Recently diagnosed

Hi all! Ive only just found this group and I have spent the last hour reading your messages! I'm 34 and was diagnosed with HL on january12th. After a ct,biopsy and PET scan I'm stage 2 and started my ABVD on Friday 13th March. I'm facing 4-6 cycles of chemo before another PET scan to determine the next step.

It seems so weird to read your convo and hear about other people going through all the same stuff I've had to deal with! So glad you're all positive about getting through the treatment and getting on with life! 

Ive got two daughters (aged2 and 5) and a brilliantly supportive husband to get well for! 

Got my next treatment this Friday! Can't wait to get it over and my first full cycle to be complete! Ive had a PICCline put in for my chemo and the dressing holding it in place itches like mad so I can't wait until chemo is over and I can take a bath with my arm under the water! 

Wondered if any of you could answer a Question? Since my first chemo, the large lump in my neck has shrunk from the size of a golf ball to the size of a marble. Can I take reassurance in this that the ABVD is doing what it's supposed to do and should continue? I haven't seen any of my team at the hospital since my last chemo to be able to ask? 

Hooe youare are all feeling well today. thanks

Sarah

tscantle-

basically yeh; I've a male (same sex) fiance, and a female partner too; to me each is equal, I love both, so much; though due to my female partner living in Sweden, I don't get to see her as much. New age? maybe... I'm kinda like a hippy really; just born in the wrong era! - mind, I've been differnt things... at differnt times; almost ha a serious bash at being a full time drug addict, about a decade ago, along with near alcoholism, but... luckily escaped that slippery slope... - heck, and now I've quit smoking?!- like a differnt person... (no drugs (cept chemo), and barely drink anymore!

as to the being blind... well.. that was my road traffic accident when I was 17, ; had a brain haemrodge then, too, plus spent a few months in a coma; and people wonder why a little thing  like lymphoma..... doesn't scare me.... too much! - but... well, I am kinda used to the being blind thing... I guess; though getting worried about this perlipheral neuropathy; I can't lose my sense of touch; and in all seriousness; if that looks like an option; I'm dropping out of chemo. ; touch and sound, having lost my sight, are my main senses with the world; I've slim enough a grasp on reality at the best of times; if I were to suffer perminant neuropathy, and lose my sense of touch... no thanks- I'll risk it without the chemo. but.... ATM: its full blast with the chemo as far as I'm  concerned... ; pity they can't up it to once a week, just get it done with quicker!

Sarah; My lymphoma, under my armpit (what I presented to GP with); vanished as you describe, after my first chemo infusion; after the 2nd; it'd gone down more; when I saw my consultant before the 3rd infusion, he said he could not feel anything anymore; and on the basis of that has put me in, early, for a PET scan, to reevaluate how much more chemo I need!; it certainly indicates the ABVD drugs are working; lymphomas, from what I've read, certainly the hodgkins variety/flavour; useually rspond well to chemo, like this.

The duck eggs were good; I tried to be good, but slightly undercooked one, so got some loverly runny yolk.... - I'll not tell my consultant my mistake if you won't...

came over... very tired a while back, tried to sleep... no chance... so drinking a litre of fresh fruit juice (about the only healthy thing in my diet TBH), and pottering on the net, until I can make myself get up, out of bed, leave my teddy's behind, and actually do something useful....

really really want to pick my guitar up... but I'm so scared...; my fingers, with the perlipheral neuropathy, so reduced strength, and feeling in them; plus so many cuts, bruises and  burns, where I've accidentially hurt them, due to having loss of sensativity...

hope everyone else is having a more fruitful, useful day than I am! really... so little achieved... gradually driving me mad.... being so hopeless at getting stuff done...

mark/2legs 

Sarah, often lymphoma reacts quickly when hit with chemo and shrinks or melts away, it sounds like that is what you have experienced and that is a positive sign that the chemo is kicking the lymphoma into touch.

