This is all new to me, and I don't know what to think! Help.

aisha1

Hi,

I'm going to have a look at all of your stories to get an idea of how these things develop and a range of prognosis and direction.

I went to see the haematologist today and he said that he can't really say much until the biopsy reults are in from the pathologist. He also said that there is a chance that the sample was not good enough, or was crushed in the needle etc... so he has said that we need to wait and see. He warned me of the chance that they may need to get into my chest surgically, and that would be awkward for them, so he's hoping that the sample was good.

I just have to wait and see now. Has anyone had a rash on their hands? It is very localised, just on the palms, and that's it. Wondering what this is?

Anyway, I'll let you know what happens, as soon as I know myself. I'm going to read the stories now. Thanks.

aisha1

Hi,

I've had an open biopsy. Instead of them going in to my chest, they have chosen to take some nodes from my neck, as they were maturing and would give a good sample. It was a lot safer than them cutting through my breast bone! They found me an emergency slot on Wednesday and the operation went well. I just have one slice on a crease on my neck. It is stitched and covered, but is still a bit scary to cough, laugh, sneeze etc! Laughing

I am just waiting for the results now of my biopsy. I am told that it will take a week. Hope this one returns with some conclusions.

This part is so annoying! I just want them to start my treatment!

I'm making sure I write all of this, because when I had sympyoms at first, and googled them, nothing was coming up. I'm hoping now that if someone ends up googling some words, this may come up.

The doctors at the hospital don't really know what they are doing. There are a lot of Junior doctors around because everyone has just graduated! You have to tell them to go read your notes, before they come to ask you 101 questions and try and figure you out! Shocked

Thanks for all help and support. Kids are driving me mad though and won't let me rest! Does anyone want to buy an 8 year old girl and 4 year old boy? I'll give you a good deal. Laughing

Aisha.

ChemoMan

Hi aisha

Hang in there kid, you can do this. Its tough where you are at the moment soon your path will be clear and before you know it this will all be a distant memory.

lets us know your diagnosis and I am sure all of us here in this forum will lend a hand. My thoughts are with you in this difficult time .

Take heart , you can overcome
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Thanks for your help. I think you could probably tell that this part is the worst for me. Embarassed

I can take bad news, but being in limbo is just rubbish!

Anwyay...... I was talking to a friend yesterday and she was telling me that her sister had Hodgkins, when she was 19. She has now been clear for 11 years!!!! She was telling me about these drinks that I cna drink and she has told me to go out and buy a juicer. She said that I should put everything green (cucumber, broccoli, apples, celery etc) into the blender. She said if I sip it then it will help my immune system. She said that her sister did this, and still does it and it helps her a lot when her immune system is down.

Thanks for your private message by the way - that was so nice.

Aisha.

ChemoMan

Hi aisha 1

The juice sounds like a good idea. My assumption was that you have HL but please be aware that is a guess. If you do you will very likely be around for many decades to come, as medical science is very good at treatng it with success and has been doing so for a long time. Which brings me back to the juice. I would start now because if you start chemo your taste will change and you may not be able to drink it. Once the chemo finishes your taste will quickly get back to normal. Vegetable juice is a good idea for anybody at any time so go for it.

That limbo period is nasty, most of us have gone through it, once you have a firm diagnosis you will have a goal and a clear fight in front of you and it will settle you somewhat.

Below is the reason this is a good fight and one that you will win

http://www.youtube.com/watch?v=JQuksPhbUMc

Cheers Very Happy

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Wow! That is so strange!

My mum died of cancer when I was 14. When she died she had struggled a lot and had cancer 3 times in a period of 7 years. When she eventually died she was in a private room in the hospital. When my sister (who was 11 at the time) and I went in to see her, she was very tired. This song was playing but Louis Armstrong was singing it. She just about had anough energy to know what was going on, and she sang it a little bit.

