Hi Guys,
Can something please tell me about all the different "rounds" of chemo, and do they all feel differently?
I thought it was no big deal (my very 1st round Fri)....wrong!---last night, I had so many symptoms I couldn't keep up with them. I had a weird "thickness" in my throat/neck where my very 1st sypmtoms once were. Then it seemed to upset my stomach some--followed by the "infamous" feeling of metal in my mouth. I'm taking Kytril (2nd day) for nausea/vomiting...and thank goodness I haven't been there, (vomiting) as of yet. My shoulder pain has gotten worse. I think I was thinking I was going to eek by :eek: BUT NO NO :nono: ---not me. The ole' ABVD is playing havoc with my system. My husband said, it's going to have SOME side effects, for heaven's sake...since they're zapping the crap out of those bad cancer cells...and to just take med's to handle it, plus WHERE DID MY POSITIVE OUTLOOK GO? Did it get up in the middle of the night and take my car to go to the mall??? Well...I hope it comes back soon...I could sure use a nice, long talk with it.
I thought I was armed---now, I'm not so sure.
In your experiences with chemo, is the lst one the worst---are they all the same?----Any input I'd appreciate. Thank goodness for med's. I would NOT have slept at all. Some of your very 1st posts here, with other people helped some. I guess I'm still learning.....very slowly.
I already feel 'some' better....
:)

Poo - just did a post and lost it - TWICE

General idea - chemo isn't nice but what makes you bad makes you better. Your PMA is prbably taking a little shopping trip at said MAll but I'm sure it will be back after a little retail therapy.

I prob did have side effects but denial works well for me. I concentrated on having a laugh and insisted to the world that I was OK and think I actually willed myself to feel better!! That's just the way I deal with things. I did get a little more tired with each session - but my sense of humour became even more warped and twisted to deal with it.

Give yourself a few days and you will be feeling up again as the drugs start to leave your system. In the interim, chill out and watch DVDs etc

Take Care

Ails xx

Hi Ladies,

Singer, I am so sorry that you are having to deal with all these new and horrible sensations that are happening to you, it's the not knowing what to expect that I find really hard to come to terms with.

I'm sure your body will soon adapt and hopefully you'll feel better.

Hows your migraine today Ails? I hope that you are feeling much better in your self.

I think you've both got a great sense of humor, and are lovely ladies, who have been a great help to me, and I am glad that we have had the opportunity to have come across each other.

( that sounds a bit sloppy)

xx

Aww, not sloppy, sweet

Anyway, Lady, what is your course of action for this week? I assume you have already made an appointment with your GP and have a relevant lists of symptoms, questions and requests (otherwise known as demands). It doesn't matter if they think it's something else - you know your body. So what if it's very unlikely that it is lymphoma (not as common as you think) MAKE them do the tests to rule it out. If you get nowhere request an appointment with the practice manager and mention the GMC if you need to

I hate being bossy but I need to be. I know what it's like trying to get someone to take you seriously. I faffed about for 3 - THREE- years getting told there was nothing wrong with me - if I knew then what I know know I would have been a darned site more assertive

Take care and let me know how the appointment (which I know you have already made ;) ) goes
Ails xx

Ails xx

Hi Ladies,
I'm feeling some better---spent the morning on the patio, talking with my visiting son. He's a very soft-spoken, kind person & seems to help me put things into perspective. I'm blessed in that respect.
I just can't believe all the weird sensations from chemo. It never really seems to last very long---it kind of jumps from one thing to another. The shoulder pain has been, and is 'still' a major problem for me. My oncologist said it was from the incision (node removal) and maybe a bit of arthritis.
At this point, I just want to lie around .... I can tell my taste buds are changing. I thought I'd be an "exception" ----LOL! I don't think there are any. As in positivity...I'm working on it.
Fairy---I do hope you get some results SOON. This has been going on way too long for you. My plight has been so quick---I can't think straight---but, having read your posts, I realize I'm much better off knowing what I know. This could've lurking for weeks/months and my lymphoma getting worse--- I still think my husband and I had mono (Epstein Barr virus) about 3 years ago, and that started my whole escapade...
Thanks for any input. I know it has to be "bad" before it's "good"...I just wasn't aware of all the strange sensations involved. Whew.
XO S.
p.s. YES ---ASSERTIVE is the key word, Ails.

Ails you know don't you? :confused:

I haven't made an appointment :eek: only because I feel so bad, i don't have the energy to go over everything, my doctor has been really good, he knows how ill I am.

