Author Topic: Husband recently diagnosed with AL Amyloidosis  (Read 9716 times)

Alejandra

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  • Posts: 3
  • Reason for joining: Husband with Al amyloidosis
  • Diagnosed: 1 week ago
Husband recently diagnosed with AL Amyloidosis
« on: July 13, 2016, 09:32:18 pm »
Dear all,

My name is Alejandra, and my husband who until not long ago was a healthy and very fit 39 year old man (he was running marathons and triathlons) has recently been diagnosed with Al Amyloidosis, we just came back from a 4 weeks stay in England where he was assessed at the NAC at Royal Free.
We have two little girls and we have been living in Qatar for about 7 years, we are from Argentina and right now I'm finding this situation very hard to say the least... he will soon have to start chemo, for at least 7 months, but until then we are all feeling very anxious... I find it very hard not to feel anger and at the same time I feel guilty for not being more supportive but I'm scared and knowing he will get worse before he gets better it does not really help :-(
In Qatar doctors are not that great and you can't really find support groups so I'm grateful that this forum exist.
It was in April when he started to feel very tired and dizzy more and more often, then in the mornings his face will be swollen, and then ankles started to get swollen, after running some tests and going to various specialist he ended up seeing an urologist, who later suggested a kidney biopsy, at the local hospital the appointment for the biopsy was set to happen in 2 months so as his condition was everyday worsening we decided to travel to England (where we have friends and we knew we could have better chance to get to the bottom of all this) so after having his kidney biopsy done in June 17th, when the results came we found out there were amyloid deposits and he was urgently referred to the NAC (we were very lucky that he got to be seen in such short time) so after a week he went to the NAC for the assessment (there is also liver, spleen and heart involvement)

We are now back in Qatar as we can't afford to stay in England for the treatment and he's also worried about work and this is home for the moment.

I would like to know how are other patients experiences with dealing with this disease and daily life, how is life with amyloidosis? are you able to go to work when you're having chemo? He is a horse stable manager and even thou his task do not demand to work with the horses directly, the place is huge and he needs to supervise paddocks and check everything that goes on in the farm.

I would really appreciate advices and sharing your thoughts

Thanks for reading!

Alejandra

Lesley

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  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #1 on: July 14, 2016, 03:15:52 pm »
Hello Alejandra

I'm sorry to hear that you are so far away from the NAC in London.
I think everyone reacts differently to the chemotherapy. I can only tell you that I worked all the way through my 6 cycles but half way through I was very very tired.  However, I am older than your husband so not sure if being younger makes your body more accepting.

I do hope your husband manages to get the right treatment.

Lesley

Alejandra

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  • Posts: 3
  • Reason for joining: Husband with Al amyloidosis
  • Diagnosed: 1 week ago
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #2 on: July 14, 2016, 08:13:38 pm »
Thank you Lesley for your reply, wow you're a brave one! and how are you doing these days?
My husband got a call from the local hospital and he has an appointment with an hematologist on Sunday, we're really looking forward to this and hopefully we'll have good news and he can start the treatment soon.

Steve_T

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  • Reason for joining: Patient with AL Amyloidosis
  • Diagnosed: August 2013
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #3 on: July 14, 2016, 09:00:36 pm »
Sorry to hear you and your husband have joined the Amyloidosis family.  But it is a family and you get a lot of answers, support and you'll get encouragement as to what kind of questions to ask you doctor.

With the chemo, you'll just have to see how he responds.  After the first treatment or two, you'll see patterns and they stay pretty consistent.  All depends on his treatment regime.  I was on CyBorD where the D is a steroid that makes you real jumpy the night of the treatment.  The nurses joked with my wife, make sure you give him a list chores for the evening.  The next two days were generally fine, and then on day 3, it hit me, nausea, fatigued, irritable, but nothing that wasn't manageable.  Some times I could make it to work the 3rd day after treatment, other times I just turned around and went home.  So, basically, I was down 2 days of 7 (the day of the treatment, and then 3 days later).  I'm 57 and started this journey at 54, so youth is on your husband's side. 