A few minutes later she fell asleep, so we watched television in her room, and we tried to wake her up before we went but she was in a really deep sleep. We kissed her and left. We didn't know that she was never going to wake up again, and the next morning my Aunt came to my house, and said that my mum had passed away at 12:04.

I always remember that song and I remember the smell of the hospital, the position of the bed, where my dad was standing what he was holdiing, and I remember thinking that my Mum would never actually die because she kept on singing and talking - even though the doctors had told the priest to give her the 'last rights' on 4 different occasions! She reffused to leave, and I always thought the doctors had it wrong, and that she wasn't as sick as they were making out.

Anyway - I think that was a lovely song that you sent and I am grateful. Thanks for all your support and I will know by Wednesday what is going on with me for sure. I've never been looking forward to bad news so much before! Laughing

I just want to know what I am dealing with!!

Cheers!

ChemoMan

Hi aisha 1

I understand what you are saying about the bad news. If you have any questions write them down before you go in, so that you don't forget them on the day. If by chance you have HL/NHL don't forget to ask what stage you are at. It won't be long now and you will know what you are facing and you can fight the good fight.

Good luck you and your family are very much in my thoughts.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Hi Chemoman,

I phoned today and they said that they have no results back yet. I have an appointment with the haematologist on Wednesday at 12:30. Hopefully I should draw some conclusions from that meeting, and my results will be back.

Last time I saw him, he said that I was stage 2a. I guess the a is because I don't have b symptoms like night sweats or rapid weight loss. They know what it is - they've even spoken to me about when I start chemo, so they are pretty sure what it is, they just need the biopsy to return a conclusion as to whether it is HL or NHL and which type of those sectors it is.

To tell you the truth, I think it is also in my bones as well. I've had pain in my bones (started even before I found the lump in my neck). I noticed the pain about the same time I started to have the nose bleeds, but thought nothing of it. I am still getting it. Both shins, both forearms, and my jaw bone. Yesterday I had it in my right shin and left arm from my shoulder to my elbow.

My blood type is not very popular either. I am O rhesus negative. I have to have injections of something called Anti-D when I am pregnant, and I have lost a child due to not knowing what blood type I was when I first fell pregnant. I am not sure whether that has had something to do with my lymphoma. I have a high platlet count and that is normal for me. When I have a cut, it heals very quickly and even my operation I had last Wed (5 days ago) has nearly healed totally, and I only have a scar now Cool

Anyway, I'll let you know what happens. I'm so glad I found this forum. I have read Don's story and a lot of his posts. Single dad's story, Badri's story, another guy who has numbers in his name a lot and a few other people. They have taught me a lot about this cancer and how it has affected many people. It has also made me realise that there are many questions that I should ask the doctor; for example, they have taken LOADS of blood from me in the past 4 weeks, and I only asked last week about LDH levels in my blood because I read it somewhere here. They were suprised, but told me that mine are very high.

It is because of this website that I am able to know more of what's going on, and what can be done. I feel like I know people, just from writing a few lines, and exchanging comments! So thank you. It's also good to know that someone has been in this situation before and is able to tell me that one day this will all be a distant memory Smile

Thanks for your time, and kind help. Aisha.

ChemoMan

Hi aisha 1

Bone pain is not a feature of lymphoma. It is however found in 25% of leukaemia patients at the onset. All the blood cancers are very closly related.
Dont sweat this too much but be sure to mention the bone pain to the doctor on Wednesday. I'm not sure if you have had a bone marrow biopsy but this is always done prior to treatment to rule out leukaemia. There is a possibility that you have an infection and this could be causing the bone pain, or it maybe muscular in origin due to stress. It is very important to mention this on Wednesday.

I feel for you, you have had an agonising wait with very disturbing symptoms and you should be commended for not losing the plot entirely. As always you are in my thoughts and I hope you get the answers you seek on Wednesday.

Cheers and Good luck
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

OK..................

I am so tired and today has felt so weird. I feel like I am in a living dream but this is all so real.

