Cancer growing despite treatment

Hi Beckilu22 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

It's natural to feel as you do when you have a cancer diagnosis and having a rare cancer must make it more difficult for you to find others to talk to who will understand.

I don’t have BPDCN, so can't share any experiences with you, but the online community does have a group for rare blood cancers and if you click here the link will take you straight to it. You can then join and post in the same way as you did here and respond to existing posts by clicking on 'reply'.

There are also posts in the stem cell transplants for blood cancer group which mention BPDCN, so you might want to think about joining that group too.

When you feel up to it, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help

x

Hi Becky, I too have had Bpdcn and am currently in remission and have been since my scn in June 2021 from a sibling. Previous to my scn I underwent about 3 rounds of chemo as an inpatient. Even though I am in remission I am suffering the effects of gvhd sclerotic skin on legs, but I guess at least the bpdcn is in remission.

My treatment was carried out by team in Oxford Churchill hospital and I was primarily treated with donarubinson as high liver Turpin and after with flagida.

I had FLAG-Ida after the immunotherapy and I've just completed 3 rounds of hyper-cvad and am about to have a SCT from my sister in the next few weeks. I'll also be having mine at Oxford Churchill! We must be somewhat close to each other! 

So glad to hear you're in remission but I'm sorry about gvhd. I am worried about gvhd but know I need the sct 

Can I ask how old you are? 

Hi Beckilu22, I just came across you recent post.

Can I recommend that you ‘join’ our dedicated Stem cell transplant (although I see that you have replayed to one post) as you will connect with others who have navigated the Stem Cell Transplant (SCT) Rollercoaster.

I have had two Allo (Donor) SCTs with cells from my brother so know the journey very well.

If you'd like to connect in with a group click on the Green (Bold) link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools” then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.

I will keep an eye open for you

Hi beckilu23. I am currently 56 years old. The act is not an easy journey but worth it for the possible results. I am under Dr penniket and his team. The gvhd symptoms are different for everyone. For some is nearly non existent for others is hard and can last for various amounts to of time. I as we speak am at the John Radcliffe having Ecp Treatmentt my which is where your sister will come to have her cells harvested  as done in same treatment room to where Ecp is done at the national blood service. I wish you the best for your sct or Bmt and take one day at a time. Baby steps is an expression you will here often. 

Hi beckilu22, I today saw my consultant who I believe is same as yours as Bmt or scn outpatient clinic is on a Wednesday. I said if you required it they could divulge any information about me if it helped you in any way physically, medically or mentally. So please ask any questions about me if it helps, or you can also message me about the Bmt / scn process or anything else. Good luck with everything.

Hi Becky. I hope you are well and not too worried. I guess by now you are about to undergo your sct or undergoing it. It is not an easy process to go through but you will get there. Just eat as much as you can when you still can even though the hospital food is not great, as you will lose a lot of weight through not eating due to my Osiris. I was given feeding tubes to try and give me nourishment but unfortunately the tube made me sick. Walk around the ward as much as you can to keep your leg muscle strength up and it may be worth checking you have an unlimited data plan for data to watch movies, face time etc as WiFi signal is not very good in a lot of rooms. Anyway good luck and message me if you want to know anything.

Hi, if you don’t mind me asking, how are you doing now? Congratulations on achieving remission despite the challenges you have faced since. My mum is due to start her first round of chemo next week, funnily enough also in Oxford. Any advice for the road ahead? 

Hey hardtimes,

I think i read this at the time and forget to reply, you know what it's like during treatment. I'm now 20 months post transplant and have just gone to appointments every 6 months. Dr P has said after my next scan they'll stop them. I've had very mild gvhd of skin the first 6 months.  I've completed my vaccines early. Although i struggle with fatigue and joint aches I'm generally doing really well and life has returned mostly to normal. 

How are you?