Hi, I got my biopsy results last week and have HL. Awaiting for Petscan to stage and then will get treatment plan. It seems that it may be a few weeks to have scan and get results (I had a CT scan last month and it seemed good). I’m anxious about the waiting. How quickly will I start my chemotherapy after getting scan results? Keen to get on with it all.
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Hi @Konstance I am so glad that you have found us, you must be in a state of shock having just had such a diagnosis, I know I was, I came home and wrote my will and funeral music, that was 18 yrs ago.
You have now entered a world that seems to be waiting for appointments, tests, results, treatments etc. and the waiting is the worst feeling for anxiety and stress.
We cannot answer your question as we are all individuals and the haematologist will be getting the bigger picture before deciding when/if you need treatment and what treatment.
Now is your opportunity to write down all your fears, questions, practicalities etc.
We are now here for you as is the Blood Cancer UK support line.
Look after yourself and please keep posting
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Thank you. It’s a mixed bag of emotions, it’s good to have a diagnosis but I’m finding it hard waiting for tests etc. as want to start the treatment as soon as possible. It’s a control thing. Having to learn to have faith in the experts. I’m trying to keep busy and prepare myself for what’s ahead.
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Hi Konstance,
I went through treatment for HL a few years ago. For me, due to some weirdly lucky appointments and scanning slots, I went from CT scan, to PET scan, to start of chemo with 3 weeks. It could have been even quicker but I needed a week of steroids first. I don’t think it’s always that fast though, but generally once things start happening with HL they move quite quickly. For me, it was quite a whirlwind, almost too fast - it felt like there was a lot of things I needed to do or prepare before treatment started, but didn’t have time to.
I would suggest using the time you have before treatment starts to do a bit of preparation and shopping. People’s experience of chemo varies - some are relatively unaffected, whilst others are completed floored by it, so some of these things may be hard to summon the energy for. Try and do some things that will make life easier for your future self, whilst distracting your present-self. Here’s a list of things I wish I had done beforehand -
- maybe spend some time cooking and freezing some meals so you don’t have to slave over the cooker when you’re feeling bad
- make sure you’re stocked up on normal over-the-counter medicines like paracetemol, ibuprofen, and stuff for constipation (unfortuantely common during chemo). You’ll obviously get a bunch of drugs prescribed during chemo, but it’s useful to have the store-cupboard basics in stock too.
- You’ll be entitled to free prescriptions, if you’re not already. Talk to your GP about getting that sorted out.
- Whilst you’re at the shops, get yourself lots of hand-cream and lip-balm as both will get very dry
- Do what you can to get healthy and boost your immune system. Try and get a bit fitter and into better eating habits.
- Maybe take a trip to the dentist to get everything cleaned properly. Chemo can amplify any inflammation you might have in your mouth so get it as healthy as possible. Dental treatment can be more risky during chemo, so get anything outstanding sorted if possible. Maybe discuss with them about mouthwashes like Difflam which can help with some of the sensitivity you might encounter.
- Put together a bag of stuff for chemo days. For me, chemo infusions took most of the day (quicker once I had a PICC line in), and that’s quite a lot of time to kill. Think about what you might need with you to keep you occupied/distracted/comfortable. Also think about what comfortable clothes you will wear, making sure that your veins will still be accessible without having to take lots of layers off. You will probably be trailing a drip around and maybe feeling a bit disoriented as the drugs go in, which can make normally easy things like going to the toilet much harder. Don’t make it any harder by choosing clothers with complicated buckles, straps, clasps. Dress for comfort and practicality during chemo, not fashion. Trust me, everyone else does.
- Chemo will suppress your immune system. Make sure you’ve got some good masks (FFP2/3), hand sanitiser etc., and think about changes you might need to make to your routine to avoid crowded indoor spaces.
- Think about the practicalities of losing your hair. I’m sure the doctor has already told you that most chemo for HL will make you lose you hair at about 3-weeks in. It doesn’t happen instantly though and can be quite a messy affair, and you’ll quickly end up with hairy pillow and blocked shower drains if you just let it fall out gradually. I found sticky lint-rollers to be quite useful for picking up loose ones both from my pillow (and my head!). When it started accelerating, I let the kids shave my head which was actually quite a fun bonding event - when else would they ever be allowed to shave a parent’s head?
- Plan how you’re going to get to and from chemo sessions. I certainly didn’t feel safe to drive home after mine.
- Have a look at all the things you might need to do in the next few months and see if you can clear any of them out of the way in advance - maybe your car/home insurance renewal is coming up, or there are relatives that you need birthday presents for, or jobs around the hourse etc.
I hope this list doesn’t seem too intimidating or scary, but it sounds like you’re looking for things to occupy your time at the moment, so hopefully this stuff will give you a bit of focus and purpose while you’re waiting.
Stay strong, and please do post updates and questions here.
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Thank you so much for your comprehensive reply, such great advice, true I need keep busy whilst waiting to for scans etc. Lots to think about. I actually went to the dentist today to get everything checked out. I’m planning on doing some chemo shopping at the weekend. Definitely use your list to prepare myself. I thank you again for your reply, it means so much to know people who have been through similar experiences are looking out for me. All the best. I’m sure things will soon be underway for me.