The tricks are to stay active, but don't overexert yourself as if you were healthy.  Sleep when you need to.  And stay properly hydrated.  That's a unique balance for everyone.  Ask you doctor for ques as to what's hydrated.  Basically if you're licking your lips and urine is yellow, slowly drink a glass of water.  Also, with the nausea, you'll hear stay ahead of the nausea because once it hits it too late.  You'll get a feel for it after the first couple of treatments.  The doctors should have a medication they can recommend if needed.

My doctor started me at the recommended does based on body mass, and after the first cycle (four weeks, three on/one off), increased it since I tolerated it well and the hematological response was good.  Early on I was a candidate for a Stem Cell Transplant, so he wanted to be aggressive in getting the Free Light Chains down.

And the most important thing I can tell you is to keep a daily diary and just jot down "it was a good day" or list symptoms.  This helps you in discussions with your doctor, and allows you and your husband to better track the cycle.  Also, talk to your doctor about side effects.  Let him know how your husband is feeling.  Again everyone responds differently and he may have to alter the treatment regime.  And finally, make sure to let you doctor know about any and all supplements and prescriptions.  And ask what he can or should not eat while on certain medications and treatments.

If your husband is put on the CyBorD treatment regime, the Bor stands for Bortezomib (aka Velcade).  It was a very important part of my regime, but it did make me very sensitive to extreme heat and direct sunlight.  My treatments started in the late Fall and went through winter and following a Stem Cell Transplant in February, I had to do a few more cycles of Velcade in June and July.  Then one day in the field I almost passed out.  It was a side-effect of the Velcade that we didn't notice or think about early on due to it being winter time.  But I had it in my notes for my next visit and we discussed it.

Lesley

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  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #4 on: July 18, 2016, 02:15:53 pm »
Im doing ok Alejandra. I pinch a saying from an American Amy sufferer .... its a new normal!
I felt I had to work through my chemo as I knew I had to go through stc with the recovery time of that, for me, being more gruelling. But again, everyone is different in how they react.
Please keep us updated on how your husband goes on.
All the best
x

Richmar

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  • Reason for joining: wife of Richard wh has AL amyloidosis
  • Diagnosed: 15 December 2015
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #5 on: July 29, 2016, 04:36:19 pm »
Hi Alejandra
Like you my husband has AL Amyloidosis although he is much older.  He started chemo in January 2016 on Velcade injections.  In May 2016 he completed 7 cycles and returned to the Royal Free Hospital in London and was told that the chemo had been successful and no longer needed any more treatment and to go away and enjoy life.

I hope you can take comfort from this knowing that the chemo can work 100%.

It is also important that you stay strong for yourself and your family.

Kind regards
Margaret

patpinchin

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Re: Husband recently diagnosed with AL Amyloidosis
« Reply #6 on: July 31, 2016, 06:38:00 pm »
Hi Margaret,

I was very pleased to read that Richard has responded so quickly and well to his treatment and is on the road to recovery. To be told "go out and enjoy life" is the best you can ask for. With such an intractable form of the disease, I doubt if I shall ever hear such wonderful words from my Drs but I try to stay positive and hopeful. My wait is now in its 14th year and every day remains an endurance test, to which other members of our forum will relate.

To all reading this post......

Many sufferers and families like to demonstrate support and appreciation of the wonderful work of our NAC Doctors and scientists. Every patient owes his/her life to them.

The UCL Amyloidosis Research Fund (ARF) deserves the support of each and everyone of us. The medical and scientific teams at the NAC depend on it to further their clinical and research work.
The Window Company Sale has chosen the ARF as their charity of the year and has recently completed 4 challenging events to raise much needed funds. The Window Company team is trying to reach an £8,000 fundraising target and is very close. If you have not already done so, it would be great to help them do this.  it is not too late to demonstrate your appreciation to the NAC teams by supporting the ARF. You can read of the Window Company's inspirational charity work and donate here:   https://www.justgiving.com/fundraising/thewindowco

In case you do not know how The Amyloidosis Fund uses charity donations: https://www.ucl.ac.uk/amyloidosis/support-us/where-does-your-money-go

Everything for rare diseases costs more money, than illnesses affecting large populations.  Unlike well known charities and large hospitals, those  for rare diseases find it especially difficult to attract public donations. Amyloidosis is a little known disease in the public arena.  The NAC is located in The Royal Free hospital but it is actually part of the University of London, Dept of Medicine.

