We are Macmillan. Cancer Support
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.
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!)
Sorry to be a non smoker chiming in,
I am allergic to septrin and several other antibiotics that are given routinely as precaution to chemo patients due to low immunity etc. As a result I cannot have this and require pentamadine and other anti fungal meds via nebulizer which on a healthy person is quite unpleasant and makes you very chesty.
I would imagine that a smoker would suffer highly if they had to have this... Hope that helps in your decision :-)
I've been a bit quiet of late so thought I'd quickly chime in with this smoking question.
The facts are that smoking is bad for you. You knew that already, of course. Chemotherapy is also bad for you (in a not entirely bad kind of way) and the combination of the two is more than doubly bad. These things are all a risk - not a certainty. I understand 100% how hard it is to quit smoking, especially when you're not ready to do so but now would be a really good time to try to get your head around it.
I had been a smoker up until the time I got my diagnosis and successfully used this as a good enough reason to stop; difficult at the time because I used to hang around with lots of people who smoked and I've got the *worst* self control; I was once described as having a "whim of iron". I did also start again for a while a year or two after the first time I had Hodgkin's but managed to stop again more conclusively with, thankfully, no ill effects (or apparently not, at any rate).
The main culprits here are the A and B drugs of the ABVD regimen. The A causes heart damage and the B causes lung damage. Not necessarily for everybody, or perhaps just not noticeably for everybody and the effects during chemo aren't necessarily permanent. However, smoking causes the lung damage you've already noted and through that stresses the heart. The extra chemical stresses that chemo will be adding into the mix do substantially up the risk factor.
The B drug also has long term effects which can make themselves known quite some time - years even - after you've finished, notably pulmonary fibrosis which is potentially fatal and at best not A Good Thing. I knew and met a lady in the US who had this - in her case perhaps more likely to have been caused by the truly dramatic dose of radiation she received for her Hodgkin's - and she had to carry oxygen wherever she went as her lung capacity was around 10% due to PF.
I still remember an old boy who I used to see regularly in the chemo suite who, once he was all hooked up to his drip, would amble out onto the balcony and probably deal with half a pack of smokes while it was going in, to the scandalised and horrified looks of the other people around. The one guarantee you'll have if you do continue to smoke when this is all going on is that people will point and say "what a bloody idiot!"
If you opt to quit, then good on you and good luck. If not, hope everything works out okay for you.
Chiming in about the question you started this thread with, the tablets you've been given aren't necessarily the complete list and aren't all necessarily needed. In my case, I really got bad effects from dexamethosone (*serious* acid and chronic hiccups) so didn't take that. I took ondansetron (and the similar granisetron) as my main anti-emetic before treatment and actually quite liked metoclopramide.
I never had any of the rest during ABVD but developed an allergic reaction to the chemo so had IV antihistamines before the infusions started (I liked that - knocked me right out and I typically got woken up once everything was done and it was time to go home!) and also had lots of interesting sovereign remedies to keep things moving "down below".
Diazepam and lorazepam? Nice! And if all else fails you can probably flog 'em... :-)
Painkillers? If you need them, I'd guess that your doctors will have an opinion on the best to take. I took ibuprofen for headaches if I got them since I'm not typically a fan of paracetamol which is what I'd guess would be the recommendation. I'm not sure that was with any official sanction though ad it wasn't frequent anyway.
Just my two penn'orth.
Hi firstly in reply to your questions about oral meds,
I only had the allopurinol for my first cycle of chemo (2 treatments), I would CERTAINLY take the antibiotics as you don't want to risk any infection, the anti-sickness meds I would take exactly as you are instructed, certainly for the first cycle of treatment, and then tweak them if you need to after that. I personally haven't had to make any changes to my anti-sickness meds and have been told that they work for 90% of people, so whilst some people on this forum have unluckily fallen into this 10% it doesn't mean that you will, everyone's body reacts differently to medication - you need to wait and see what your body will do before you start crossing things off your oral medication list. With regards to the steroids, I actually had to be put on extra steroids due to the fact that I was allergic to bleomycin and had awful rashes and lung issues (again this is not very common at all, but I was certainly glad of the steroids!)
Secondly, in relation to your smoking query, as someone has already pointed out, bleomycin can cause lung problems (it certainly did for me) and I'm sure your susceptibility to this would be increased if you continued smoking, although you have done incredibly well to cut down so far already. One of my chemo friends smoked the whole way through treatment as he decided it was too stressful to add quitting smoking to his problems already (a view I can certainly sympathise with). However, another friend swears by e-cigarettes, not only are they marginally cheaper (just under 5£ for the equivalent of 20 cigarettes) but they feel exactly the same as smoking, but have none of the health risks (the most popular ones are nicolite and vapourize apparently) you can order these online or the nicolite are sold in most places were cigs are sold anyway. Perhaps these would be worth a go? Well done on reducing it so much already though - I was a social smoker and have certainly missed it, I may be getting an e-cig once I start going out again - they're basically just flavoured water vapour and nicotine - no risks here :)
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2014
what are these?