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Dear @Konstance, thank you for posting and I am sure you will find the Forum supportive and informative. Once all your results are finalised you case will be taken to a Multi-disciplinary meeting where your specialist teams (Doctors, Nurses, Pathologists and Radiologists) will decide upon the best treatment for you as an individual. This will then be relayed to you in Clinic by your Medical Team. You will be allocated a Clinical Nurse Specialist who will be your key worker and provide you with information, support, expertise and can sign post you to resources. The timing of any treatment will be relayed to you either during or just after the clinic as often bookings and blood tests need to be arranged. I am sure it will be done as possible. Do you have plenty of information about your diagnosis? Just in case I will leave you with the following:I've just been told I have blood cancer | Blood Cancer UK and Hodgkin lymphoma - what is it, symptoms and treatment | Blood Cancer UK. Do take care and contact our Support Services Team if you need to talk: How to contact Blood Cancer UK | Blood Cancer UK
Gemma
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I was diagnosed with a different form of blood cancer @Konstance but once my scans had been done, the treatment happened very quickly. I was having radiotherapy the next day after my PET scan and chemo started 2 weeks later once the radiotherapy course had finished.
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Thanks for your responses, I’ve got my scan on Tuesday and then EGC and bloods, so things are moving forward.
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Good luck with the PET scan on Tuesday. I’m sure it’s already been explained to you, but it’s really important to rest as much as possible in the 24 hours before a PET scan - no vigorous exercise or even long/brisk walks. The PET scan detects cancer by looking for cell metabolism - cancer cells are always busy doing their evil and it makes them easier to spot if it’s not also picking up cells that are recovering from exercise or exertion.
So, take it easy the day before, and take it really easy on the day of the scan. Leave plenty of time to get there so you’re not rushing around beforehand - not just because it will lower your anxiety, but also because it will make the results of the test more decisive.
Best of luck with the scan, and do let us know how it goes.
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Nice to hear from you. I’m not having a good time at the moment, my consultant seems not to be on top of things. I was booked into seen him yesterday for my PET Scan Results but he cancelled as he said he didn’t have them. I followed up with the scanning dept and they sent them to him last Friday. The sent them to the consultant rather than his secretary. They sent them to the secretary today and his secretary said the consultant would call me around 5 but I’m still waiting. I’ve had all the other tests so ready to go. Feel there have been delays and if I hadn’t chased to get the scan and followed it up I’d still be waiting. I got diagnosed on the 1st June so thought I would be starting my treatment by end of this month, let’s hope so. Whole situation has brought me down and quite stressful
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Oh @Konstance how frustrating for you.
Since my diagnosis it feels like I have done a lot of waiting for or chasing medical appointments, phone calls, tests results etc.
Everything gets dragged out timewise.
When I was first diagnosed my GP said that I should take responsibility for my conditions, I did not understand what she meant at the time, but I do now.
Yes, it does get you down and is very stressful, especially when you have fatigue.
But I find saying how it is on our forum just helps me slightly.
Look after yourself and please keep posting
Thank you. I shall press on and hopefully have answers soon and be starting my treatment. I’ve got a lovely weekend planned with friends. I’m not feeling too bad in myself, and I’m sure it will all come together very soon. It does help to post on this forum and thanks for the support.
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There was a slight delay with my consultant obtaining my scan results but finally got to speak with him on Friday, Stage 2. Everything is now in progress (fingers crossed) to get my chemo started, which hopefully will be soon.
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How are things going @Konstance? Chemo started yet? Do you know what it will be - ABVD? BEACOPP?
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Hi, thanks from the message. First chemo tomorrow - ABVD.
Got diagnosed Stage 2 (B). Saw the chemo nurses on Monday and they were lovely and the unit feels a calming place. Got my bag ready. Onwards and Upwards.
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Hello @Konstance
Thinking of you today, having your first treatment. I hope it all goes well and you are looked after by the Chemo team. Remember to ask for any help and support from your family and friends, be gentle on yourself and this Forum is a great place to reach out to for advice and support from others.
Take care, Heidi.
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Hi, I hope it went well. I was also Stage 2B Hodgkins with ABVD and then radiotherapy too. I remember the day of my first chemo felt like a bit of an anti-climax - felt a bit woozie at some points during the infusion, and a bit tired afterwards, but didn’t feel too different walking out of there as I did when I walked in. I didn’t really start to feel the effects until about 36 hours afterwards when my roller-coaster of side-effects started. Please do post back here if you have any questions about the side effects - maybe I went through the same thing.
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Thanks for check-in with me. First session went well, nurses were lovely. It took a few attempts to find a viable vein (I’ve got bouncy veins apparently) so having discussion about arranging for a port to be put in. I’m feel okay, a bit tired and lost my appetite a little. Resting up and drinking water and ginger tea. Went for a little walk early today before it got too hot, may have pushed it a bit. Got a lot of take home meds with timetable of when to take the which my husband is organising for me. Wimbledon to watch.
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I can identify with your awkward veins @Konstance as nurses always need several attempts to find mine! Hearing you’re watching Wimbledon reminds me of the days of my stem cell transplant when I was in isolation and only watching Wimbledon kept me sane. Hope all of your treatment goes well. Keep us up to date on what’s happening.
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