Oepa side effects

I had NHL rather than Hodgkin, but three of the drugs in your daughter's protocol were in mine - doxorubicin, vincristine, and prednisone.

Prednisone can cause insomnia so make sure your daughter takes it as early in the day as possible.  Some people have problems when they stop it each cycle.  If this happens, let the team know and they will most likely change her dosing schedule so that she is weaned off.

I started losing my hair the day of my second cycle, so I would definitely think about ways for her to deal with that sooner rather than later.

She will almost certainly have a period each cycle when food tastes metallic, followed by a period when everything tastes like cardboard.  Strong flavours can help keep her eating through this period, although which strong flavours will still taste normal is an individual thing.

Get her to rinse her mouth frequently with a solution of one teaspoon of bicarb soda in a cup of water.  Mucositis is incredibly painful and this will help avoid it or lessen it.

If she has a temperature of 38C or above, she needs to go to hospital immediately.  Hopefully she will be given a card to show the ED what needs to happen if she presents out of hours but bloods need to be run urgently and many hospitals will initiate a sepsis protocol without waiting for the results.

She will likely need one or more injections of colony stimulating factor each cycle.  These are usually done at home so you may want to think about whether she'll be fine with doing them herself or whether you can do them.  The hospital will usually do them for you if you really can't face doing them at home, but it's not ideal for someone who is immunocompromised to be going to the hospital any more than is necessary.

Are support people allowed at the hospital where she will be receiving treatment?  The first cycle can be pretty scary even for an adult.  I was terrified.

Is she having a port?  Doxorubicin and vincristine are both extremely harsh on the veins and venous access can become difficult later on of those drugs are continued.

Make sure that you have contact numbers and that you report any side effects ASAP.  There are no prizes for suffering through side effects until the next appointment.

Hi Lolie, thank you so much for your reply. It is so helpful to hear from someone who has been through it themselves.

She actually had her hair cut into a shoulder length bob yesterday as it was nearly down to her bum and she was worried that it would be more distressing for her if she started losing it at that length. 12 inches taken off to be sent to Little Princess Trust - I am so proud of her.

I’ve bought a thermometer so that I can take her temperature regularly throughout. It is important for her to keep warm though yes? Normally the heating gets switched off whilst we are asleep in the night but I was planning on now keeping it on?

She is having a picc line put in as she is needlephobic. Would the colony stimulating factor be inputted through that also? 

She is being treated on the teenage cancer ward. I am able to stay with her on the first day as she has to have her echocardiogram and the picc line put in, as well as the first treatment so will be a lot for her to deal with. But after that I can only drop her off and then pick her up once finished - bloody Covid! But the team on the ward seem amazing so I know she will be in great hands.

Thank you so much for all the advice - I will definitely be making notes of it all!

Hi, 

I didn't have OEPA but some of the drugs used in that regime were used in the regimes I've been having to treat my hodgkin's lymphoma. Most of what Lolie has said is what I would have to say about it as well.

It's very important to keep a track of temperature and any symptoms of sepsis or low netrophils. The hospital have hopefully talked through this with you and given you an card to contact if your daughter has any temperature spikes.

Reading your response to Lolie, I did the exact same with my hair. Mine was very long to and I knew it was going to be more difficult and messy if I didn't cut it shorter. During my first treatment, my hair started falling out in the first week and was quite distressing for me. I thought I could cope with it, so I would definitely look out for a delayed reaction if she's been coping well with the thought of hair loss so far. It all just sort of hits you when it actually starts coming out and I found it a lot easier to get my mum to shave it all off because I felt more in control then and it wasn't just falling out in little bits everywhere. I also recommended getting a baby shampoo, I know that can probably feel a little demoralising to some people, but it is kinder to the scalp as hair falling out can make it quite sore or itchy. 

As Lolie also  said, she doesn't have to suffer through side effects. I made the mistake to think some of the side effects were "not that bad" and let myself suffer in fear of complaining too much which did not help because things can get progressively worse if not helped! There is pretty much something they can suggest to help with everything and in my experience all the nurses and doctors are extremely nice and take very good care of everyone.

If they can prescribe a non alcoholic mouthwash (I had Benzydamine) I recommend that as it's good to keep your mouth very clean and the one I had actually had numbing properties in it which helped when my mouth got extremely sore. Much easier to start out using it before it even gets sore. Same with sickness, the hospital should probably give your daughter some anti-sickness to take and these should definitely be taken beforehand even if she doesn't feel sick yet as it will help if the sickness suddenly comes on. There is usually also a second one that can be used if the first one is not as effective; I would make sure to ask about it.

She may not have much appetite but it obviously is good to keep eating and make sure she is getting food in, but it's not always easy to eat when you feel sick or unwell. The prednisolone steroids definitely need to be taken with food or else it's not so nice on the stomach. They should also definitely be taken in the morning as they can cause really bad insomnia. I honestly found them absolutely awful and they had a lot of mental impact on me and made me very restless. Admittedly I was on a very high dose of them and the nurses said as I'm younger they had more of an effect because younger patients generally have a quicker metabolism. I don't know how much your daughter will be having but they definitely made me feel insane sometimes so I would definitely try to keep an eye on how she's feeling mentally as well as physically. Just let her know if she does feel that way that it's not her, it's the drugs. But also if they're effecting her too much, then I would try to discuss it with a doctor. When I was weaned off them I felt a lot better and more like myself again.

As far as when side effects kick in, generally the first few days will feel the worst and she'll slowly start to feel better during the cycle. However, some days will be worse than others and fatigue and tiredness levels can vary from day to day. It can be a bit different for everyone but generally you get tireder as you have more cycles of treatment as your body has had more of the drugs.

I also had a PICC line put in and can say I've had no issues with it so far and it makes it so much easier than having canulas all the time. The dressing needs to be changed every week though and it needs to be kept clean and dry. Look out for any pus, blood or swelling around it as those can be signs of infection and need to be dealt with quickly. The first few days since she's had it in, it might feel sore and a bit strange but generally you can't feel it at all. If she gets any pain in her arm near the picc line or anywhere on that side then definitely let the hospital know.

If you have any more questions, I can try and answer but obviously I didn't have the exact same treatment as her. I only know things from my own experiences.

I hope treatment goes well for her! I can't say it will be easy because that would be a lie, but it is possible to get through. It may not feel like it at times but we all have strength in us that we didn't know was even there. 

Best wishes,

Hi

My 14 year old son had 2 cycles of the very effective OEPA which are the aggressive ones, then 4 cycles of consolidating Copdac for Stage 3B HL.

He was sick during first lot of OEPA but the anti-sickness regime stopped that for the rest of his treatment.

He did lose his hair during/after the 2nd lot of OEPA, but this came back towards the end. 

His neutrophils went really low once and he was hospitalised over night but he was fine in himself throughout. 

His bloods fluctuated throughout somewhat but don't read too much into those, because as the oncologist said "they are bound to do that".

80-90% success rate using OEPA-Copdac, so stay strong and your team will monitor each individual response very closely and determine what sort of treatment adapatation is needed, if at all.