I just don't know where I can go from here, he's stuck for ideas, and I come away thinking what a wasted journey

i have a list a diary, of my symptoms, it gets looked at, and still no ideas:confused:

I have been told by two consultants that they think it's lymphoma, but now no one knows what's happening to me.

I know only I can do something about it, ..... Sometimes i think if I don't do anything about it, it will go away.

Go on tell me off :nono:

The time for being nice about this has passed. You tell your doctor that if he is out of his depth then he needs to find someone who know what they're doing. 2 consultants who think that you have lymphoma and are doing nothing but standing around scratching their arses? :mad: :mad: :mad:

If it is lymphoma and you do nothing about it it will not go away - it will get worse. The only way to make this thing go away (and this is way possible) is to get treatment

I think your consultants need to get a grip and start doing their damned job. If they don't want a mal-practice suit that is

Sorry if I sound harsh but I cannot stress enough that you need to get this sorted and you need to get it sorted NOW

I can't force you to take strong action on this, Susie, but don't make me beg - it's not a pretty sight :p

Ails xx

Fairy,
Can't your husband help you out and go with you to the doc's?
If I hadn't had my husband with me throughout some of these tests--not all of them---but, the scary one's that zapped my strength, I wouldn't have survived like I have, to this point. Aren't you going to listen to Ails, and follow-up with some of her suggestions? You know it's only going to get worse. It's like this chemo-thing---Apparently, I have to feel BAD before I get BETTER. So be it. I have to do it....I couldn't live like I was. I was only operating on a "5" on a scale of 1- 10. I had my moments....but, I remember my husband telling me I was "no fun" anymore. He knew something was wrong, before I did.
You have to press through.... Heaven knows the last thing I wanted to do was go through test after test after test... And I believe there's still so much work to do---but, I want to live a happy carefree life, that we all deserve someday...and if it's 6 months of Hell to get there---so be it.
Remember the "light at the end of the tunnel"---I lost vision last night, but I'm back on track. You ladies help so much.
I didn't know one's body was capable of so many odd symptoms---
These are all new feelings --- new experiences---but, I'm certainly not the only person that's ever felt them...plus, this is curable! I'm rambling---I start putting my foot in my mouth when I ramble.... sorry. I'm feeling out-of-sorts...must be chemo-brain. :dizzy:
Happy Sunday.
:)

Hi Singer

Chemo brain - LOL I do remember that!!! I'm still a bit "thick" and dippy on occasion and my memory is not what it once was. It's just part of my charm now!!!

Ails xx

Hi Ails---
Yeah, NOW I've got an "excuse" !!!!

:D :D :D :D :D :D :D

That was my take on in too!!!!!!!!!!

LOL - it's either a case of "great minds think alike" or "fools seldom differ"

You sound a lot more chipper. Give it another day or so and you'll be on the up again.

Ails xx

hey, im also getting ABVD. my side effects are different after every treatment! my doc said that lots of people get days when they feel nausous etc and they know when ie nausia on day 4 and 12 sort of thing but not me. i usually get a million different random side effetcs in the first week after treatment and then the second week i feel totally fine. thankfully i've only got another 2 cycles cause the side effects are definalty getting slightly worse. i guess everyones body reacts differently. i know that when i'm done i'm treating mine to a long overdue frozen daquari!!!
hope you are feeling better soon
xxx

Hey Pinkmada, Ails & Fairy---
Your posts are the one's I read last night, in the wee hours of the morning, thinking I was completely nuts! They helped calm me down---sometimes it can just be 'one' thing somebody says---and I think "OK...I, too, can do this..."
I was told there is a "pattern," also during chemo--but, not everyone follows it. I just wish I didn't have shoulder pain like I do. I think it's the chemo AND the pain med's doing a number on me....anxiety, too.
I just had my FIRST one Friday---and here I am whining like a big ole' baby. I have 7 more to go...and one month radiation. There goes my summer vacation!
Yeah...a frozen margarita, complete with chips & salsa---sounds good.
Pinkmada, what stage are you? (This question for Ails, too)>>Did you notice a reduction in your glands/lymphs during chemo? I read some posts where people SWORE they got smaller after only one chemo session. I think mine are putting up a fight.
Anyway---nice to hear from all of you. I needed you all today. I'm a little "rough around the edges." Please excuse my "down" day. :(
:)

I noticed a significant change after session 3 (I had 12 altogether) and they were practically gone at the halfway stage

Ails xx

Pinkmada,
Do you have to take anti-nausea drugs?
I've been taking Kytril. One in the morning/one at night for 3 days.
So far, I haven't gotten queasy, but all the other symptoms are not fun at all!
I feel a "war" going on inside me! :blob_fire
S.

