Author Topic: Complementary Therapy  (Read 20509 times)

JellybabyJan

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  • Reason for joining: Husband Mike has AL Amyloidosis in Heart, Kidney's, Liver;Spleen and nervous system
  • Diagnosed: Apr 2013
Complementary Therapy
« on: February 24, 2015, 06:31:41 pm »
Hi

My husband is on his third lot of chemo, (Pomalidamide), and the side effects are really getting him down. He's has hand tremors, dizziness, breathlessness,extremely tired to name a few. He is finding day to day life very challenging. My question is, are there any complimentary therapies that anyone has taken or can recommend to help reduce all of these horrible side effects.

He's 49, diagnosed in April 2013,previously had Velcade, then Revlamid. He has AL Amyloidosis in his Heart, Liver, Kidney, Spleen and Nervous System. He's on PD Dialysis every night. Oh and to top it off he takes 46 tablets a day and 66 on Fridays (steroids)!!!

Thanks

Jan  :)
« Last Edit: February 25, 2015, 07:47:39 pm by Miriam Vered »

Helen33

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Re: Complimentary Theraphy
« Reply #1 on: February 24, 2015, 08:21:51 pm »
Hello Jan, Welcome to the forum.  I am sorry to hear how your husband is struggling on the treatment.  I experienced similar when I was on my second course of chemotherapy.  My life practically came to a stand still.  I found the steroid component of my treatment caused more problems than it solved.  I know that we all react differently and other people I know on steroids are fine.

I don't know of any alternative medication that could help but I have found meditation highly valuable. I have also been helped by the practice of mindfulness.  When I was very ill in hospital a couple of years ago, I felt desperate for a nurse or doctor to acknowledge my suffering.  I had a compacted bowel and no one was prepared to help me.  I texted a Hospice therapist that helped me after my husband died.  She came to visit me and offered a guided meditation.  It was wonderful to escape my situation for a little while.  I'm sure this experience helped me to beg a nurse for help a day later.  He tended to me throughout the whole morning in a determined effort to clear my bowel.  That meditation was like a seed that had been sown which I started to water and feed so to speak.

I do hope that your husband finds some help.  I will be interested in the contributions of others as I am open to all kinds of help.

Best wishes.

Living life with Amyloidosis

JellybabyJan

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  • Reason for joining: Husband Mike has AL Amyloidosis in Heart, Kidney's, Liver;Spleen and nervous system
  • Diagnosed: Apr 2013
Re: Complimentary Theraphy
« Reply #2 on: February 24, 2015, 09:58:28 pm »
Hi Helen

Thanks for your reply. Glad meditation helped you, not sure my husband would be willing but anything is worth a try in my book!

Jan

alisonjayne

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  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Re: Complimentary Theraphy
« Reply #3 on: February 25, 2015, 07:03:22 pm »
Hi Jan,
Sorry to hear that your husband is suffering from horrible side effects. My husband suffered a range of symptoms associated with amyloid in the nervous system,  heart and gut (mainly swollen tongue). Whilst he didn't get well enough to go on chemo I persuaded him to try acupuncture which after some reluctance he did have for about 4 months, most weeks, sometimes twice a week. We felt it helped energy levels and sleeplessness and it may have helped to control leg cramps. I  definitely think  it helped him to maintain a positive outlook which felt essential. At that point he didn't know it was amyloid. We didn't have a clue what was going on. David was even persuaded to try Chinese medicine and in his first consultation the Doctor was alarmed at how weak his heart, kidneys and gut was. He went into hospital soon after and didn't take the foul medicine for more than 5 days so can't really comment on that.
I think reflexology is worth a try just for the blissful relaxation it gives when suffering a  horrible illness.

My close friend has recently been diagnosed with breast cancer, and although amyloid isn't cancer, she researched the positive effect of diet choice on the effects of chemotherapy.  The Penny Brohn Cancer Care Centre in Bristol gives good advice on holistic care and diet to assist with treatments and could be relevant. I think they have a website.

I hope your husband finds relief and improvement very soon.
Alix

Mark McConway

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  • Diagnosed: March 2011
Re: Complimentary Theraphy
« Reply #4 on: February 25, 2015, 08:30:02 pm »
Hi Jan,

The way that you've described your husband's discomfort at the moment resonated a lot with me.  After I’d been diagnosed with AL Amyloidosis, I had my chemo over a few months starting in April 2011.  My Amyloidosis affects all the organs that you've mentioned but my nervous system escaped.

