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First round of chemo didn't achieve remission


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#1 HaveHope

Posted 14 October 2015 - 10:17 AM

My partner has an aggressive leukaemia and the induction round of chemo had very little impact. So he's just had another induction round. He needs to be in remission to have a bone marrow transplant. I'm trying to stay strong and positive but what the hell do we do if this round has no impact? Has anyone been through something like this either personally or with a loved one?

Thank you.

#2 Fossy

Posted 14 October 2015 - 10:31 AM

No experience but hoping he gets good results from this round xx

#3 xxyzed

Posted 14 October 2015 - 12:12 PM

My husband had lymphoma so I am very familiar with the path you are on. Ask his specialists to explain the various paths to you. Each hospital has their own preferred path of treatment and the next step of each depends on the response to the previous treatment. With no response it is likely they will keep changing the drug cocktail until they find one that his body does respond to for as long as his body is strong enough to manage the treatment. It is a very hard road to be on for not only your partner but also you and your family unit.

#4 HaveHope

Posted 15 October 2015 - 10:34 AM

View PostFossy, on 14 October 2015 - 10:31 AM, said:

No experience but hoping he gets good results from this round xx

Oh thank you so much! Xx

#5 HaveHope

Posted 15 October 2015 - 10:42 AM

View Postxxyzed, on 14 October 2015 - 12:12 PM, said:

My husband had lymphoma so I am very familiar with the path you are on. Ask his specialists to explain the various paths to you. Each hospital has their own preferred path of treatment and the next step of each depends on the response to the previous treatment. With no response it is likely they will keep changing the drug cocktail until they find one that his body does respond to for as long as his body is strong enough to manage the treatment. It is a very hard road to be on for not only your partner but also you and your family unit.

Thanks so much for your reply xxyzed. My partners medical team have been fantastic and they have briefly mentioned what may lie ahead but I guess they don't really know yet as it depends on how he responds and as we know everyone is different and responds differently. I'm trying not to get to far ahead with 'what if's' but it's damn hard. Anyway, he's fighting an infection at the moment so just have to take it day by day.

#6 xxyzed

Posted 15 October 2015 - 05:25 PM

I found it easier to know the path of the "what ifs", my husband preferred not to know and left it to me to understand the full story and explain it to him as he got there. It is very scary initially but you'll soon find that each adverse reaction and each infection is just another hurdle to get past and as you say all you can do is take it day by day. It sure does suck though. Fingers crossed your partner feels better soon.

#7 BoysGalore+1girly

Posted 15 October 2015 - 08:08 PM

Thinking of you and your husband
very sorry you are going through this

#8 MM03

Posted 15 October 2015 - 08:18 PM

I wish could add something helpful but i just wanted to say I'm so sorry you all are going through this xx

#9 MM03

Posted 15 October 2015 - 08:21 PM

sending all my positive energy and hope next round returns good results x

#10 Anon wife

Posted 15 October 2015 - 08:26 PM

Just wanted to pass on my best wishes for the road ahead.  May your partner be blessed with good news soon xxx

#11 Steggles

Posted 15 October 2015 - 08:46 PM

While my husbands cancer is different (he has brain cancer) I just wanted to send my love and thoughts. It's crap. I really hope things turn around and go well for him! You may find there are good facebook aupport groups?


#12 HaveHope

Posted 22 October 2015 - 09:50 AM

View Postxxyzed, on 15 October 2015 - 05:25 PM, said:

I found it easier to know the path of the "what ifs", my husband preferred not to know and left it to me to understand the full story and explain it to him as he got there. It is very scary initially but you'll soon find that each adverse reaction and each infection is just another hurdle to get past and as you say all you can do is take it day by day. It sure does suck though. Fingers crossed your partner feels better soon.

Thank you and yes it does totally suck :(

Thankfully he's over the infection and doing pretty good now besides a few chemo related issues. It looks like he'll still have a long stint in hospital though until his body recovers from the chemo. His courage and strength keeps me going everyday.

xxyzed can I ask how is your husband doing now?

#13 HaveHope

Posted 22 October 2015 - 09:58 AM

View PostSteggles, on 15 October 2015 - 08:46 PM, said:

While my husbands cancer is different (he has brain cancer) I just wanted to send my love and thoughts. It's crap. I really hope things turn around and go well for him! You may find there are good facebook aupport groups?

Thank you very much Steggles. Xx

I'm so sorry to hear you and your husband are going through a cancer journey too :( please know I am thinking of you both too and sending love and positive vibes.

Yes, I probably should have a look for fb groups, thanks.

#14 HaveHope

Posted 22 October 2015 - 10:03 AM

BoysGalore+1girly, MM03 and Littleboysrock thank you for replying and so very much for the well wishes. Xx

#15 xxyzed

Posted 22 October 2015 - 10:32 AM

My husband died in January this year, two years after diagnosis. He was one of the unfortunate ones that only ever achieved partial remission after each treatment and had lots of complications. He eventually died from a brain infection following his autologous (donor) transplant - really high risk stuff. Every step of the way he was in the "we've never seen this before" category. It was a really bad time for our family and I hope it all turns out much better for you.

#16 Jack's Mummy

Posted 22 October 2015 - 10:56 AM

My mum had acute myeloid leukaemia a few years ago.

She had 4 rounds of chemo, went into remission then relapsed.

Had another 2 rounds, then an anonymous bone marrow transplant.
(May have been less or more I can't remember I'm sorry I will ask my mum)
She heard the words cured at her 4.5 year check up last month.
I'm not going to lie it's been a really cruel difficult road for my mum and my family. She still has some side effects of the bone marrow transplant mainly her body rejecting it to a certain point which shows itself in various ways.