Is your arm red and warm around where the dressing is itching? if so you may need to check to see if you are allergic to the dressing, it happens sometimes especially the small cheap ones, I experienced it after surgery to get the biopsy. 

enjoy the group you will get lots of support.

john

Hi Sarah, Welcome to the forum none of us want to be members of and more especially this mega-thread.  Having read the thread you will be aware that there are several of us at various but close stages of treatment which is helpful as we can advise each other.  The first session of chemo often has a very dramatic effect on the cancer and many people notice significant reduction in the size of nodes, so I think it's safe to assume it's working but clearly only time will tell.  As I didn't have any outward signs i.e. all my enlarged nodes were in my chest/lungs all I had to go on initially was my white blood cells being nuked, the assumption being that the chemo drugs don't know the difference between a good cell and a bad cell so if it's killing my good white cells it must also be killing the bad cancer cells.  You will find that there will be some really bad times but don't be afraid to talk to your support team - that's what they're there for or if you feel you would prefer, talk to us as it is often easier to talk to a stranger than a friend or member of the family especially as we are all in the same boat so understand what you are going through.  Looks like there will be 3 of us in the chemo suite this Friday so keep your chin up there is life after HL.  Phil xx

Thanks guys for the quick responses! Good to actually speak to people in the same situation! 

My PICC line dressing itches because it seems to wrinkle over my skin so holds my skin too tight! I only get the dressing changed once a week by my district nurse but I guess a little discomfort is better than the hassle of having injections and lines put in everytime for bloods or chemo. Ive never been good with needles so at least it makes things a bit more simple! 

One other question!? Has anyone else lost their voice? Mine went whilst getting the 'v' but if my 'ABVD'. My nurse stopped the chemo, gave me some more steroids then when I felt better she restarted it with saline. My voice came back that afternoon, but since then, it's gone again and even though I'm feeling great now, my voice still isn't back? I Can't sing either much to my two year olds dismay on missing our goodnight song! 

Hi Sarah :) welcome.

I had exactly the same! Check out my blog here of my lumps going down : http://havinghodgkins.blogspot.co.uk/2015/02/abvd-38.html

I've taken it as a sign of the ABVD kicking it's ass as John puts it :)

I haven't actually done a PICC line though! It kind of hurts me and is prickly in my veins now at half way through but I'm so bloody absent minded in general I'm likely to hurt myself bad if I did do a PICC in so best I just keep veining myself I think!!

I haven't lost my voice, no, but I've had a bit of difficulty swallowing in and out... don't do too bad on the vinblastin, it's the dacarbazine (big bag) I still feel a bit queasy thinking about lol

Hope you're doing well all else considered? 

Tom

Hi Sarah,

Welcome, I also have PICC and find it a bit itchy. I agree with you I think it's the tightness of it, mine has been in for three weeks now with no sign of infection. I get it changed after chemo once a fortnight and my husband does the other change and flush (saves waiting for the district nurse). 

Oh no little ones and singing the bedtime song, it's a biggie, mine used to love a song on the way upstairs, record yourself when your voice comes back so you can play in an emergency. How are you coping with treatment and looking after your little pickles? Do you have some support in the first couple of days after chemo? My boys are 13 and 15 so don't need as much physically but can be a little emotionally draining.

This thread is fab for emotional support and laughs along the way, we all seem to go through similar ups and downs and it's great to talk to people who really get it. 

Great that you can already feel that your lump is going down, the small lump I had on my neck is gone, hoping the same is occurring in my chest.

Hope all goes well on Friday

love Jakki

Wow! Thanks all! Good to finally connect with others in the same boat! 

I first noticed a lump just above my collarbone in early December. Thankfully my GP referred me to ENT for a biopsy to investigate. Since then it's been a non-stop roller coaster! I'm stage 2 with a large mass in my neck, another in my chest and a third starting on the other side of my neck.

i'd not heard of lymphoma before but during my diagnosis, everyone I spoke to said that out of everything it could be, Hodgkin's lymphoma was the best as its so responsive to treatment! Im pretty sure they would tone down their response if it was them looking at 6 months worth of ABVD! 

Im very lucky to have such a good support network! Me and my husband run a pub for a large chain, and work have pretty much given me 6 month off on paid leave to get my treatment done! Ive got a twin sister who takes care of my two girls for day 1-5 after chemo until I can face getting out of bed! Hubby is a bit queasy with icky stuff so I'll leave flushing and dressing changes to the district nurse, not like I'm going far for the next six months!!!

my first chemo knocked me off my feet, but after two months on 8 a day 30mg co-codamol, I think it was the withdrawal from those that caused me the problems. I haven't needed any pain relief since the two paracetamol my nurse gave me the morning of my 1st chemo! 