Whilst on the chemotherapy, I found that my entire body was aching and I'd lost quite a lot of muscle mass, which meant that my bones were sore when they came in contact with one another.  I really couldn't find a respite from this.  Then I remembered seeing a leaflet in my haematology clinic about a local charity that provided complimentary therapies for cancer patients (for free).  I phoned them and explained that I didn't have cancer per se but was happy to pay for an aromatherapy massage if they could arrange it.

As a fairly average guy,  asking about aromatherapy massage didn't sit comfortably with me at first.  I was embarrassed about the state of my body, as well as everything else.  However, the therapists who free-lanced for the charity (Circle of Comfort) were all used to treating very ill patients and the lady who came to our house (complete with her own table!) to see me was excellent.

I can't tell you just how good that first session felt.  After suffering for several weeks, I finally got my first decent night’s sleep and the boost to my morale lasted.  I organised a second session about 6 months later and tried a penetrating massage with hot stones.  Again, this soothed my aching muscles and left me feeling great.  I don't know if there is a similar charity in your area (I'm in Fife) but I'm sure that you'd be able to find a masseuse\r privately.

Outside of that,  my only other ‘pamper tip’ would be to get a Turkish hot shave! 

I was 47 when diagnosed but have, so far, made very good progress.  Along with everyone on this forum, my heart is with your husband, yourself and your family.  Good luck! 

Mark


Elliei21@me.com

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Re: Complementary Therapy
« Reply #5 on: February 25, 2015, 11:26:25 pm »
Hi Jan
Sorry to hear your husband is suffering so much with his present treatment. When I had my first chemotherapy regime CTD four years ago, I suffered with very similar symptoms to what your husband is experiencing and I found that reflexology really did help me to deal with the neuropathic pain and also helped to relief some of the most worst side effects from the chemo. I'm on a CVD treatment at present and I am being especially careful with my diet whilst on chemo ie no caffeine, no green tea not a lot of dairy and I am finding that I have few side effects on the velcade at the moment. I hope that the treatment is working and soon your husband will be relieved from the pain he's suffering now.
Take care and good luck
Ellie

Miriam Vered

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Re: Complementary Therapy
« Reply #6 on: February 27, 2015, 10:56:13 am »
This is an important discussion, as many patients with amyloidosis seek complementary therapies and these can help people to relax, to maintain a positive outlook and to cope with unpleasant symptoms, as you’ve all mentioned here.
But it is really, really important that complementary therapy doesn't cause you to delay seeing your doctors and nurses and discussing your symptoms with them. Delayed diagnosis and treatment of amyloidosis can adversely affect the chances of response to treatment.
(Although Ali, I understand from things you’ve said in your other posts, that it doesn’t sound like there’s anything you could have done differently that would have changed David’s outcome.)
Also, it's important to tell your local doctors or the NAC doctors and nurses about your symptoms during chemotherapy so they can make appropriate decisions about your ongoing care.
Some types of complementary therapy, such as Chinese medicines, may even contain actively harmful ingredients. Some should be avoided by patients taking chemotherapy, for example green tea may reduce the effectiveness of velcade and should be avoided by patients on this drug.
 
So if you’re considering trying any type of complementary therapy, please discuss it FIRST with your conventional doctors.
 

JellybabyJan

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  • Reason for joining: Husband Mike has AL Amyloidosis in Heart, Kidney's, Liver;Spleen and nervous system
  • Diagnosed: Apr 2013
Re: Complementary Therapy
« Reply #7 on: February 27, 2015, 06:51:23 pm »
Hi all

Thanks for your replys. I think that massages/reflexology would help him but it's getting him there! I will try though. At present he's suffering sleep apnea which is making our lives hell. He has a very large neck due to all the steroids he takes, Dexamethasone, Hydrocortisone and Fludrocortisone so can't really change that. He gasps for air, stops breathing, can't catch his breath all night. It is awful to listen to so we both suffer! We're having to watch his fluid intake and try sleeping at a 30 degree angle before seeing a sleep therapist.

Having amy in his autonomic nervous system causes so many problems. It controls your blood pressure, regulates your heart and other involuntary functions. This is completely damaged and dealing with this is so challenging. We having to use a wheelchair now as he can't walk far without getting totally exhausted. I try to stay positive but for 2 yrs it's been nothing but bad news afer bad news. When will we get a break?