I have been given a complete diagnosis of 'Classical Hodgkin lymphoma, nodular sclerosis, grade 2'. So well done Chemoman, you were right! You should be working in this field! Wink

Well. I have a long pathology report. Most of it is medical jargon about what the cells were positive for, and what they were negative for.

Tomorrow I have a bone marrow biopsy in the morning and then a PET scan in the afternoon on the other side of London. Will I be able to get up and walk? I thought that this is quite strange?

I stat my chemo on Monday and I will be admitted as a day patient, and then allowed to go home. I will have 6 months of chemo, and it will be ABVD. They have also given me some steroids to take, and a whole load of other things to clean my kidneys and anti-sickness stuff.

So..........what I am most worried about are my kids. How do I tell them? They are on holiday at the moment with my Dad, and they will be back in 10 days. My daughter is astute, and will know what is going on. My son is only 4 but is very aware of his surroundings and I'm sure that he will know exactly what is going on when he sees that I have no hair! Laughing

I don't know exactly what to think now? Will I lose loads of weight? Will I need to have someone living with me? Will I have to eat special things? Will I need to send my kids somewhere? What will I do when I get an infection?

Oh so many questions and so little time!

Ahhhhhhhhhhhhhhh! It feels good to let that out.

Aisha.

ChemoMan

Hi aisha1

Well finally you have your diagnosis. HL stage 2 is not so bad you will be able to fight this. medical science has been having very good results in the fight against HL for many decades now so I am very confident you will be in remission by the time you finish the chemo.

RE the bone marrow you will be up and atom the very same day with very few complications apart from a very mild backache, and it will be mild so don't worry.

Re hair loss, this is not certain as everyone has different responses to the chemo. If it does start to fall out I would buzz it short straight away as it clogs the drains up and gets in your eyes etc, which is very annoying to say the least. Your hair will grow back, you need to remember this as it falls out otherwise it could play havoc with your emotions.

Re the cortisone..... I am not sure what dose they will give you but be aware that this stuff plays havoc with your mind and can throw you into the depths of despair, The danger period is a few days after you stop taking it as the doses given will make you euphoric while you take it and you will crash badly when you stop. If it is a big problem tell the Docs and they will taper the dose off for you. I preferred to get it over with quickly. if you prepare yourself for it it is bearable and like i said it only lasts a few days. This is assuming they adminster the stuff in the same way they do with NHL which is by large pulses over 5 days. Warn your loved ones to prepare them as well, this will help a lot in making sure you don't have lasting problems with your personal relationships.

Re weight loss, I can't really help there as I have no experience with ABVD. With my chemo I actually gained 2 kilos, this mainly being due to the cortisone stimulating my appetite. Once again everyone has different experiences, so only time can tell. Your taste will probably change, just eat what you fancy and don't worry too much about the nutritional content, you can worry about that when you finish. Do try and keep your proteins up, but this should not be an issue, unless you are vegetarian.

Other things are mouth ulcers, which can be bothersome and depressed immunity which leaves you open to infections. Ask people with colds to stay away and avoid large crowds and you should be OK

Re the nausea take your anti nausea pills as directed for at least 5 days afte chemo, longer if neccessary even if you don't feel too bad. This is very important. if you find they don't work tell the docs and they will change them. there is a very wide range of these so you have lots of options.

Keep us posted. We don't have any regulars here with HL so you are a godsend to those who come after you. Good luck, you and your family are very much on my mind.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Hey! I'm so glad that this forum is here. It's great to talk to someone who's been through it.

Today I went for my bone marrow biopsy. That was painful. The way she was jerking that corkscrew shaped thing to get the bone then another one to get into the marrow was not easy at all. The way she spoke about it was as if it is a little needle. When Iwas being shoved with the force of the pulling it was not nice at all. My mucsles have been involuntarily in spasm all day (along my leg and through my back) I think this is normal. She may have messed with a nerve.

I then had some strong painkillers and I was off to the other side of London for a PET scan. As usual, the woman wouldn't tell me what she had seen, but said that they would send it to my consultant.

