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The PET scan I had last week revealed "Classical Hodgkin's Lymphoma" (mixed cellularity) Stage IIIA
- although I refused to have a Bone Marrow Biopsy previously due to the things I'd read & videos I'd seen - it just looks too painful to go through. (plus there's only a <5% risk apparently) - the consultant was non too pleased & said we'd therefore wait and see how the Chemotherapy goes.
Besides just the one massive swelling on the right side of my neck the PET scan revealed activity around my Spleen, bottom Vertebra and Chest.
I'm due to have 12 treatments of Chemotherapy over the next 6 months starting next week and was given the following tablets to take before and during:-
Dexamethasone 2mg x2
Diazepam 5mg (not together)
Lorazepam 1mg (not together)
My questions are - having read about some of the unpleasant most likely side effects, particularly with the steroid Dexamethasone - would it be possible to leave it and any others out? - or would that just not make any sense?
Should I suffer symptoms of pain (particularly mouth - would there be any harm in taking handfuls of Ibuprofen Extra or Anadin Ultra when mixed with the above?
Good on you for getting this far! Your list of meds looks standard and I think a reasonable way to approach the first cycles of your ABVD is follow the suggested doses and timings for each medicine. With each half of each cycle you'll learn a lot about your body's reaction to the onslaught of chemotherapy - each of us is different and there are many ways to adjust the administration of each chemo drug to reduce side-effects and the host of medicines that are prescribed to help you once you're home and managing without the nurses at your side.
If you can, note the questions that need answering and choose your moment to ask the haematology nurses when you're at hospital - in my (considerable and far flung - but that's a story for another time :)) experience these men and women are a wealth of practical know-how that's shared in plain english - of course, they're human, too, so if its a crazy morning in the ward... or your meds/stress are making it tough to gather your thoughts... get the message across that you need 5mins of advice today before you leave.
Please don't add Ibuprofen or Anadin to your medications without checking with your consultant or nurses first. There can be contradictions that render other medicines more or less effective and their side-effects, too!!
Hang tough Gwizz41, you're about to start getting better - and its not much fun so don't hesitate to vent here - that's what I do when I find the courage :)
Re mouth pain, ulcers, mucositis... become a dental hygeine freak - brush carefully and gently after all your food and ask about a sodium bicarbonate solution to use as mouth wash. It can counter the chemo-related acidity that upsets things in your mouth.
Enough from me, I need more coffee.
Hi Gwizz, in mid-March I was also diagnosed with multicellular Hodgkins but am/was at stage 4b and spent 5 weeks in hospital (a story for another time). My regime at the moment is AVBD chemo every 2 weeks for 6 months (12 chemos) but that could extend to 8 months depending on how it goes. As of yesterday I've been through the first two months of chemo (1a&b; 2a&b) and subsequently discovered that I have a total of about 13 oral prescriptions (including meds/mouthwashes to sort out the chemo mouth). Your list seems fairly standard to me too but remember they probably won't be keeping you on all of them all of the time and they may give you different ones depending on what's going on, whether you have infections, your response to the chemo and its side effects and how you tolerate the oral meds. In my experience, post hospital I get about 3 additional meds to take on chemo day and for the next 2-3 days. One is the steroid Dexamethasone (same dosage) and the others are additional anti-sickness meds. I would echo the advice you've been given - check with your nurses or doctor before taking any over the counter meds. Not only can they interfere with and mask concerning symptoms (such as fevers and feeling unwell), and impact the effectiveness of what you're already taking - they could also make things worse. for example, your stomach will be fairly sensitive and the lining is vulnerable because of the chemo - things like Ibuprofen and asprin are harsh on the stomach lining and could cause bleeding. I asked and am allowed to take paracetamol occasionally for headaches - particlarly around chemo time. But I must admit - I don't find I'm in a lot of pain. Hope that helps. In my drama, I came into the system differently and was diagnosed the first couple of days after I was admitted to hospital when they did a biopsy on my shoulder and found the cells. Although I've had two CT scans, and a MRI, 2 bone marrow biopsys, lung function tests, several echo cardiograms and so forth - I haven't yet had a CT PET. My hospital's regime is that this is done ususally as part of the diagnosis and then after the first two rounds of chemo and finally about six weeks after the full treatment regime is finished. But as I entered the system differntly, I'm having my first CT PET in a couple of weeks and the goal is to have no active lymphoma. If that's the case then I just finish 4 more months of the AVBD chemo regime. If the lymphoma is still active - then they put me on the "harsh stuff" for 6 months. Fortunately the bone marrow biopsy came back clear and the tumours are responding really well to the chemo so signs are good.
EXPLORE. DREAM. DISCOVER
Thanks for your replies - I appreciate the responses and will take them on board. My next question, I kind of feel ashamed to ask but here goes anyway.
"To those that have previously smoked cigarettes or continue to smoke during the course of receiving Chemotherapy"
I've smoked "hand rolling tobacco" for the past 27 yrs and approximately 30 a day - I was told the Lung Function Test showed up as being not so good for a person of my age (45 yrs) - which is obviously to be expected and that my lungs showed signs of damage to a certain extent.
I've continued to smoke since I was first diagnosed with the lymphoma a couple of months ago - and although I've made a concerted effort to cut down - I'm still smoking between 5-10 a day.
I've been strongly advised by my consultant to stop altogether once the Chemotherapy begins due to the high risk of getting a chest infection.
I would expect any professional health authority to say the same thing and non-smokers to say how foolish it would be to carry on smoking regardless - but unless you're a smoker yourself and know how the addiction effects you personally - it's more than hard to just quit.
I've heard you've got to want to stop smoking for the right reasons and have the willpower to do so - most people enjoy smoking besides just being totally addicted to it in the first place. I know it's an expensive, disgusting, bad-for-your-health habit but would like the following advice.
If I were to continue to smoke a minimal amount each day (<5 for example) over the course of receiving Chemotherapy - would the consequences seriously be that bad? or could my consultant be overreacting? - maybe I'm just not taking this as seriously as I should be?
I realise there's a risk factor involved - but would it be as great as has been suggested? - does anyone else continue to smoke? and if so - to what extent? - and just how high might that risk factor be?
One med it is important to take to begin with is the Allopurinol, it's an anti-gout med which is needed for when the tumour burden breaks down, it can cause nasty gout-like symptoms if not pre-treated!
But another idea I can add is to document everything, including how you are mentally on each and every day, after effects of meds that you take too.
Take it with you to each chemo appointment and check anything odd with your chemo specialist nurse, generally speaking they get more time with you and will explain things in ways you can understand!
Drink lots of water, too, your kidneys will thank you for getting rid of excess drugs as thoroughly as you can!
hugs xxx (from the Mum of a lass who has battled through 8 years of treatment as her HL proved resistant-but she is still here and pretty well, certainly able to work!)
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