Hello MPN friends, I thought I would post an update on my AML. I am now having Azacitadine and Venetoclax as an in-patient and so far so good - I just have red marks around the injection sites and constipation. I am otherwise well.
Shockingly, my husband has been diagnosed with a melanoma just last week. He is having scans to see if has spread and we are hopeful. It is so hard being apart at the moment.
My CNS has assured me that my treatment might be successful at ridding my body of this and my husband's dermatology consultant is hopeful for him too.
We are not naive, we know how all this could end but we are focused on hope.
Best wishes to you all, Jennie
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Hi, Jennie. Thanks so much for the update. I know you’re going through a rough time right now with both you and your husband not well, but it sounds like you are getting the best treatment possible. I hope and pray for you for a successful outcome.
May the new year bring you good health and bring you and your husband back together again very soon.
Best wishes for a happy and healthier 2024 to you both andvthstvyou are reunited soon. Your posts are always uplifting, realistic but hopeful. Sending virtual hugs to x
Wishing both of you success in your healing journeys. It sounds like you are maintaining a hopeful and realistic perspective. That is a critical aspect of a healthy approach to a difficult situation. Sharing your attitude and journey also helps everyone on the forum. Thank your for sharing what your are experiencing and learning. It is a blessing to have you as part of our community.
I’m sorry to hear that your husband is dealing with a health issue at this same time. It sounds like you’re both doing what you have to do to in this challenging moment. I’m thinking about you and hoping the treatments work and get you on the path to recovery.
I’m glad to hear that the treatment is going okay, I know it’s early days, but if ever there was an award for positivity it would have to be yourself that received it. You come across as so unbelievably strong and positive, and it is something many of us would wish to achieve. Sorry to hear about your husband, please God all will go well for him too. May the new year bring you both good health. God bless and best wishes. Janice
Good to hear from you Jennie, , gee it never rains but what it pours and I hope your husbands melanoma is isolated. I would like to wish you both all the best going into the New Year and beyond. Keep focused and importantly keep on believing.
Hi Jennie, Here's hoping your treatment goes well with few side effects and that your husband gets the all clear and is able to be with you soon to keep you company & support you. Wishing you success in your treatment and continued strength, courage and optimism. We are right there with you.
Sending best wishes for good things - and above all, good health - in 2024.
iam starting stem very soon and I silently followed your story you’ve been so brave throughout and I have everything crossed for you iam so sorry about your husband it’s incredibly hard my partner has been diagnosed with cancer in his stomach after finding a small lump on a scam to check his lungs after pneumonia it was a huge shock I to couldn’t be there as I had sepsis and was in hospital I found it so hard so I understand what your feeling now you are incredibly brave and if anyone can beat this it’s you hold on to that hope we are behind you xx
I am so sorry about your husband's diagnosis, while you have the stress of preparing for your SCT too. I pray for a good outcome for both of you. If the lump is small, I hope that is a good thing. Stay strong xx
Thank you for the update, I’ve been wondering how you were. Sending you love, prayers and positive thoughts. Hopefully the new year will bring better health for you and your husband. I hope you can both develop positive attitudes to help with your recovery. 🙏🏻❤️
My thoughts are with you and your husband in your time of need. I hope that your present treatment is successful in combatting this Jak2 into touch! Likewise, let us hope your husband’s scans reveal a positive picture.
Dear Jennie. I want to join the others in commending you in your positive attitude. There absolutely is good reason to be optimistic & it really does improve our healing. Best wishes for a healthy New Year to you and your husband. Sending positive thoughts, energy & hugs to you. Katie
Thank you for sharing your journey these past years with all of us. You’ve successfully navigated with hope and strength and are an inspiration for me. I’m sorry to hear about your husbands current challenge and wish the best outcomes of continued hope and healing for you both.
Thanks for your update, Jenny. I hope you will not be in hospital too long. I have no idea what you are going through. With MDS and MPN, I am so far only on aspirin and erythropoietin and watch and wait. But have no symptoms other than fatigue, that I might put down to fibromyalgia or taking pregabalin. How can you tell the difference? I hope you have better news aboout your husband, too.😊😊😊
hi Jennie. I’m pleased to hear they are looking after you. I’m sorry to read about your husband too. Talk about it never rains but it pours.
After a disturbing incident over Christmas with my partner getting physically aggressive with me - fortunately my son was there to help me -I too am trying to focus on the positive. I think the incident was probably a result of change of routine but it has scared me a bit
I’m just going to fast forward to the second week of January to avoid a week of Azacitidine, a Bone marrow biopsy and a blood transfusion. The positive in that is that I’ll get them all over in one week!!
I am concentrating on positive vibes for each and every one of us for 2024 (is anyone else shocked that we are nearly a quarter of a century away from worries about ‘the millennium bug’!!)
Let’s all drink to the success of all the scientists working to help us and change the scenery surrounding MPNs in 2024
Take great care Jennie and remember we are all rooting for you xxx
So sorry to read your news. I sincerely hope and pray, that 2024 will see a restoration back to better health for both of you . For me, just taking one day at a time and living in the now , not projecting too far ahead has been a survival strategy, that was useful when our lives were turned upside down. Hope you will soon be able to see your husband again.
Like everyone here I wish you the best of luck with the new treatment. So difficult for both you and your husband at the moment and hopefully the next few weeks bring better news for you both.
You've been dealt a rough hand. There should be a law that only one of you can be ill at once! I only found out that my husband had had a dvt in his leg after my 100 days. It happened on my transplant day so he didn't want to worry me. Luckily he was visiting me in a major hospital so he got good treatment but it was very hard for him not being able to share his worries with me. I hope your husband will still be able to visit you. Do you have any idea how long you'll be an in patient?
I'm so sorry to hear about your husband's experience, especially having to go through that alone, while needed to focus on you. I hope he has made a good recovery and that you are doing well.
He's much better thanks but still has the clot. I'm doing fine (I think). I'll have my 1 year check up at the end of January so I'll post my figures then. I have now had 2 shingles vaccinations so I hope I can stop the acyclovir soon.
I have been following your posts and your SCT journey . Your strength and wisdom are inspirational. I wish you and your husband a positive outcome over the next few months .Sending best wishes Rachel
Thanks for the update Jennie and wishing both you and your husband all the very best with your treatments over the coming weeks. Got everything crossed for you both. xx
So very sorry to read you have more problems & your husband too.I have been off line for months so missed how you were progressing.I am now MF & then we had Wi Fi probs ,now back on line ,sending you & your husband very best wishes for recovery ,you are so brave I have thought about you a lot& tried to be as brave during a long hospital stay.My best thoughts & hopes for you.
Hi jenny hope you don't mind me messaging you saw the consultant yesterday I too have AML going into hospital today for a week for injections the anxiety is overwhelming lost my appetite no energy so tired did you feel the same. I'm thinking will I ever feel better than I do now and get back to doing every day things again.. Sending best wishes to you both.. Luv Sue xx ❤️
I wish you the very best. I have had my first cycle of Azacitadine combined with venetoclax. Some soreness around the injection sites but otherwise not too bad. I feel very weak and nauseous now and I had the rare side effect of heart failure, although that seems to be improving.. They are going to try a different chemotherapy drug and my consultant says it is as good. Like you, I am struggling massively with anxiety.
I will be thinking of you. I have been told that Azacitadine is very good so please don't lose hope xx
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Update
NEW HOPE FOR AML...
Update on my unusual body!
