Hello,
My Mum was diagnosed with MDS with 13% excess blasts in April 2017. She had a SCT on 30 January 2018 and was over 500 days post STC when she relapsed with 22% blasts just this week. However, her consultant is optimistic that Azacitidine with a Lymphocyte top-up will get her back to remission.
Needless to say we are all scared and it has been a massive shock for the whole family.
Does anyone have any experiences with MDS relapse?
Thank you,
Tallgal xx
Hi there, just wanted to welcome you to the forum and say I am sorry to hear of the relapse. I have no experience of this disease as I have ppcl myeloma but hopefully someone will knowledge will respond to your question. We are all here to support one another no matter the circumstances so please feel free to contribute to any of the forum topics.
Best wishes
Alfie
Hi @Tallgal and a great big welcome to our community forum. You have raised a very good topic but I also have not had any similar experience, I have CLL. However what I have realised is that it does not seem to matter if you are the patient, a family member, friend or carer we all seem to share the same fears, thoughts and feelings and as you say you are all very naturally scared and it has been a massive shock for the whole family. We are all here to support each other, but for any queries about blood cancer or you just need to talk, you can contact the Bloodwise Support Services Team on 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. What has it been like for you and how are you coping?
Hi @Tallgal welcome to our community forum. How are you and your family? I can only imagine what a scary time this is for you all, and your Mum too. How is she? While relapse isnāt uncommon with MDS, I can imagine it still came as a shock. Please know our support services are here if you or your family want to talk or need more information, as Erica has kindly posted above. Thinking of you & your family.
Thank you Dawn. It is a scary time. Due to my Mumās overall good health and good response to treatment last time (she was over 500 post SCT before the relapse), it has been decided to pursue chemo and then a 2nd SCT to kick her back into long term remission.
She has just started Flag-Ida. Be interested to hear encouraging stories regarding 2nd SCT as I have seen quite negative comments and stats about them!! Although my Mumās consultants at Addenbrookes have not even hesitated in recommending her for this treatment which can only be positive.
Any support would be very much appreciated.
Tallgal x
Please know you are always welcome to talk anything through with our support services if you would like.
How is your Mum feeling, ahead of her second transplant?
Hi,
I am currently in remission from mds. Iāve had to ensure 3 relapses of mds and 2 sct so I know a little of how your mum is feeling right now!! My basic timelinessā¦
2005 - diagnosed aplastic anaemia, had atg treatment
2011 - diagnosed aplastic anaemia/mds. Had medium intensity non related stem cell transplants
2013 - mds relapsed. Had aza and top up lymphocyte cells
2015- mds relapsed. Tried aza, didnāt work. So had DA chemo and a second sct
2018 - mds relapsed. Tried aza again didnāt work. Had one round of DA and one round of high dose cytarabine. And top up donor cells
Currently in remission!!!
Just to add I have kept a blog the last few years if you are interested. https://emmafightsmds.wordpress.com
Hi Emma, welcome to our community forum, gosh you have been though a lot physically and emotionally. I hope you find the forum supportive and informative. I found your blog so insightful, you have certainly got to know your body and emotions and I love your million dollar questions at the end. I also feel better and then overdo it and suffer the consequences, why do I never learn? I look forward to hearing how you are getting on I feel I will really learn from your insights. Look after yourself.
Thank you Emma - you are an inspiration for sure. Thank you for sharing your story xx
Wlecome to the forum & thank you so much for sharing your experience and your blog @Emma_paine I hope it is helpful to others, and that youāre well at the moment.
How are you and your Mum at the moment @Tallgal - does she have a date or a plan around when the transplant may occur?
Hi Dawn,
The consultants have not decided yet what is the best approach for Mum, whether DLIs from her sibling donor or to go the unrelated donor route.
Has Bloodwise worked with many patients where DLIs have been successful?
Best,
Tallgal
Hello! Page 80 of our booklet on stem cell transplants mentions a little about DLIās https://bloodwise.org.uk/sites/default/files/documents/stem-cell-bone-marrow-transplants-info-booklet-19-09-09.pdf & Anthony Nolan have some information too https://www.anthonynolan.org/patients-and-families/recovery-body/having-donor-lymphocyte-infusion-dli. It is often a common way to treat relapse following a stem cell transplant, and can help achieve remission.
How are you, and your Mum, doing?
Hello,
Itās been a while since I logged into the forum. Iām posting on behalf of my Mum, who in 2019 suffered an Myelodysplastic syndrome (MDS) relapse. She was treated with Flag-Ida and DLIs and made a good recovery. She has been holding a remission for over 3 years now and has been doing so well.
That is until her bloods started to drop after a shingles vaccine about 6 weeks ago - she is getting her BM biopsy results tomorrow and is concerned that her Myelodysplastic syndrome (MDS) has returned.
Has anyone experienced bloods dropping as a result of shingles vaccine? Also is there any hope for further treatment with a second relapse of Myelodysplastic syndrome (MDS)? If that is what has happened, we wonāt know for sure until tomorrow.
Best,
Tall gal x
Hi @Tallgal good to hear from you again, but worrying times for you after three years.
I have had both my shingles vaccines with no problems.
You say that you will have more news tomorrow.so perhaps you and your mum might write down all the medical, thoughts, feelings and practical questions you might both like to ask tomorrow.
Then please do let us know how you get on and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourselves tonight
Thank you Erica - I will let you know what her results are tomorrow.
Hello,
Mumās bone marrow biopsy was inconclusive - signs of Myelodysplastic syndrome (MDS) returning in her aspirate (17% blasts) but then her trephine was normal. Her consultant is going to treat it as a relapse for now, possibly with Aza and DLIs. There was mention of a second transplant also.
Aza seems like the way forward for now - a bit hard to get my head around. Is Aza used only as āpalliative careā?
A bit shell shocked after 3 years of no treatment and great bloods.
Best,
Tall gal x
Oh @Tallgal I expect you do feel shell shocked, I expect you both do.
I find there can be so much information to take in and it becomes like white noise.
Has your mum got another appointment booked or an specialist nurse contact?
If so, perhaps it might be worth writing down a list of questions you both wish to ask.
Isnāt it hard after 3 yrs of no treatment.
I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses .
You have both had a shock today so be so kind to yourselves tonight.
Please let us know how you get on and the Blood Cancer UK support line is there for you if you would like to talk to someone on 0808 2080 888.
Itās so understandable youāre feeling such shock after your mum has been doing well for three years, please donāt hesitate to give us a call on 0808 2080 888 if you want to talk anything through or if thereās anything we can do to support you both.
You might find this page useful to read -
Myelodysplastic syndromes (MDS) non-intensive treatment | Blood Cancer UKā¦
Azacitidine is a type of low-intensity treatment. Low-intensity or non-intensive treatment aims to slow the progression of the disease. It may be considered if a personās blood counts are quite low or falling, or if there are signs that the disease is progressing into leukaemia. The idea is to treat the disease with as few side effects as possible, thereby hopefully maintaining a good quality of life. These treatments will not cure the Myelodysplastic syndrome (MDS) but may āmodifyā the disease.
The best people to speak to about your mumās treatment pathway and the intent of her treatment, will be her treating team. With your Mumās permission would it be an option to attend an appointment with her to ask the more about the treatment plan and the outcome hoped for?
I do hope youāre ok @Tallgal, do give us a shout if thereās anything we can do to support.