Its been nice nice feeling like a normal human again for the last few days. It's been ages, probably back in December before I noticed the lump! I hope my chemo continues to be a bad week followed by a good week because it gives you something to aim for! 

As for my voice, the nurses didn't seem too bothered! I just hope it comes back soon, maybe it is the nodes in my chest causing the issue! Hopefully my consultant will have something to say on the matter when I see her Friday! And to be fair to my little one, she sings the bedtime song to me now (you are my sunshine) and I just join in the bits I can! She's getting quite cheeky with the "I can't hear you Mumma!" Every time I ask her to do Something! She's pretty quick for a two year old. My 5yo wears hearing aids as she was born very prem, so she is brilliant at lip reading! She manages to pick up everything I say to her!

Omg! Feels so good to get it all down on paper! Clear my thoughts out of my head! 

Better call all it a night as I finally feel sleepy! It's taken a week! Who knew how amazing my kids Piriton was for sending you off to a non-restful 8hours sleep! Better than clock watching the whole night long!

Thanks again folks for the answers and insights! Nice to know I'm not on this path alone! 

so, anyone asides me go for having a port a cath  (not sure how its spelt) fitted?; its in my chest, under the skin; so needs no care between uses, really; not open to infection etc... ; guess it'll leave a small scar... but, - I've got something of a collection of scars going already, in various places... so one more... is just another notch on the victory post of past events in my .... slightly odd world-view....

Does everyone seem to get  knocked down, relaly far, immediately after an actual chemo day/infusion?; only, oddly, I don't tend too; after chemo a litle tired, as its useually a long day, but, then just get bus home, etc, as per normal I guess...; I do feel tireder I think, first week after the infusion moreso than the second, but it tends to just vary day to day anyhow, irrelivent of wen the chemo last was...

today... was so low energy.

turned out, a decent meal (salad, pork pie, scotch egg, cheeses, bread, etc), folowed by another over-excessive bath; with a  rediculus amount of 'product' from lush (bath bomb, plus bath melt, plus moisturising soap, plus coconut shampoo, and coconut conditioner), seems to have woken me up; just at the time of the day I'd prefer to be thinking about bed...

trying to turn relaxed, zen like state, into sleepy one, but hopes arn't high... ; fruit juice and jasmine tea this evening...

day in town, get some shopping done tomorrow, and then fairly early start, Thursday, for infusion/chemo; bloods a bit before 11, and chemo then doesn't normally  get going until some time after 2, onc eI've seen consultant; going to have to explain to him, that this perlipheral neuropathy needs to be, well, delt with; just realised tonight, how poor my hands are; they're rubbish now at picking up pain, heat, etc, and suffering from this; luckily i  stuck a leg in the bath tonight, gingerly, before just plunging in; it was boiling!; yet luke warm to my hand... and... my sense of touch is essential to my life, given I'm blind... that and hearing, is my experience of the world around me, basically... - noticed rahter large cut on my finger... maybe split in skin, from drying, or an actual cut, from cooking or something, I'd not noticed... hope its got no infections in it...  seems partially heeled, so no idea how long its been there...

I think I've noticed a bit of differnce in my voice; but hard to tell; could just be from quitting smoking mind, I guess!

non-smoking.... hardly drinking a drop of booze... err, non-prescribed drugs decades in my past.... - gosh, never guess things would end up quite this ... 'clean living'.... - I think I shocked one of the chemo nurses, last time; I was explaining to her, my theory, that the chemo drugs, during infusion don't cause me nausea, or any actual side-affects during infusion; because of my previous 'life' of vast non-prescribed drugs... I was actually being serious... I'm not entirely sure she thought I was... - kinda glad all those days are behind me now; I could  have reacted quite differntly to diagnosis, ten years earlier; and just ignored it, and gone off on one  big, final bender... actually, just going off the rails like that would have been a certanty, that long ago, and a near certainty, even now, were it not, for those in my life, who, afterall, made me go see the GP in the first place... left to my own devices; I'd still be noticing this lump under my arm pit; and thinking 'it'll just go eventually'.....  so lucky...

hoping everyones chemo this w week goes well, there seem several of us, almost at the same stage of t treatment...

Mark/2legs