I'm so sorry you are going through this but from what I can gather my mum didn't go into remission from the first chemo treatment either and had to have a few.

My mum is now 56 and is now cancer free. Hers was a side effect they believe from Having radiation related to her breast cancer a few years before.

At the same timers my mum a friend of mines brother in law also had acute myeloid leukaemia.

He didn't have a match for a bone marrow transplant and sadly passed a few weeks after my mums transplant.

Hang in there and all the best xoxo

Lisa

Eta: I know they do a lot of blood tests to find out exactly the different variation of cancer it is. These took weeks and sometimes months to come back which can change the type of chemo and other treatment they give you. There is no set way to treat every patient as every patient has different genitiv makeup.

Edited by Jack's Mummy, 22 October 2015 - 11:03 AM.


#17 HaveHope

Posted 23 October 2015 - 08:15 AM

View Postxxyzed, on 22 October 2015 - 10:32 AM, said:

My husband died in January this year, two years after diagnosis. He was one of the unfortunate ones that only ever achieved partial remission after each treatment and had lots of complications. He eventually died from a brain infection following his autologous (donor) transplant - really high risk stuff. Every step of the way he was in the "we've never seen this before" category. It was a really bad time for our family and I hope it all turns out much better for you.

:( I am so very, very sorry to hear that xxyzed :( sending you big hugs. Xxx

Edited by *Hope*, 24 October 2015 - 10:54 AM.


#18 HaveHope

Posted 23 October 2015 - 08:36 AM

View PostJack, on 22 October 2015 - 10:56 AM, said:

My mum had acute myeloid leukaemia a few years ago.

She had 4 rounds of chemo, went into remission then relapsed.

Had another 2 rounds, then an anonymous bone marrow transplant.
(May have been less or more I can't remember I'm sorry I will ask my mum)
She heard the words cured at her 4.5 year check up last month.
I'm not going to lie it's been a really cruel difficult road for my mum and my family. She still has some side effects of the bone marrow transplant mainly her body rejecting it to a certain point which shows itself in various ways.

I'm so sorry you are going through this but from what I can gather my mum didn't go into remission from the first chemo treatment either and had to have a few.

My mum is now 56 and is now cancer free. Hers was a side effect they believe from Having radiation related to her breast cancer a few years before.

At the same timers my mum a friend of mines brother in law also had acute myeloid leukaemia.

He didn't have a match for a bone marrow transplant and sadly passed a few weeks after my mums transplant.

Hang in there and all the best xoxo

Lisa

Eta: I know they do a lot of blood tests to find out exactly the different variation of cancer it is. These took weeks and sometimes months to come back which can change the type of chemo and other treatment they give you. There is no set way to treat every patient as every patient has different genitiv makeup.

My partner has aml.

Reading about your Mum has given me hope, thank you so much for sharing. We know this is going to be a very tough and difficult road to travel. The chemo is gruelling and we know if we can get to the transplant phase that in itself will be extremely more difficult. But it's what we have to do to hopefully achieve a cure.

I'm so pleased that your Mum has heard those words. Xx

Sorry to hear about your friends BIL that is very sad :(

#19 Therese

Posted 23 October 2015 - 09:06 AM

I am thinking of you and your husband *Hope* and hoping for the best.

#20 HaveHope

Posted 24 October 2015 - 11:01 AM

Thank you so much Therese. Xx

#21 alwayshappy

Posted 09 November 2015 - 01:44 PM

Hope, hopefully they are finding a way forward for your partner.

My sister had Hodgkin's lymphoma and her first line treatment did not work.  She then had to have an autologous stem cell transplant (her own cells) after a high dose chemotherapy.  Fortunately, this line of treatment worked for her and she is still in remission five years later.

I know with HL (I don't know about AML), there are lots of different regimes of chemo they can use to try and find out what the patient responds to - different for everyone.  I'm sure you're in the best hands, as the medical fraternity put their heads together to try and find the treatment that will get your partner into remission for his transplant. Will he be having an allo or an auto?

Try and find some online support forums relevant to his type of cancer, they will be the best source of support for you and him on this journey... and they often know more about treatment options than anyone.

#22 HaveHope

Posted 20 November 2015 - 03:16 PM

View Postalwayshappy, on 09 November 2015 - 01:44 PM, said:

Hope, hopefully they are finding a way forward for your partner.

My sister had Hodgkin's lymphoma and her first line treatment did not work.  She then had to have an autologous stem cell transplant (her own cells) after a high dose chemotherapy.  Fortunately, this line of treatment worked for her and she is still in remission five years later.

I know with HL (I don't know about AML), there are lots of different regimes of chemo they can use to try and find out what the patient responds to - different for everyone.  I'm sure you're in the best hands, as the medical fraternity put their heads together to try and find the treatment that will get your partner into remission for his transplant. Will he be having an allo or an auto?

Try and find some online support forums relevant to his type of cancer, they will be the best source of support for you and him on this journey... and they often know more about treatment options than anyone.

Thanks alwayshappy. That is fantastic news that the transplant was successful and your sister is in remission. My partner will have a allo transplant if remission is achieved.

#23 HaveHope

Posted 19 June 2016 - 09:57 AM

Just thought I'd post an update. After a very strong second round of chemo and a very long, long period of sickness (so many infections, icu stay, more infections) my partner is home but unfortunately and frustratingly he is not in remission. Not sure what the next step will be as the medical team aren't sure he'd be able to handle more chemo.

#24 MrsLexiK

Posted 19 June 2016 - 10:53 AM

I'm so sorry Hope. I hope they can figure something out.

#25 BoysGalore+1girly

Posted 19 June 2016 - 09:57 PM

Im so sorry
I hope you get better news soon


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