Starting my ABVD chemotherapy journey

I have NHL and had a different regimen than you but was treated with two of the same drugs (doxorubicin and vincristine).

I had nausea for the first couple of days after each treatment.  Altered taste would usually start within a day of treatment and was the longest lasting of my side effects each cycle.  Mucositis would start around day 3-5.  Neuropathy was variable but it persisted to some degree for most of the cycle.

I had my hair cut short before starting chemo.  It started to fall out the day I had my second cycle and was mostly gone by the end of my third cycle.  I didn't find losing my hair as upsetting as losing my eyebrows and eyelashes.  I lost my nasal hair after the first cycle of treatment.  I had my last cycle of R-CHOP on 24 April and my hair and eyebrows are growing back now.

I bought a couple of turbans and scarves at the start of chemo and I'm glad I did that rather than waiting until I started losing my hair.  I now have a large collection of them.  I expect that I'll still be wearing them for quite a while yet.

There's an international programme called Look Good, Feel Better which is focused on teaching you strategies to look good while undergoing treatment.  I believe it's being delivered online at the moment because of covid.  I definitely suggest looking into it.  When I did it, over half an hour was spent on wigs and various head coverings.  We also received a makeup kit full of high end products (I believe these were mailed to those who couldn't attend in person, along with an instructional DVD).

Hi,

nausea is well known to be a complication of any chemo, they will give you anti nausea drugs, but if the first they give you doesn’t work, please do ask for a change. The finest one out is Emend/Aprepitant, but isn’t cheap so won’t be prescribed immediately.

Take care of your mouth and teeth, they might prescribe a mouthwash, if they do, use it. If not, then use a gentle one. 

Drink lots of water, it helps flush the drug residue and dying cancer out of your system, and helps prevent constipation (sorry, tmi I know but it’s a very common side effect of ABVD) 

Keep a notebook and jot down symptoms and what works for you and what doesn’t, take it with you as sometimes ‘chemo brain’ can make you forget what might be a useful pointer to the nurses. 

ABVD can be tiring, and you will mostly find the first week worse than the second, our daughter felt able to return to work each second week of her treatment (she’s a freelance musician and was in a touring show at the time) 

Keep an eye on your temperature regularly and phone in if it should rise (they will tell you the number limit) but also if it gets much lower than normal, if you feel really unwell too, they would rather advise and see you if needed than try to treat a really sick patient! 

Hair loss is the most obvious complication, and one that everyone recognises, your children will probably be worried, but telling them that it will happen because of the strong medicine you’re getting to kill the cancer, and that it will grow back after your treatment will help. It’s horrible when it happens, but getting your hair cut short will help reduce drag on hair follicles, also you might seriously think about shaving when it starts,  to take back some control? But do check with your nurse specialist if you decide to do this, for the best time in the cycle.  Not everyone loses all their hair, but it would thin a lot. Nasal hair loss can give you a sniffly nose. Look into bamboo/silk beanie hats for night wear as they will collect the hair that falls overnight rather than it ending up in eyes or mouth! The hospital should issue you with a voucher to help purchase a wig. 

Keep posting and remember, no question is too daft!

Hugs xxx

Thanks both for taking the time to reply and for your advice. It’s all so daunting. I start tomorrow and having been all pragmatic about everything it’s just hit me like a tonne of bricks. Hopefully all will go well. I’m sure the fear of the unknown is often worse. Thanks x

I’m sure you will be well looked after! The specialist nurses will be a fount of info and become your friends.

post as and when you wish and feel able. Anxiety at this stage is very normal!

Hugs xxx

Good luck with your first cycle Jules.

Like you, I was extremely pragmatic about having cancer but terrified of my first treatment.  The reality was nothing like I had feared.

Just remember that there are no stupid questions and no wrong feelings.  There's always a friendly ear on here and the chemo nurses will be a great source of support if you let them.

Hi , I was diagnosed last year and had my first ABVD treatment on 15th August . Felt absolutely fine , the nurses were so kind and funny .. there was no doom and gloom !!

Had a PET scan after 4 treatment and it had all gone except for a bit in my hip so went on to have BEACOP.. that was fine too be the regime is harder as it was 3 days treatment- week 1 , 1 treatment the following week with tablets too .. That didn’t shift it either !!!

Next - ESHAP.. another Chemo treatment.. 5 days in hospital but that was fine really .. same old side effects .. I never felt sick but did take anti sickness drugs , and an occasional sore mouth but regular brushing teeth and a good mouth wash really helps .I was a little breathless on ABVD and tired after a few days but just took it as easy as I could .

ESHAP still didn’t shift the last bit so now on Brentuximab Vedotin which sounds great and hopefully this will work , there is so little disease left .. this treatment is fine , really easy and every 3 weeks , on my last one in a few weeks .. phew !!

it is very scary at first but you will soon get into it and if ABVD works .. brilliant !!!! I lost my hair after session 3.. but it came out slowly and I didn’t shave it .. just had it cut short then tied the rest in a pony tail.. got 2 fabulous wigs while I had hair and I loved them .. in fact yesterday was the first day I went out without it as my hair has now grown back lovely ( but grey !!)

my side effect that is hardly ever seen was that I went very brown.. never lost my tan all winter and now am really brown .. that was an excellent side effect !!!

good luck with your treatment.. and don’t be hard on yourself , except as much help as you can and it’s ok to cry !! 
lots of love 

lisa xx

HIya. I don't have kids so cant advise there (though I am sure with lots of love, honesty and cuddles when you feel well they will be great for you and you for them)...but re the hair loss looking back on the treatment I had last winter, it really was, unexpectedly, not nearly as bad as I had thought. I cut my hair short prior to treatment, and then let it fall out and only shaved it when it was really patchy. I wore wooly / beanie hats the whole time. Looking back I think I would have been happier shaving it sooner - it really felt a relief when I did because the process of losing it in such a short period is a lot more depressing than getting rid of it yourself. It sounds a cliche but it was liberating..and also there is a sense that the only way is up. It grew back soon enough and my eyebrows have grown back fully which I was most worried about. good luck!