Today they told me that they don't want to wait until Monday to give me my chemo. They want to start tomorrow. I suppose this is a good thing, but I have no time to digest what is going on or to even think about things. I have a whole big bag of different tablets and take this tip****

LABEL YOUR TABLETS WITH WHAT THEY DO AND WHY THEY ARE NEEDED. I ALMOST GOT CONFUSED!!!

So.......... I start chemo in the morning. This is so weird. Anyway, they started explaining all these things about the vains and how they need to get it straight in, because if it is not in the vain, it can corrode your skin and all this freaky stuff! I am also really freaked out about needles, I hate them. I suppose I will have to get over that fear but even today I have felt really nervous each time I have had a needle. Crying or Very sad

I feel like I'm not on this planet. I am so glad that someone has at least an idea of what this feels like and how it is rushed and feels strange.

I'm happy that I might be able to help someone else with HL. That is a nice idea. I know I am in the minority of people with lymphoma and I believe I am in the 20% of people diagnosed with HL.

Have to go to bed, but thanks for all the updates on appetite and hair loss etc. I'll also keep it in mind about the steroids, mood swings etc.

I'll keep you updated, as much as you keep me updated (I hope to anyway)!

Aisha.

ChemoMan

Hi aisha1

Wow I cant believe they didnt put you under for the bone marrow biopsy. Over here you get a shot of midazolam so you have no recollection of the biopsy at all. I certainly did not have the issues you did. midazolam doesnt actually put you under but does sedate you and it causes amnesia of the event.

Sounds like you are prepared for the fight ahead keep us posted and good luck Very Happy

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

joepet · Senior User Joined: 18 Dec 2008 Posts: 370 Location: Japan

Hi aisha. I've been following your posts, and while I'm sorry to hear the diagnosis of HD, I'm glad that you can begin the fight.

I hear you about the bone marrow biopsy. I too had only a local anesthetic, and didn't really care for it. But it came the day after my gastrointestinal exam, where they stick a camera down your throat, which turned out to be one of the most terrifying experiences of my life, so in comparison it didn't seem to be that bad.

As for telling the family, it is best to be upfront with the facts. That you have a serious disease, but that it is treatable. You will need several months for treatment, during which you will be tired and irritable. You will try to do what you can for the family, but hope that they will understand your limitations and help out when needed. Something like that.

Best of luck to you! I'm sure you'll become part of the growing majority that beat Hodgkins Disease!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

SingleDad

Certainly different here....first day I met the Onc he just walked me into the room next door and with a local shot then stuck a hollow needle in my hip and took the sample then and there...the dry hits were annoying ( two ) the wet hit hurt but nothing big deal.

Rode the motorcycle home and he said stay out of the hot tub for a few days...my hip was a bit sore for a couple days was all.

Pretty casual Rolling Eyes

Aisha - keep a dairy here- you've already started - it will help you keep track and remember stuff to tell the doc and afterwards a record for family and friends of your journey.

I finally let my wider community in on my cancer and remission and many expressed interest in reading the diary as they had family or friends going into chemo and wanted to know .....

The response of goodwill was very heartening - I chose to keep the info orinally tight to a very small circle as dealing with others concern is enervating and you need all your resources.
Once I had an outcome and was in recovery mode THEN I told the tale to some 5,000 clients and friends on my mailing list....been a busy time answering their responses
Very positive energy tho now I can deal with it.

You must tell your daughter - she will understand and be supportive - you 4 year old I'd not.....my 2¢

Preserve your energy - you'll need it but keep the fear down....it does no good and you CAN get through this and beat it...

you are younger than most and do eat - you need the nutrition for your immune system and your body will eventually not absorb well as the chemo kicks in.

Good luck - we're here
_________________
Age 62
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation as a prophylactic measure.
1st Radiation Sept 9 completed Oct 1.
Cancer free scan Jan 2010 - remission confirmed
In South Africa for three months

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