I think I have lymphoma

[audikentman]

Thanks again for all the kind words and encouragement
@lxm, I'm no expert but I'd ask my GP for another blood test, a lot of your symptoms are the symptoms of lymphoma, if you have read my 1st post on this thread they are pretty much my symptoms,(except the weight loss and groin lump) I had a cough which I couldn't shift which got me to the doctors then the other symptoms started to develop.
How long ago was the blood test? I saw mine, horrific, almost every marker was either high or low and obviously altered my doctor that something was amiss.
The main groups of lymph glands are neck, armpits and groin, but I think they can just swell without anything being amiss. Best of luck and keep us updated

[audikentman]

If you haven't seen this already

http://www.nhs.uk/Conditions/Hodgkins-lymphoma/Pag...

The blood test will show if do/don't have lymphoma but you need a biopsy to show if its Hodgkins or Non Hodgkins.

I had a blood test last July, just because I kept feeling fatigued, (1 of the symptoms of lymphoma)didn't show up anything unusual, and doctor came to the conclusion that I was just cycling too much (200 miles a week) combined with shift work was the cause and that was fine, then got a flu bug in October that put me in bed for 4 days, consultant seems to think those 4 days gave my white blood cells the opening they needed to cause havoc in my blood.

[audikentman]

I just had the standard 1 vial blood test at the local hospital, some of the markers that came back were,
Heamatocrit =37.3% Low
High ESR
Total white cell count = 14.4 10*9/L High
Platlet count = 473 10*9 High
Neutrophil count = 11.4 10*9/L High
Monocyte count = 0.9 10*9/L High
Mean corpuscular volume (MCV) = 81.4 Low
Mean corpusc haemoglobin (MCH) = 26.6pg Low
And it goes on, no idea what it all means using Dr Google the results can mean different things individually , but all put together they must have alerted my Dr that something was wrong, was referred to Kings who then did some more tests including more detailed bloods 9 vials this time, along with a needle biopsy and scan of the lymph node set the ball rolling.

[audikentman]

Thanks, you are right, and its impossible to describe it to anyone who hasn't experienced it either.
Had my blood test of Friday hopefully all ok for Tuesdays ride with the Red Devil of chemo, if the blood count is down they said they would rather give me a blood transfusion before the chemo than postpone it as they want to keep the sessions regular every 14 days.

[audikentman]

2nd session of ABVD treatment yesterday, felt fine, just tired, must be the affects of the premed, feel fine today, although that may have something to do with the 11 tablets I had with my breakfast, will be 14 in total today (including a senakot to keep things flowing, if you get my drift) bracing myself for the Red Devil roller coaster over the next couple of days. 2 sessions of ABVD down 6 to go. Lymphoma can go fk itself!

[audikentman]

Thanks for the positive vibes all. Big clump of hair in the shower this morning Thought I'd make it to my 50th birthday with my silver locks, on the plus side now I should at least make it to my 50th birthday Only 7 tablets for breakfast today and it gets a lot less after 3 days, most are anti sickness after the chemo. Then start building up for the next session. Everyone says the chemo and the radio knock it out of you more physically than the lymphoma, but the chemo and radio are making you better its the lymphoma that will kill you.

[audikentman]

Cheers, booked a weeks holiday in September to give me something to aim for once the chemo etc has finished. I'm feeling confident , after the 1st session the cough and night sweats stopped, the lymph nodes on my neck shrunk, now after 2 sessions the nodes on my neck have gone. 2 down, a meeting with the consultant after 4 then another 4 to go

[audikentman]

Had my 3rd (of 8) dance with the Red devil on Tuesday, went ok until Tuesday night, couldn't sleep more than about 2 hours, my legs felt like they had fire running through them and what felt like acid in my throat on the positives all most half way hopefully and 1st Day in over 2 months I've not had to take any tablets for breakfast.

[audikentman]

Yes, booked a week in Turkey just after my birthday, something to relax and take my mind of the treatment, works out about a week before I go back to work, just wanted something to pull a full stop on the treatment and then look forward to 2016.

[audikentman]

Thanks for the wishes and good vibes everyone, getting ready for the Friday blood test then a 'good' weekend before getting ready for Tuesdays 4th (of 8) chemo blasts.
@Moominho really sorry to hear about your Dad joining the Hodgkins club we are a pretty exclusive club, only 1,700 a year in the UK, compared with 50,000 breast cancer cases, I would guess though its a better cancer than what you 1st thought it was though, they consultants all say its one that has a high treatment success rate. If you want any advice on what its like please ask. I've cut meat from my diet as it can hinder your digestive system and it also lets you eat more fruit and veggies at every meal, I bought a Nutri Ninja juicer if my mouth gets any ulcers straight after the chemo session I just blitz some stuff into a juice or smoothie to still get my vitamins in. I've tried to face this head on and fight the fker. I found this blog the other day and it could have been written by me tbh http://www.chroniclesofacancerpatient.com/

[audikentman]

Thanks, I hope they get something sorted for your Dad soon, my 1st blood test was ordered by the Doctor on 16th February, I had my 1st session of Chemo before the end of April, things seem to move pretty fast once the wheels are put in motion.
Blood test done yesterday, I'm suprised I have any left, hopefully the counts will be ok, now on countdown until the next dance with the red devil at Kings Collage Hospital on Tuesday that will be number 4 of 8, halfway

