you the best and im sure you will do fine, focus on getting better and dont give up, you will find plenty of support from a lot of good people here on this site who have gone through or felt what you are feeling, you arent alone in this battle, we are a force of many here. Take care and good luck Chris FNHL-stage3-4/08

Helen Caruso's picture
Helen Caruso
Posts: 11
Joined: Oct 2010

i had stage 4 of hodgkins disease 13 years ago and have been in remission for that long..i was only 13 years old when i was diagnosed..so it was hard for me to go through it in my early teens..i didnt want to lose my hair or anything but i had to go through it in order to live. physically chemo will drain you. i had really strong stuff since i was in the last stage. i had very high fevers my blood counts would drop on and off...i had aches in my bones..and emotinally it is roller coster.. even 13 years later i still have anexity. you just got to be strong....good luck to ya

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Helen,
You are certainly an inspiration for all of us here. What was your exact diagnosis if you don't mind my asking? John (FNHL-1-4A-5/10)

lmack
Posts: 21
Joined: Oct 2010

Helen,
Thanks for sharing your story! So happy to hear you're doing so well.

Deb17910
Posts: 12
Joined: Oct 2010

I had HL in 1994 and was treated with ABVD also. It was bad the first week after treatment then I would feel ok the next week. Then get another treatment.(every 2 weeks) I never actually vomitted but had bad nausea and weakness. I did this for 9 months. For me the Radiation was worse....but neither was fun! Good luck to you...and hang in there! :)

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

I worked while I had my ABVD treatments in 1994 for HL. Felt like I had the flu for a few days after treatment. For me, the radiation was horrible. I ended uo in the hospital and treatment had to be delayed for 2 weeks. I know many others who breezed through radiation.
I think you are going to do fine, best of luck!!

Cathy
HD 1989 - Rads
HD 1994 - ABVD
IDC, BC 2008 - DMX

lmack
Posts: 21
Joined: Oct 2010

Thank you for sharing. I do get the treatment every two weeks. Thursday will be my second one. I'm hoping it will go as well as last time with very minimal side effects. I will continue with this for 4 months and then get a scan to see if I need it for another 2 months. How was radiation worse? Where did you have the cancer?

Thanks!

truckingalong
Posts: 444
Joined: Aug 2010

Imack,

I was diagnosed with Hodgkins on August 6th and felt like I have been thrown off the train tracks but had many many questions - how to deal with myself as a survivor - dealing with the big "C" but now with this wonderful supportive network here, it does not matter in quantities how long I may live but how well I would live and live the best I can while I have it. I still have questions but will take one thing at a time. I have done 2 rounds going for the 3rd one next Tuesday for ABVD treatment. Needless to say, the symptoms become more unpleasant for me but are tolerable so far. However, each inidividual reacts differently to treatment. At first, I did not feel too much (other than realizing having a sinus infection that was irritating for few days) then things change little. So you need to listen to your body as time goes along and feed and hydrate it well. Thinking positive always help - using family and friends and playing Solitaire and yoga and what have you. You will hear plenty from me that is for sure!! Please keep me posted how you are doing. Good luck and smooth healing,
Liz
(HL4-B 8/6/2010)

lmack
Posts: 21
Joined: Oct 2010

Hi Liz,

I didn't get to have my second chemo last week because my wbc count was too low. So they gave me shot and I had to give myself a shot for the next 3 days (neupogen) and I'm hoping I'll be good to go this Thursday. I have a bit of a head cold now, which I hope won't hold me back for this Thursday.

I was very disappointed in the set back, because once again, I feel completely normal and was ready to go, and then they told me that. I hope that is the only postponement that I'll have along the way.

Laura

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Sorry they wouldn't give you your treatment I can understand how a delay would be very frustrating to you. I don't know about treatment with the head cold, they may wait again. I was very lucky and didn't have any hiccups.

I have a cold too, well mainly just a completely irritating deep cough. Went to the doc today, got an inhaler and cough syrup so hopefully I can get the rest this body needs.

Take care of yourself and I will keep my fingers crossed for you that your counts look good so you can get another one under your belt.

Beth
LPL/MALT/Follicular stage 3 (4/7/2006)

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

You asked how radiation was worse...I had mantle radiation after having a thoracotomy for biopsy. The frozen section pathology came back thymoma, so all cancer was removed, a large tumor around my heart, growing up my vocal cord (now paralyzed) and down to my diaphragm(paralyzed too). Three days later I learned , in the doctors words, "it's only Hodgkin's Disease". They could have left the cancer in if not for the wrong dx.
The radiation burned my esphogus so that I could not swallow food or liquids not even my saliva. Back then, there were no nausea meds so I was throwing up constantly, burning the throat more. I had severe esphogitis and was in the hospital for 2 weeks. This was the only time I felt I couldn't fight anymore. Luckily, I got better to resume the treatments.

For all of you currently in treatment, you will be amazed how much beter you will feel when you are done. There is an end in sight and I wish smooth sailing for you all.

Cathy
HD 1989 - RADS
HD 1994 - ABVD
IDC, BC 2008 - DMX

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wow. What do you mean by your vocal cord being paralyzed? Are you not able to talk? And how does your diaphram effect you? I can't imagine how frustrated you must feel after going through that when I am assuming that chemo would have gotten rid of the hodgkins.

How are you doing now Cathy?

Take care,
Beth

LPL/MALT/Follicular stage 3 (4/7/2006)

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

Beth,

The nerve to my vocal cord was cut so it lays closed against my throat. When I talk, the other vocal cord can't reach it, so very little sound is heard. I had to wait a year to see if the nerve would regenerate. It didn't, so they injected the vocal cord w/teflon. That way, the good vocal cord can now reach it. I can be heard, but never in a crowd, bar, restaurant, sportin event etc. A little frustrating, but otherwise you would never pick up on it. The diapragm issue is ok, if anything ever effects the other good side, I'm in trouble! Breathing is normal as my body has compensated so far.
I'm doing ok, but am faced w/the challenges of the long term effects of treatment. These started about 4 years ago, 16 yrs after rads and 12 years post chemo. I have hypothroydism and breast cancer from the radiation (2008). I had heart problems from the radiation and chemo, mitro valve regurg etc. My resting heart rate is around 100. That is something all HD survivors have in common, an elevated heart rate. Last year, I had a TIA and within the last year, my neck and shoulders have become bothersome (radiation fibrosis syndrome).
I work full time and have 2 daughters 14 and 17, each born after a bout with Hodgkins. We live as normal a life as possible in between dr appts and surgerys. A typical soccer mom but with much less energy than the typical healthy mom.
Best to you Beth!
Cathy
HD 1989 - Rads
HD 1994- ABVD
IDC, BC 2008 - DMX

webozo's picture
webozo
Posts: 82
Joined: Feb 2010

my daughter has just completed her treatment. it did not go to badly for her. she was sick very little and the meds her doc gave her took care of that the thing that bother her most besides losing her hair and gaining weight from the riods was the tiredness she has two very young children and that was a pit of a problem. she had her days when she did not feel well but she said it was not any worst then the flue.

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