Hi everyone, I have just found out that I have relapsed, I finished chemo in Aug 2020. Had concerns that were dismissed so asked for a CT this Aug and this week I found out the bad news.
I have been told I will need a high dose chemo and stem cell transplant. I couldn’t take anything in at the meeting this week, trying to research everything over the weekend but would rather talk to people who have been through it.
how long did you have to wait before treatment started?
do you have your own room or on a ward?
how did the treatment affect you?
What about recovery times?
How long is the hospital stay and is it only the once you have this treatment?
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Hi @poppy62. Welcome to the forum. I’m really glad you have found us as I know there are others going through this on the forum who will be be to help you.
Well done for knowing your own body so well. It takes a lot to push for things. However, I’m sure that didn’t make hearing the news any less difficult.
Those initial appointments are so difficult are they, as nothing goes in - it’s just shock and worry and I bet your emotions are all over the place.
When is your next app? Make sure you have all of your questions written down. Can you take somebody with you?
Remember the support line is there if you need it. Sometimes it helps to talk it through and they are great! The details are below, if and when you feel ready.
This booklet might be helpful to:
Please take extra special care of yourself. We are all here to support you whenever you need us X
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Hi @poppy62 I bet you are in complete shock having found out that you have relapsed. Like you at such times I freeze (not fight or flight) and nothing goes in and I feel in a bubble with the world going on as normal around me.
@Nichola75 has given you such brilliant advice I do not know how to follow her response.
There are threads on this forum for people deciding whether to have a stem cell transplant and going through one.
I think it is worth remembering that we are all unique beings and our medical histories are different and that people are sharing their own experiences.
Have you got ant support from family and friends?
I look forward to hearing more about you.
Look after yourself and keep posting so we can support you.
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Hello @poppy62,
I do feel for you getting that news that we all dread. I always feel better once I then have a plan. I have Myeloma which is probably very different but I had high dose chemo and a stem cell transplant in August 2020 and I will answer your questions as best as I can, bearing in mind I don’t know what it is like for people with Hodgkins:
My treatment was delayed a bit by the pandemic but I only had to wait 4 months which I thought was pretty amazing
I had my own room
The treatment went much better than it did when I had my first transplant in 2012. Feeling sick and having a very unsettled tummy were the worst things in hospital. Having a slower processing speed, reduced concentration and worsened memory have been longer term effects but well worth it - I’m not complaining. And my hair grew back dark and curly instead of fair and straight but that’s fairly trivial and I’m grateful I now have plenty of hair.
Recovery times are hard to pinpoint due to shielding but I think it was about 4 months until I felt pretty back to normal.
This time my hospital stay was 16 days. In 2013 it was 5 weeks. I think some of the details of procedure have improved and the nurses were insistent that I drank loads of Scandishakes (quite nice) and Fortisips (not my favourite) to ensure a really good protein intake and I think this may have helped too.
I hope your next appointments will be helpful and bring you clarity and reassurance.
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Apologies - should say 2013 both times for first Stem cell transplant.
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Hi @poppy62
I am so sorry to hear you have been told that you have relapsed, it must be very difficult to take everything in at the moment.
It is great that you have reached out to the group and I see @Nichola75 has put some really good links into her reply, I hope these are helpful. I am sure that you will receive lots of support from the other forum members but also feel free to contact our Support Team if you want to talk anything through, we are only a phone call away on 0808 2080888.
Best Wishes
Jo
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Hello @poppy62 I hope you’re doing okay, it sounds like a really tough time.
Just wanted to make you aware of this thread here in case you want to have a look and/or join the conversation - Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Forum
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Hi @poppy62, I’m in an extremely similar situation. I had Hodgkin’s in 2006 with my last ABVD in January 2007. I just found out on Wednesday that I’ve relapsed and got my treatment plan. I’m starting 2 cycles of GDP on 5th January, then a PET-CT scan to see if it has reduced enough for an autologous Stem cell transplant.
I was given sooo much information but I’ve put it away until the New Year as I want to enjoy Christmas as much as possible. The thing that I’m most upset about is that I won’t be able to go to my Son’s wedding and he’s already postponed it twice due to Covid.
I have spent the last 2 nights reading a thread on here about a few people’s experiences of their SCTs and have found it really helpful, especially the photos of their rooms.
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Hi @WM2022 and welcome to the forum. Wow, that must be really disappointing for you and your son and must me hard to find out about the relapse. I’m glad you found the forum to share on. It’s a great place to be (you know what I mean) to share and support each other. Will you get to see your son over Christmas? X
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Hi @Nichola75, thanks for the welcome 
Yes, I’ll be seeing my son on Christmas Day 
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Hi @WM2022 yes, welcome to our forum and you must be so upset to have relapsed.
