Need some advice

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

WOW I nearly didnt get past the registration. i couldn't do the maths question. Brain like mush.

I was diagnosed in October 2008 with Stage 4 B Cell Low grade NHL.
I was taken into hospital as I was in severe chest pain, out of breath and collapsing. They did an X Ray, then 2 other scans and confirmed my cancer. The chest pain was several hundred Pulmonary Emboli (clots in the lungs) they think caused by my tumours being so big. They didnt think I would make it past the PE's. I have just had 6 months of RCVP. It wasnt nice as you will already know.

I have been left with Neuropathy from the Vincristine and spend my time in a wheelchair now as I cannot walk without pain in the feet and cannot feel my hands either. I cannot begin to tell you how tired I am. I spend most of my day asleep and if I go out for about 2-3 hours I am exhausted to the point were I sleep again for another 12 hours. My consultant isnt worried he says its quite normal.
My lymph nodes were up everywhere. One round my heart was 7 inches one in my stomach was 12 inches. They are enlarged neck, collar bone, under arms, chest, stomach, and groin with several large ones inthe groin. Spleen enlarged and although my tumours have now shrunk from the last scan One node is increasing in size.
I know I have been in the wars, like most people here. Oh and the cancer is in my bone marrow too now from the bone marrow sample they took.

Sorry but I dont understand everything and although my consultant is great he doesnt tell me everything.

I had a bone marrow test and it was positive showing cancer. Does this mean I have cancer in the bones, or cancer of the bone marrow? Either way I am not bothered I just dont fully understand

Today I received a call from the Job Centre asking me if I am ready to return to work. I also suffer from Aspergers Syndrome so am unable to work and am under a CPN/Social Worker. She said she had been reviewing my file and that as I finished Chemo in May was I ready for work. She demanded I went in today for a meeting.

Please can someone here help me. I am in no fit state to work and feel so ill. Can they do this to me?

Any help is appreciated

Simon

Don

Hi, My name is Don and I also have Grade I Follicular NHL, but mine is not causing me the problems that yours is.

Obviously your tumors are so large that they are causing pulmonary problems and they need to be shrunk (is that the correct participle of "to shrink"?) down to alleviate the symptoms. I just went through 6 R-CVP's and had no problems with it but it did not affect one of the large nodes, so they are doing two more of R-CHOP. You may be in that same category.

The neuropathy from the Vincristine sounds severe and not normal. I already had neuropathy from an earlier herneated disc in my neck so I am used to it; and I can't tell if the Vincristine added to it. But mine is not nearly as severe as yours. You may want to consider physical therapy. I went to a physical therapist once but am too lazy to do all the stretching exercises everyday; but I can still get around OK.

Further, I think the fatigue sounds abnormal.

Yes, if there is bone marrow involvement it means the lymphoma is in the bones; it does NOT mean you have bone cancer. With that in mind, this is not such a big deal.

All in all, I think you need a second opinion...but remember, we are not doctors, only patients. I am sure that you will be hearing from a few other people.

Good Luck...Don
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

SingleDad · Posted: Tue Oct 13, 2009 9:50 pm Post subject: Re: Need some advice

Wow - Simon - tough times - you need an spokesperson to take the pressure off you....

Got someone close??...last thing you need is mental pressure especially with Aspergers as a side order...

Pick up the phone and form a posse. There is only one thing to focus on and that is beating this and you'll need help with the emotional and communication aspect.

We're here.

Where are you located?
_________________
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

ChemoMan · Posted: Wed Oct 14, 2009 3:53 am Post subject: Re: Need some advice

Hi Simon

Phew that is a tough story. The others have said what I would like to say but I very much recommend you follow SD's advice and form a 'Posse" or a group of people to take up your cause and others like you. Where are you living ??????

Hang in there and don't despair you will start to feel better given time. It may take a while but you will feel better.

Good luck with it and keep us posted.
_________________
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

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

I am in the UK. Have family and friends round me. So i dont have bone cancer but the lymphoma is in the bones. Nope still dont get it sorry. My consiltant did the BM test and he said the cancer had spread to my marrow, Sorry for being thick I dont get it.

