Recently diagnosed

Hi Tom,

It is the scariest most difficult thing to hear that you have something like this. I have NHL and am due to have my 12th chemo at the end of the month You shouldn't ever worry about asking questions, ask everything that comes into your mind. I felt numb when I found out, that then went to fear. Then came the tears for my girls. Once I had got it settled into my head I made a decision that I wasn't going to live with cancer, it is going to live with me. I ask my consultant about anything that concerns me and he's brilliant and answers all of them in terms I can understand. What I'm trying to say is just feel how you feel until you get the strength and knowledge to understand everything happening to you. Ask as many questions you want and need to anyone who can answer them. Finally, never allow this monster to run your life, you dictate to it how things are going to be. Rest when you're tired, cry when you're sad but throughout it all laugh as much as possible, enjoy everything and always keep fighting. Hope anything I have said here will help.

Jude 

Hello Tom,

so sorry you've been hit with this, and at a busy time of year too. As for questions, ask away! The reason for the biopsy is to help them 'stage' your disease, which in turn helps them decide what chemo and how much to give you. They may also suggest a scan. 

The chances are pretty high that the chemo of choice will be ABVD, named after the initial names of the drugs. It's a fairly harsh but do-able chemo regime, you will have lots of help with it in terms of anti-sickness medication, and if the first lot doesn't help then do tell them. It might help you and the team looking after you, to start a sort of log or diary, listing all things that happen. 

Sending you hugs, folk DO get through this and straight into long remission (they don't seem to like the 'cure' word these days)

xxx

Hi Tom,

Sorry to hear about your diagnosis, very difficult news to begin the year with.  

I think the waiting is one of the hardest parts because your mind can go in to overdrive with all the possibilities.  The mantra in my family became "we'll know more tomorrow".  As you said, the treatments are usually very effective and hopefully you'll have great care from your doc's and nurses.

It was exactly a year ago tomorrow that I had my first biopsy and a diagnosis of stage 3 NLPHL (a type of HL) followed.  I wouldn't have believed that a year on I would be in remission and feeling better than I have for a few years!   So hopefully that encourages, take each day at a time.

Is tomorrow your first biopsy?  I think they sometimes remove an affected lymph node next to work out the stage.  One of the things that reassured me was that they told me this isn't a kind of cancer where they need to act fast to stop it spreading, it is a kind where they need to take time to get an accurate diagnosis before deciding the best treatment.  

There's great support on this site and people with so much knowledge and experience, I still find myself drawn back to read advice and encouragements.  The Lymphoma Association website also has a lot of helpful info, but you may not want to read too much before you know more about your diagnosis.

All the best and hope this helps,

Hannah 

Hi tom

Welcome to the group,sorry youve had to find yourself here but it is a busy keen helpful group.

Your feelings are very normal. It should all happen pretty fast after your biopsy and soon have your planned treatment all set to begin.

The diary idea is great,we have had it from day 1 of chemo and were up to 9 out of 12 abvd (5a out of 6 cycles)but its so useful to look through how you was after each treatment especially the early ones things like how you felt,times that you took medication,,what you did,what didnt agree with you;what you ate.....

Hugs

thank you so much for your replies! 

Yes tomorrow is the first biopsy. I guess it's just worrying, but equally everything needs to be diagnosed - I think it's good to hear that it isn't the sort that needs to be acted on quickly, rather thoroughly identified before getting treated. I think that it's the not knowing that's hard.

I've actually started blogging during this so I have somewhere to put out my thoughts - I'll put a little diary on that so I know what's happening.

As for the chemo... I guess it's almost a positive thing once it starts because you at least have a plan in place and know you have to get through it. I've been told and heard (I haven't read too much yet because it's a) a bit overwhelming and b) I haven't got my full diagnosis yet) that it's primarily a tiring thing. Is that right?

Hi again Tom,

If your biopsy includes a bone marrow biopsy then be prepared to feel a bit sore. If they do this, then ask for the local anaesthetic to fully take effect (bit like having a filling at the dentist, if it's rushed then you feel more)

The chemo affects different folk in different ways. The process is the 4 drugs on day one, then again on the same day 2 weeks later which makes up a course. Usually the first week of the two is the one where you may feel a bit 'rubbish' (but not everyone does)the second is usually ok. The whole course does become tiring, but partly it's just the constant turning up at hospital and the inevitable waiting around, to be honest! 

In daughter's case (in 2004, so way back) they didn't seem to do very much for nausea so she did feel rubbish, but managed to work every other week. It didn't help that she never admitted to feeling that bad, they could have given her better medications to help her, but since she didn't say, they didn't know how bad she felt! (vicious circle, eh?!) 

Yes, once you know what they plan then you can cope, it's the not knowing stage that is tough. But remember there are lots here who know exactly how that feels, so keep posting! 

hugs xxx

Hi Tom,

As others have said welcome to the site and very sorry you have had to join us.  I was diagnosed with HL 4 weeks ago now, the result of a biopsy late November and start chemo on Friday, I had a PET scan just before Christmas and still waiting to find out what my "stage" is as the festive season got in the way.  The diagnosis came as a shock as apart from a cough, breathlessness and tiredness I had none of the normal symptoms associated with it, I was convinced it was my medication for high blood pressure as the side effects are very similar which I'd had for years.  It didn't help that after my biopsy the hospital recommended that I came off some of the drugs and bingo I started to feel better than I had done for years I'm still in a state of shock and fear as I've yet to find the extent of it.  I was told by one of the hospital nurses that if you had to make a choice of a cancer to have HL would be the one to choose as the prognosis is very good.

My feelings at the moment are those of confusion and anxiety, I've read loads about it on the web, probably too much for my own good and I'm now worrying about how I will be affected by the treatment side effects but I keep reminding myself that my consultant spoke about curing me.

Keep positive, things really do move fast once the diagnosis is made, don't sit waiting for the post you'll get phone calls and keep posting, it really does help to talk to strangers in the same "club" as you.

Best wishes,

Phil

Oh my thank you so much! You're right, it's really useful to have a conversation with people who also are going through a similar experience, seemingly at random.

I had my biopsy today and feel okay. I have a ct scan on the 12th and a meeting with oncology on the 14th so they're not mucking about.

Is the meeting with the oncologist the one that sets the treatment plan in train?

Yup, that meeting will have the haematologist knowing what stage and they will have a plan for your treatment! At least, it is usually a haematologist rather than just an oncologist (a haematologist knows more about blood cancers)......

Keep posting, there are quite a few going through this, at differing stages, they will all jump in with ideas, strategies and answers to questions! 

Hugs xxx

Hi Tom,

Glad to hear that your biopsy went well and things are now moving, as moomy has said your lead consultant will probably be an haematologist - mine is.

Depending on when you last saw a dentist you may like to consider paying them a visit before starting chemo.  My wife had an appointment this morning and I had one for early February, so I thought it may be a good idea to go and have a chat with them and to their credit they squeezed me in immediately for a check-up and a scrape and polish so I don't have to worry about routine dental problems for the next 6 months.

Phil