AML update : Hello MPN friends, I thought I would... - MPN Voice

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AML update

Otterfield profile image
56 Replies

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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Otterfield profile image
Otterfield
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56 Replies
Spanelmad profile image
Spanelmad

Sending you both hugs and hope.Keep thefaith

Cja1956 profile image
Cja1956

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.

Hollyhedge profile image
Hollyhedge in reply toCja1956

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

hunter5582 profile image
hunter5582

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.

Wishing you both all the best.

GardNerd profile image
GardNerd

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.

bruddery profile image
bruddery

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

Flyingsteamer profile image
Flyingsteamer

Best wishes for the most successful outcome for both of you

Poppy6060 profile image
Poppy6060

Sending best wishes to you both hope all goes well

Poppy xx

JediReject profile image
JediReject

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.

Regards - Chris

ETinNYC profile image
ETinNYC

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.

Hugs to you from NYC.

Leighcox85 profile image
Leighcox85

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

Otterfield profile image
Otterfield in reply toLeighcox85

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

william-Indo profile image
william-Indo

Hope and pray for both of you for the best outcome.

Keep strong and fights till you win this battle.

Happy New Year!

C2Cnext profile image
C2Cnext

Hi JennieI'm adding the energy of my positive thoughts for you to have a good response to the drugs, and for your hubby's melanoma to have not spread.

Thinking positively for you both.

Ebot profile image
Ebot

Thanks for the update. Sending you love and strength and wishing you and your husband all the very best of outcomes in the coming months.

Carol0925 profile image
Carol0925

Thanks for sharing and sending you both positive thoughts. Thinking of you both 🤞🙏🤞

lizzziep profile image
lizzziep

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. 🙏🏻❤️

ciye profile image
ciye

Sending you both hugs and best wishes...

JAB6 profile image
JAB6

Sending prayers and positive thoughts for healing to you and your husband.

Janet

mhos61 profile image
mhos61

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.

May 2024 be kind to both of you. Xx

jointpain profile image
jointpain

Sending you all the best and success in the coming year, keep going.

UKZA profile image
UKZA

Sending you strength, love and positivity. I hope that you won’t be apart for to long. Penny

champ30 profile image
champ30

Sending you my good wishes and a big hug..... you're so strong and brave and such a fighter.Wishing 2024 will be a better year for you both. ...Lynn💞

Aldebaran25 profile image
Aldebaran25

Dear Jennie, thank you for the update, it is such a relief to read this and I wish you both all the very best . Glad there is hope for recovery !

Mudmaker profile image
Mudmaker

Sending healing hugs to you and your husband. Hope 2024 is a better year for you both.

Bluetop profile image
Bluetop

Thank you for the update. So sorry to hear your husand has this diagnosis and you are an in patient, but I wish you both a more positive 2024

Tartanlady profile image
Tartanlady

Hi Jennie, thank you for taking the time to update us. Crossing everything for you to both have good results going forward.Lots of Love

Christine

DiveGoddess profile image
DiveGoddess

Otterfield,

Best of Luck in the New Year to you and your husband. Hoping for peace and healing for you both!

CanadaG profile image
CanadaG

Hi Jennie, I wish you and your husband the very best and hope the treatments are a success.

katiewalsh profile image
katiewalsh

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

Meatloaf9 profile image
Meatloaf9

Thank you for sharing your journey. Only best wishes and prayers coming your way.

Alliswell4me_ profile image
Alliswell4me_

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.

azaelea profile image
azaelea

Sending love and prayers for you and your husband’s return to health and that you can be together very soon. x🙏🙏

MaggieSylvie profile image
MaggieSylvie

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.😊😊😊

Janis12 profile image
Janis12

God bless you both.

Solyesh profile image
Solyesh

Jennie - wishing you and your husband the best and successful outcomes.

beetle profile image
beetle

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

KC63 profile image
KC63

Jennie, so sorry to hear you are facing another battle. Also, your husband. Praying for a successful outcome for you both. Lots of love x

artydutch profile image
artydutch

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.

krotsida profile image
krotsida

Wishing both of you all the best to come this Year🥂

Mostew profile image
Mostew

Best wishes to you and your husband .

DJK12 profile image
DJK12

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.

Scaredy_cat profile image
Scaredy_cat

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?

Otterfield profile image
Otterfield in reply toScaredy_cat

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.

Scaredy_cat profile image
Scaredy_cat in reply toOtterfield

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.

SRH55 profile image
SRH55

I’ve been following your story as I had a SCT in August.

Sending best wishes to you & your husband & hoping 2024 brings you both better health. Sending positive thoughts to you both.

EmeraldA profile image
EmeraldA

Hi Jenni, I have been following your sct journey, and hope the 2024 brings you better news and hope. B X

Bullace profile image
Bullace

All good wishes to you and your husband at this hardest of times. I hope you continue to respond well and that your husband's cancer hasn't spread.

Tintins profile image
Tintins

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

Heidi-W profile image
Heidi-W

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

Afya23 profile image
Afya23

Wishing you both the best outcome on your treatment this New Year.

Inca profile image
Inca

Hi Jennie ,,

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.

Sally,

Daisy-May profile image
Daisy-May

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 ❤️

Otterfield profile image
Otterfield in reply toDaisy-May

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

Jazzyb50 profile image
Jazzyb50

Thinking of you and your husband Jennie xx

GardNerd profile image
GardNerd

Thinking about you today...

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