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Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Newly diagnosed Hodgkins Lymphoma

Hillcountrygirl
Posted by
Hi
A month ago I found out that I had Hodgkins Lymphoma - for a year I had been going to the Doctor explaining I was feeling unwell, I soldered on in a busy job with chronic fatigue, no social life....in fact I got to the point were I thought this is not much of a life time to slow down. Finally got a referral to the hospital, they saw the small lumps in my neck and knew immediately what it was and alarmed me with talk of chemotherapy.

I would love to hear from other people coping with the same. Family and friends are great but it is nice to talk to people going through it. I have had 2 lots of Chemo but now have low blood cells so will need to have injections to boost them.

Bit scared re what the future holds but keeping busy and positive. Please drop me a line.





jennywrenny
Posted by
Hi country girl, I too was diagnosed with NHL in July, very frightening. I had 2 doses of FC chemo and my blood count was to low for a 3rd. Had a 2nd scan and they now tell I am clear, so you see it is not always that bad. I am still waiting for a stem cell harvest on Dec 15th just in case it returns, keep you pecker up.
Love Jenny
poet40
Posted by
Hi there ....
Wasn't sure whether you were talking about Hodgkins or Non-Hodgkins Lymphoma - it sounds like the latter.
Anyway, I'm a fellow sufferer of this condition. Your initial symptoms sound very similar to my own. I completed R CHOP in February but have since suffered a lot of problems following a brief period of relief.
I guess you'll know what Stage you're at - this is a good prognostic (is that how you spell this?) indicator. I had B symptoms of rapid weight loss which added to my cancer burden so I've had a fairly rough ride with this.
Anyway, there's a great book I bought which explained much to me - if you're interested in following this up let me know. Otherwise, the booklet from Cancerbackup is superb.
On the upside NHL can be very treatable, so I'll be gunning for you.
Take Care
Andrew
Tiffany Jayne
Posted by
Hi. I have also just been diagnosed with lymphoma...last monday i was told that it is a grade one...low risk and slow growing so i am unable to have any treatment at the moment. i have to wait until it gets to the aggressive stage before i can have chemotherapy. I was initially devastated when i was told i had lymphoma but the progmosis is good so i am feeling a lot more up beat and positive. I have a 3 year old so i have to fight this for him. If you need to chat my e mail address is tiffytoffeeapple@hotmail.com
louloubellex2
Posted by
hi hun i was diagnosed wif hodgkins in feb this yr , had 6 courses of chemo n had 2 inject myself 2 4 bout 4 months , i ended up gettin my mum 2 do it cos i just cudnt in the end i even emptied 1 down the drain. im now in remission n my first appointment is jan 13th hopefully a lucky day 4 me lol my family n friends where brill plus ive got 3 girls, but hey life goes on n im still here n u will b 2 u just need 2 listen 2 ur body n respond ie if u feel tired go 2 sleep if u wanna run a marathon do it, plus keep doin ur injections or get sum1 else 2 do it for u .hey it cud b worst u coud b in hospital all the time ur doin chemo. my names louise n im 37 wif 3 girls 1 is 15 then 11 then 4 n believe it or not the 15yr old is more harder work than the 4 yr old lol speak 2 u soon tc

lou x
Hillcountrygirl
Posted by
Hi thanks for emailing me - I really appreciate you all taking the time to make contact with me. This is my second go at responding having pushed the wrong button and deleted my first entry !!

Had Chemo no. 3 (thankfully as my white blood cells had increased ) now have a cell booster injections in between - all seems okay thus far. Keeping busy writing Xmas Cards and doing my Xmas shopping via the internet (to steer clear of people with colds and flu). Had a few days of feeling pretty exhausted and now have a few days of much more energy. I think I must learn to take each day as it comes rather than what I planned to do. I feel the cold alot or maybe it is just cold !! Living in thermals !

My hair has thinned but still have a passable amount (though with the cold weather I have taken to wearing hats to keep warm and quite enjoy it), that said I am preparing myself to loose alot more so that anything else is a bonus. The dexderity (spelling ?) in my hands is not as good (I think this is something due to the chemo) but I can do buttons etc - it is strange how you adapt and don't even notice things after a while - lost slight sensation in my finger tips.

Everyone seems to be having scans at different points of their Chemo treatment, I would like to hear when you had yours and how it was for you.

I am learning to appreciate that there are so many different types of cancers, treatments and how they affect people depending on their physical and mental outlook. While it is good to be informed, much of it may not relate to you.

Please keep in touch and keep positive.



louloubellex2
Posted by
hi hun i had a scan bout 4 months in2 my treatment n it showed that mine was shrinkin which was gud ,i also felt very tired afta my chemo i wud stay in bed 4 bout 3/4 days i was supposed 2 have 8 courses but didnt need them only had 6 but i was havin problems wif my breathin which im hopin is down 2 the chemo got an appointment 2day 2 find out if anything is wrong so my fingers r crossed n so r my toes lol. i also get numb n white fingers which i cant explain cos im not havin chemo anymore so its strange ah well thats a small price 2 pay 4 life. my name is louise wots urs? my hair was thinnin but i got my sis 2 shave it n yes it is cold but its down 2 ur immune system cos i was always cold still am now walk round the house in a hat n i also sleep wif 1 on got 2 go now u take care x
Hillcountrygirl
Posted by
Hi Louloubelle
I hope that your appointment went okay for you today ?
I have been told that the numbness in the fingers is caused by one of the Chemo chemicals and it could take a number of months after treatment to disappear. I am now doing my white blood cell injections myself (easy !) woke up last night with bone ache's (like bad period pain) I think the white blood cells are kicking in !

Take Care of your self.
starfish
Posted by
Hi there,

Sounds like you're doing really well, keep going!My sister was diagnosed with HL a few months ago,she is half way through treatment. She doesn't receive booster jags for her white blood count, they just keep going with it even though her count is very very low. She is doing really well. I could pass on your email to her if you wanted to chat with her?
Susie xxx
Hillcountrygirl
Posted by
Hi Susie
Thanks for your email. Yes I would love to hear from some one else going through the same thing. Right now I am trying really hard not to dwell too much of the Cancer but think about things I will be doing next summer. I would love to be in email contact with your sister, like her I try to protect myself from what I read on this site and others as some times you come across things you just don't want to read.

Hope your sister is doing okay and look forward to having contact.
TereseHL
Posted by
Hi there,
Just about two weeks ago I had my diagnosis of Hodgkins Lymphoma, I'd had my symptoms for two months when the doctors discovered what was wrong with me and suddenly my whole life turned upside down like a pancake.... How old are you, Hillcountrygirl?

Hugs and luck