[audikentman]

4th of 8 sessions today, halfway there
My white blood cell count was high in February 14.4 x 10 9/l. Results for Fridays test were @ 0.6, due to them being so low I had another test before todays chemo now @ 0.26, they should be 4 - 11 x 10 9/l (4,000 to 11,000 per cubic millimeter of blood) If I understood correctly
I now have a nice goody bag of even more drugs than usual including 6 shots of Zarzio to inject into my stomach for the next 6 days

Edited by audikentman on Wednesday 10th June 16:05

Edited by audikentman on Wednesday 10th June 16:15

[audikentman]

@Moominho Sorry to hear about your dad, I'm sure he will smash it.
A guy at work was diagnosed with NH Lymphoma, had 6 sessions of R-CHOP, 1 every 3weeks iirc, but the chemo is tailored to each patient now, (age weight etc,) I've found that eating healthy (loving my Nutri Ninja juicer) and staying positive have helped.
My treatment is every 2 weeks and it seems I have 7 bad days(after the session) followed by 7 good days of everyone saying 'You don't look ill' I think everyones image of someone with cancer is they lose all their hair and about 30 kilos, halfway and my hair has thinned but I still weigh the same. The good thing is now with the internet is there are plenty of websites and blogs where you realise you are not alone.

[audikentman]

My ABVD chemo is pretty standard for Hodgkins in the same way R-Chop seems the standard for NH Lymphoma. I have 2 week cycles pretty much write off the week after my Tuesday treatment, seem start getting better about Saturday, and then 7 days after (today) feel fine.
You are best being super paranoid about infection, seems to be 1 thing that the hospital warn against due to a low white blood cell count and the possibility of delaying the next treatment, I have a digital ear thermometer and check my temp morning and evening, and I have plenty of alcohol hand wash in my house and anyone who comes in has a squirt, I also tend to wash my hands and then also apply it to my hands hoping that it will end up coating door handles etc. Also if anyone comes round or if I meet people on the 2nd week of a cycle I will ask if anyone has a cold etc, I'm possibly being a bit Howard Hughes but halfway through and I haven't had a temperature, the worst I have had is a couple of days of mouth ulcers hence the juicer.
Good luck with your Dad it may help to look at or join some of the internet or Facebook support groups around, they have saved me from heading to A+E or phoning the NHS in the middle of the night when I've seen the symptoms are experienced by almost everyone having my treatment.

Edited by audikentman on Tuesday 16th June 19:39

[audikentman]

Blood test tomorrow and a heart echo cardiogram with a side order of omeprazole from the doctor to stop heart burn. Then another round of chemo on Tuesday.

[audikentman]

1 hour and 5 attempts to get a cannula in a vein, a dance with the red devil and 3 other drugs followed by a cheeky chest x-ray and a bag of drugs to take away at the end. 5 down 3 to go

[audikentman]

Thanks, halfway for the chemo seems a bit of a milestone
I hope its going ok with your father.
I had a C.C'd letter today from the Hospital to the Doctor this morning. The basics are
'' I reviewed this gentlemen in the clinic today. He has now had two cycles of ABVD and has tolerated this reasonably well without any infection. His breathing is much better since he started the chemotherapy and also his cough has settled now.
On clinical examination there was no palpable lymphadenopathy or hepatosplenomegaly. Respiratory system examination was unremarkable. Cardiovascular system examination revealed normal heart sounds. He also has intermittent chest tightness and I have organised for him to have an echocardiogram to assess the LV function. He will proceed to complete the next two cycles of ABVD and have a PET scan followed by radiotherapy.''

I'm not sure I'm looking forward to the radiotherapy but I've not really got much choice tbh.
Have a good week everyone.

[audikentman]

Latest up date, hair has gone apart from a niffy Mohican, I was more fed up with unblocking the shower than anything. Apparently the reason you lose hair is the chemo drugs attack and destroy fast growing cells, the fast growing cells in my body are the lymphoma, hair and nails. My grey hair fell out 1st as these apparently the weakest.
Yesterday was my latest session took 4 goes to get the cannula in a side effect is your veins turn to drinking straws, although I was told they heal themselves.
Got home from Kings and felt cr@p the worst ever straight after a session, normally takes a couple of days to get the chemo blues.
Still on the plus side just taken the post chemo 10 pills and a few more during the day. No injections to the stomach this time and not needed a blood transfusion so far.
6 down 2 to go.
When you look at what was being rembered in London as I was going in to the chemo room yesterday it puts my health worries into context.
Remember. Remember you maybe having a bad day not a bad life.

[audikentman]

Thanks, I did ask the nurse about a line this time as I was strung out on the pre-med and he seemed confident I could get through 1 more round (2 sessions) of chemo.

[audikentman]

A question for anyone who has had ABVD chemo, or any chemo with steroids. Did you put weight on during it and did you lose it when you went onto radiotherapy or did you lose it once you had completely finished chemo and radio or didn't you lose it. Thanks
I've put some weight on since April but not sure if its due to the steroids or being to sick or tired to do much apart from a walk to the shops once or twice a week when I'm feeling ok.