Ails, You had 12 enlarged lymph glands?
Wow... I had 2 collarbone (one out, & biopsied) and two one cm. sized one's in my chest. Although...the little buggers keep popping up, all over my neck & then going down. That's what I meant in my last post.
THIS IS WAR !!!!!!!!!! :mad: !!!!!!!!!!

p.s. I reread what I wrote---I STILL have 3 out of 4
They spotted the 2 in my chest through my PET scan. God bless technology.

Sorry - no, I had 12 chemo sessions. Can't remember how many nodes I had - maybe half a dozen with 2 especially large ones

Ails...I misunderstood your post, concerning "12."
I have 8 chemo sessions, one month "off" (I hope) and one month radiation.
I just got off the phone with my sister, who told me to look up "glyco nutrients" ---some sort of supplement that is kicking cancer's a**. I haven't as of yet...but, does anyone know anything about it??? Apparently, you can take it along with chemo. She said she saw a very convincing documentary on it. I'll have to ask my doctor, after I do some research. I'm trying to be a "good patient" and "follow doctor's orders."
:)

I did some quick research about *************s---it's experimental...I'm not convinced.

Thanks ladies.

I am going out on a mission:o I feel a bit embarrassed, I really do want the help, believe me, but i have had such a hard time, I think why should I care if they don't.:( Stupid I know.

Come with me Ails, I could do with someone with your spunk!!

My dad has offered but he would rip their heads off, and that's not quite what I want :blob_fire My husband comes, and I have felt let down on many occasions, as I keep saying stick up for me, tell them what I'm like that I too ill to wash my hair at times, I ask him to cut up my food at times, just because I don't have enough energy.

I will get help, I will survive:rolleyes: (ok too much?)

I need you ladies to keep at me, other wise I will just think it's nothing :eek:

love you both :wave: Susie x

Hey Pinkmada, Ails & Fairy---
Your posts are the one's I read last night, in the wee hours of the morning, thinking I was completely nuts! They helped calm me down---sometimes it can just be 'one' thing somebody says---and I think "OK...I, too, can do this..."
I was told there is a "pattern," also during chemo--but, not everyone follows it. I just wish I didn't have shoulder pain like I do. I think it's the chemo AND the pain med's doing a number on me....anxiety, too.
I just had my FIRST one Friday---and here I am whining like a big ole' baby. I have 7 more to go...and one month radiation. There goes my summer vacation!
Yeah...a frozen margarita, complete with chips & salsa---sounds good.
Pinkmada, what stage are you? (This question for Ails, too)>>Did you notice a reduction in your glands/lymphs during chemo? I read some posts where people SWORE they got smaller after only one chemo session. I think mine are putting up a fight.
Anyway---nice to hear from all of you. I needed you all today. I'm a little "rough around the edges." Please excuse my "down" day. :(
:)

hey, you can do this! Can i ask what age you are and if you are working or studying? you're allowed to whine! believe me!!!

i'm at stage 3. my story is really *****ed up. I had no swollen glands or nodes but i was in a severe amount of pain and no-one took me seriously. eventually i had a biopsy done and was told i have hodgkins. i was taking really strong pain meds every three hours on the dot because the pain was so bad and i could feel the meds wearing off and during my first treatment was the last time i took painkillers. it was only afterwards that i'd realised that i'd missed taking them and i've never needed them since. When speaking to my oncologist about she said that the slightest decrease in size would make a huge difference to the pain and the pressure on my spleen. can i ask what stage you are at? I think i read that your stage 2?
xxx

Mada,
I'm sorry....I posted the earlier post, without reading this one...
I'm in my "early" 50's...I know...I don't even like typing it----everyone says I look younger (maybe not right now). I can't believe I've gotten what they term a "young person's" disease. I saw a scale, where they said "50's" were at the very bottom, to get this disease. Yeah, right... I'm a professional singer (taking time off) and have always had throat problems...even when very young with my lymph glands. My doctor said this was probably coming for 2 or 3 years. I'm thinking that a virus that my husband and I had, pushed me "over the edge" into Hodgkin's. I had 2 nodes (collarbone), and they took one out---after a PET scan, found 2 more (very small) in my chest area... That's why I'm "2A"--- My ENT originally thought I'd just have to have radiation for 6 weeks, UNTIL they found the other nodes. Thank goodness they did---I want them to be completely thorough--but, I had NO idea what this all entailed. I miss my life....my family.....my husband is having a hard time dealing with this, too... I know there's people so much worse off---I read about it---nothing's easy, I suppose.
You sound very upbeat about everything. You and Ails (and Susie) have been wonderful for me to "talk" to.
Thanks---continued success to you! :)