Thank-you.  :)
« Last Edit: July 31, 2016, 06:57:22 pm by patpinchin »
Pat

David

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  • Diagnosed: 26.2.2015
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #7 on: August 12, 2016, 05:18:24 pm »
Dear Alejandra

As Steve has said, the current "standard" treatment for AL Amyloidosis is CyBorD : cyclophosphamide, bortezomib (brand-name Velcade) and dexamethasone.

Each has its own side effects and those side effects vary greatly between people.

Cyclo is an "alkylating" agent. This is an older class of drugs and is probably responsible for the nausea, gastrointestinal symptoms and general fatigue that many experience.

Dexamethasone is a powerful steroid. Its main side effects are on mood and sleep patterns.

Velcade is a "novel agent". Its main side effect is peripheral neuropathy (ie. numbness and sometimes pain) especially to the feet.

There are many other possible side effects but these are the main ones.

One thing that might be worth considering is to use a two drug combination of just bortezomib  and dex, at least initially, and see what sort of response your husband gets. CyborD (i.e. all three drugs together) is a very effective combination, but there is quite good evidence that the two drug combination of BorD (with the cyclo omitted) is nearly as effective.

I personally decided to go down that route with the option of adding the cyclo later if needed, as I was frankly very nervous of nausea, gastric symptoms or fatigue and so decided in consultation with the doctor, to try just the two drug combination in the first instance. In the event I had four cycles (16 rounds in all) of Bortezomib and dex, but I did not have any cyclo.

I did have some sleep disturbance and minor neuropathy to my toes (which has pretty much cleared up) but I did not have any nausea, gastric problems or  significant fatigue at any time.

I am very fortunate in many ways (I was diagnosed early and the treatment has put me into remission). And obviously you cannot draw conclusions from a single experience. All I can say is that the option is worth considerating, particularly if your husband is hoping to carry on working during treatment as my guess is that it is the cyclo which is responsible for the more debilitating side effects.

Best regards

David 

 

Miriam Vered

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Re: Husband recently diagnosed with AL Amyloidosis
« Reply #8 on: August 14, 2016, 11:22:35 am »
David, thanks for your helpful post. I just want to emphasise that patients should always consult their doctors about their treatment regimes, and shouldn't make any changes without their doctors' approval. I'm sure that was what David meant, I just want to make sure it's absolutely clear.

Alejandra

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  • Reason for joining: Husband with Al amyloidosis
  • Diagnosed: 1 week ago
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #9 on: August 16, 2016, 08:30:41 am »
Thank you all for your replies and sharing your experiences, my husband yesterday had his 4th chemo session, so nearly finished with his first cycle, and so far he has been very brave but sometime I'm concern about him as he is still going to work and I dont see him resting as much as I would like him to... he's really suffering from fluid retention and it has become worse since the chemo started but the docs here havent said much about it... we knew with steroids the problem was going to increase thou I just wish there was something to make him more comfortable.


Miriam Vered

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Re: Husband recently diagnosed with AL Amyloidosis
« Reply #10 on: August 16, 2016, 09:55:30 am »
Alejandra, have you seen our NAC recommendations about fluid balance? It's available in several places in the patient information website, and in this patient information leaflet: https://www.ucl.ac.uk/amyloidosis/pdfs/troubleshooting_drugs-al


I'm working right now on updating all the patient information sheets. The new sheet will include the following additional paragraph:


Monitor your weight and blood pressure daily. It is helpful if you record them in a chart that you can show your local heart failure team during regular reviews. It is important for your local cardiology/haematology teams to agree to an exact, pre-determined plan for monitoring your fluid balance and adjusting diuretic doses in the event of unexpected fluid retention. Many patients may require extra doses of diuretics for a couple of days when they receive dexamethasone during their chemotherapy.


I hope this is some help.

missytwizzle

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  • Reason for joining: husband has AL amyloidosis
  • Diagnosed: 2013
Re: Husband recently diagnosed with AL Amyloidosis
« Reply #11 on: August 17, 2016, 08:51:32 am »
So Sorry that your husband is  are suffering so much with fluid retention.This was a very big problem for my husband while on chemotherapy.
My husbands haematologist prescribed albumin infusions on his Dex,Cyclophos, and Velcade days recommended by the NAC, which was a great help to him.
Maybe this could be an option for your husband.
Kind regards.