I see him again in Jan and see my GP every two weeks. I have heard of a few people having bad Neuropathy and not being able to walk. Hmm I can do about 10 mins but after that my feet burn like hell

Thanks everyone and thanks for the replies.
xxxxx

SingleDad · Posted: Wed Oct 14, 2009 6:51 pm Post subject: Re: Need some advice

Get one of your trusted circle to deal with work situation....never hurts to play the drama queen a bit for the annoying ones Twisted Evil

Not that you haven't enough drama.

My heels were really sensitive - had to put gel pads in and that helped.

My mouth and fingertips are still a bit affected.

Chemoman can likely do a better job but from my understanding bone cancer is a specific type of cancer.

You have lymphoma IN your bone marrow which is part of the limbic system.

So lymphoma is the type of cancer
You have it in your bone marrow and elsewhere.

I have no knowledge of marrow treatment - mine was clear.

As for sleep - do it as long as your body wants and keep eating high energy food to give you body fuel but go very easy on the spicy stuff as your mucous membranes will be sensitive.

Nutrition is important and at the end of chemo you are not getting it all in.

Live yogurt will help get your digestive track working effectively again.

Buckle down a fight and do keep your spirits and humour up - treat yourself too.....feeling good boosts your immune response

good luck

keep us posted when you feel up to it.
_________________
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

ChemoMan · Posted: Thu Oct 15, 2009 2:08 am Post subject: Re: Need some advice

Hi Simon

What the test showed was that you have a late stage of lymphoma stage 4+. It can also determine if you have leukaemia or multiple myeloma but the doctors would have told you that. This explains why you are suffering so much pain and fatigue. The treatment is the same

Lymphoma is a cancer of the lymphocytes in your case the B cells. These cells are made in the bone marrow and in advanced disease the bone marrow is affected. All the blood cancers are related and the marrow is tested to see what type you have and to help with the staging. The blood cancers include all the lymphomas, leukaemias and multiple myeloma.

With the extent of your disease I would think you have an aggressive B cell lymphoma and not a low grade one, as you would have to have had it for a very long time to have such an advanced stage. If you don't mind me asking how old are you?

Aisha1 also had hassles with the job centre, she may be able to give you some tips on how to handle them. It would seem unreasonable for you to attend meetings and go through the process if you are so ill. get someone to ring up and arrange for the CPN to visit you, once she sees how ill you are she should be more understanding.

I hope this all makes sense if not I will be happy to try again.

Good luck Simon keep us posted, You 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 · Posted: Thu Oct 15, 2009 4:29 am Post subject: Re: Need some advice

Hi,

I had actually written you a message yesterday about the job centre as this I thought was your main question you were asking yesterday at the end of your message. I had to delete my post because someone sent me a private message and said that I was 'dumping my problems on you', and I didn't want it to seem like that.

What I had actually written was that I am also going through the same problems. In short, the Job Centre and their people will exhaust even a healthy person. If you are going to try and go through their trials, please get a family member to do it for you. I have the same problem, and I'm sure you have heard of others that are going through the same thing, as this has become a common problem in the UK in the last 6 months.

I don't want to worry you, and I'm sure that it can all be sorted in the end, but it will take a while and a lot of appointments, phonecalls, medical examination from their board, letters from occupational consultants etc.

I think that you should not worry too much, but you should be prepared. Don't feel like they are picking on you because everyone has to go through this rubbish. I strongly suggest that you write down everything that is happening to you, not just the regular or consistant things but the things that crop up now and again. They will try to play down your symptoms. You need to give them a whole list of things that are wrong with you. Don't waiver.

How did your appointment go yesterday?

I don't want to worry you, and that's not why I am saying this. I just mentioned this so that
1) You prepare yourself, and more importantly someone else to deal them
2) So that you know that lots of others are going through it as well, and they haven't just singled you out
3) So that the members of the forum in other countries KNOW the hassles that people in the UK have to deal with on top of cancer and can understand the worries that we face apart from cancer
4) To expose the system and prepare others who view this thread.