Over the last few years since 2007 you must see that there is so much more information out there.
If you would like to talk to someone the Blood Cancer UK support line is there for you and there is also a lot on their website and you now have us on the forum.
Please feel free to join the Stem cell transplant thread, they are all so lovely on there.
As for your son’s wedding, how devastating for you, there is nothing I can say.
The main thing is that your health comes first and please keep posting.
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Dear @WM2022, thank you for posting on our Forum. I am glad to hear that you have found the threads and tips useful. You must be going through such a challenging time but it sounds like you are approaching it well. Enjoying your Christmas is really important. As you go through the months ahead please know that we are also here for you so do not hesitate to contact the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK. Take Care Gemma
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Hi Poppy
So sorry to hear of your news, I can relate to this feeling.Try to focus on the positives you can have a stem cell transplant.
I had non Hodgkin’s and have had a variety of treatment since 2017 as I relapsed. I had my donor stem cell transplant last august 16 months ago and been in remission 17 months. I know my condition is different but I hope this will help you in some way.
It is very over whelming feeling being told you need a stem cell treatment and I couldn’t take it all in and zoned out. I find it useful to do recordings when I go in now.
My specialist nurse was fantastic at providing me information I needed.
Depending on how well you feel and your situation before I was recommended by others going through this to get as fit as you can before.
As this was during lockdown I did online yoga class made available via my hospital maggies support. There are also lot of foundation classes on utube. This also was a great mindful way to clear my head. I also purchased one of those online mini cycles. This helped me as I could use this sitting on sofa or outside when it was warm just to keep my muscles moving particularly after transplant but before also. I even did one yoga class prior to chemo I received on hospital bed. I tried to keep away from internet. Friends and family shared with me many success stories so I focused on this as much as I could.
My take in list:
Phone and charger
Any electronic device and charger
My pillow and my own duvet home comforts including photos of love ones I put up on pinboard over the wall (this made such a difference)
Lavender pillow spray
Facial spray (refresh)
I found Toothpaste with SLS hurt to clean my teeth, I’d recommend sensodyne but probably others without that fizz will do.
Sending lots of positive vibes:blush:
Alice
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thank you so much, I havent been back on here since I posted. I have been in my own little world of confusion and worry. I was supposed to have started chemo on weds this week but had to cancel as I have a chest infection so now its on the 10th. once in remission, then its the harvesting, salvage chemo then transplant. I am still in 2 minds…so pleased you are doing well and thank you for the kind words, Jan
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sorry for the late reply, I have been caught up in tests, scans and a bit of wallowing. I was meant to start the first chemo this week but it was cancelled as I have a chest infection so 10th Jan is the new date. looks like we will be going through this at the same time. can we keep in touch? so sorry you are missing your sons wedding ((hugs))) Jan
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A bit of wallowing is definitely allowed @poppy62 but we are all here to support you and the Blood Cancer UK support line are here during anytime, but especially over the wallowing times.
You must also feel on an anxious whirlwind of tests and your cancelled transplant which leaves you in a bit of limbo over Christmas and the New Year.
Please let us know how you are getting on and take care of yourself and that chest infection.
Be kind to yourself
That must be really frustrating I would want to wallow a little. Please take care of yourself and keep us updated X
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thank you so much. I am sorry for the late reply, so much to take in. I now start on the 10th and feeling very anxious as I cannot speak to either the consultant or nurse. they never answer or return calls. I feel such a pain in the bum and not knowing why they never answer is causing so much stress. I really feel like not bothering with the treatment as I know from last time there was no support and it looks like this time will be no different, Jan
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Oh @poppy62 I am sure you are not a pain in the bum at all and it is natural to feel stressed.
Perhaps you will be able to ask everything you want on the 10th and you can then ask for a contact number/email to answer your queries that you will get a response from.
Don’t forget the Blood Cancer UK support line is there for you for more general enquires.
The hospital’s PALS service is also there for you (Patient Advice and Liaison Service)
Appointments are a 2 way process, I have learnt to be pleasantly assertive, have all my questions etc written down and make sure I cover them all and understand the responses.
Be kind to yourself and please do let us know how you get on on the 10th.
Hi @poppy62. It’s so hard when you have questions and no one to answer them. As @Erica said, contact PALs if you have no luck. Do you have a clinical nurse you can contact or is that who isn’t answering?
As for being a pain in the b*m, I don’t think you are and I’m sure they don’t. You have the right to ask questions so keep a list of all those that you have. Keep us posted on your progress. Sending special wishes X
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