So, in short........ don't worry too much, it will get sorted in the end, but they will drag you up to the office all the time, and YOU NEED to have someone else to do it for you.

Best of luck - you're not the only one.......there are many of us, all going through this Job Centre rubbish! Laughing

If I learn any tricks, or short cuts, I'll let you know.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

joepet · Senior User Joined: 18 Dec 2008 Posts: 371 Location: Japan

Hi Simon. Very sorry you have to be going through this.

It is a bit unfortunate that most cancers are named after the place where they originate. In the case of lymphoma, this cancer originates in lymphatic tissue. But lymphatic tissue exists pretty much everywhere in your body, even within bone marrow. In my case, my lymphoma was discovered in my colon. It didn't mean that I had colon cancer, it meant that I had cancer in some lymphatic tissue found in my colon. So it is with yours; lymphoma has infiltrated the lymphatic tissue of your bones, but it is not "bone cancer".

I don't know much about your country's system so I don't have anything new to offer; just like everyone else said, get someone to help you with your fight. Do they have attorneys that work pro bono to handle such affairs.

Good things usually happen to people who don't give up. I believe it shall be so for you as well. Good luck!
_________________
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

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

Hi there

I didnt go to the meeting I get my social worker to call them.

As for the low grade cancer, my consultant seems to think I have had this for about 7 years or more. He said it is slow growing and that it definately is a low grade one. I have been feeling ill for years and years now.

Thanks all for the help, will get my CPN to sort the JC out. As if we dont have enough to deal with. I will gladly work for the 3 hours or so I am awake during the day, Whatever next will this government try to throw at me. Why not target the ones that are claiming and working.

Thanks again

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

Chemo man thanks very much your help is really appreciated and Aisha I wouldn't think for a second that you were dumping your problems on me. I am all the better for knowing. I know I am not well enough to return to work so they can lump it. Thanks for the info.

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

Hope you dont mind me asking what may seem some silly question. the Lymphoma in my marrow, is this what is causing my bones to be sore. I have terrible joints now and sore bones.

Also I had a cough before I got diagnosed for a few weeks, a tickly cough. The consiltant asked me if I had been siffereing from a cough. This cough has returned in the last two days so I am fearing the worst. I am going to book in next week, anyone heard of this??

Thanks again

SingleDad · Posted: Sat Oct 17, 2009 5:58 pm Post subject: Re: Need some advice

The cough was bad for me as well...do you have any sinus issues??

Turned out it was post nasal drip irritating the sensitized mucus membranes - I was worried as well and docs did a lung inspection with an endoscope ( same day as chemo - wow was I wiped ) but found no trace of anything.
I was relieved as the cough was truly debilitating at time.

Not sure on the bone ache.....I was all over the map - early on feeling better than normal thanks to steroids and later many aches and pains.

Not a lot lately.

My understanding of lymphoma is that it is painless but that may not apply to marrow.

You sound much more upbeat than the OP....."stuff it" is a superb attitude - it's your life you are focusing on.....
That's the spirit.
_________________
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

simonfoy · Regular Joined: 13 Oct 2009 Posts: 11

Not that I know of but I had the flu jab last Saturday, had this cough now for two days or so. You just worry dont you when you get the slightest thing.

SingleDad · Posted: Sat Oct 17, 2009 6:09 pm Post subject: Re: Need some advice

I did not know either until I went and asked the doc.

What twigged me to it was I would cough far more when lying on the side I normally sleep on.
Roll over and it was gone.

Knew nothing about post nasal.

Upshot was he gave me a prescription which made me feel yucky.

Then came across a simple remedy - a nasal saline rinse.

Dealt with the problem - easy and in keeping with the mouth rinses.
Dropped my migraine frequency as well.

http://www.amazon.com/gp/product/B000A0S5LG

sometimes simple things work really well.. My staff who had sinus issues really found an improvement.

The frustrating thing with the cough - it did not respond well to things like lozenges and cough syrup and was very tiring at a time when I did not need more stress.

Keep an eye on it but I understand it's pretty common from chemo.

••

Idea

Thanks for reminder - must get over to the clinic for a H1Ni shot.
_________________
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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