Jan

Lesley

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Re: Complementary Therapy
« Reply #8 on: March 02, 2015, 11:47:22 am »
Agh this disease is just rotten. Whilst during chemo, my water retention went awful - I couldn't help thinking it was made worse by the steroids too. I was offered reflexology and I do know each time I had a session I was desperate for the loo after! The reflexologist explained this happened on most occasions.
Since my chemo and SCT, I was sent to the excellent Macmillan centre close by. They are absolute stars in the help they are giving me along with many other things, they offered me reflexology again - this time it was more my state of mind that needed sorting, however, I went along and have just never regretted that at all. Jackie my reflexologist, a trained specialist Nurse for 40 years, went into the Macmillan side and alternative therapies. For that hour I can forget Amyloid and all the other bad things that have happened in my life at the same time and its just me and Jackie and I do believe its offered me a prop along the way.

I think anything alternative, alongside your treatment regime, has to be good as long as it doesn't interfere with your main treatment.

Jan, I know you wouldn't have it any other way looking after your husband but I think you too would also benefit from something along these lines. Please do ask Macmillan as they do cover carers too as your role is just as important. Big hugs to you as yes, two years is awful and you do both need a break.

Lesley

Elliei21@me.com

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Re: Complementary Therapy
« Reply #9 on: March 02, 2015, 10:51:36 pm »
Hi Lesley,
It was interesting to read your complimentary therapy post, I  found  reflexology a help after treatment, at the moment I am on the third dose of CVD and I had bad fluid retention with my last treatment but upto now the swelling is not too bad, I'm hoping will stay that way for the whole of the duration of the treatment, I agree amyloidosis is a horrible illness but I just keep thinking that even though  the treatment is harsh, hopefully in most cases its is controlled and managed, I think we all have to be aware of our symptoms and in my own experience to tell the consultants all the symotoms we suffer so they can treat us asap. How long is it since your treatment and how are you feeling now ?
Regards ellie

Lesley

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Re: Complementary Therapy
« Reply #10 on: March 03, 2015, 10:17:03 am »
Hi Ellie

I started chemo Feb 2013 - this finished beginning of June 2013. I have to say I was rather surprised at the after effects when the treatment stopped. It took a good while for my body to settle down.  I then had my SCT in November 2013. Unfortunately I was in hospital for 3 months so came out 14th Feb 2014.
Because of the complications I had, its taken me a lot longer to get over SCT.
When I first went to the Dr, I had slight weakness in the legs and then Amy was diagnosed. I thought after the regime of chemo/SCT I would return to the normal Lesley and of course this hasn't been the case for me.
I do get frustrated at the limitations my body dictates but I do hold down a full time job so maybe if I could do as my body asked I may not feel quite as exhausted! I also worked all the way through chemo but not quite sure how!
I have to say the support from the NHS and all the medical team has been absolutely brilliant.

Lesley

Elliei21@me.com

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Re: Complementary Therapy
« Reply #11 on: March 03, 2015, 10:50:44 am »
Hi Lesley,
Thanks for your reply, you really have been through the mil chemo the a SCT, and after all that managing to work full time too you are unbelievable, as you said maybe we don't listen enough to our own bodies as I don't work anymore as my job was physical but do keep myself busy in other ways, I hope you go from strength to strength, you deserve to most definitely. Where do you live and which hospital where you treated at, I have gained a lot of confidence from your posts, thank you.
Elliex

Lesley

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Re: Complementary Therapy
« Reply #12 on: March 03, 2015, 03:13:26 pm »
Hi Ellie - that's kind of you thank you and I am glad you have gained strength from me too.

Out of all the awful things that have happened to me I know a lot of (Amy free) people have changed their outlook on life. The worst thing to happen in all honesty was losing my husband so soon after I was diagnosed.
I had the good fortune to have private medical cover at first and met a gentleman called Professor Yin. Lovely man - so strict, I felt like a school girl when in front of him but boy did he fight my corner with the drugs he wanted me on!  He then wanted me to go under the care of Dr Simon Gibbs (this was then on the NHS) - Simon had worked at the NAC and then moved to the MRI in Manchester, which is where I had my SCT. Simon left to go back to Australia I think in May of last year. Such a big loss to the MRI - and such a massive gain for Australia. However I have a lovely Dr Rocci now at the MRI and he is so lovely as is Pippa and Amy the care nurses. I also have Macmillan support and my GP is amazing. I owe my life to my GP. Please, if you ever feel you need to ask me anything, do so. Cant give you medical answers of course but can lend an ear when Amy bites - I find she has given me tourettes!
Lesley
x

Elliei21@me.com

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Re: Complementary Therapy
« Reply #13 on: March 03, 2015, 05:58:33 pm »
Hi Lesley,
Thanks for all the support, yes it does seem you have been in very good hands, my GP too is very good too we are very fortunate and I'm under a very good haematologist at arrowe park hospital on the Wirral, I also live in Cheshire, and was diagnosed by a private nephrologist who has since gone to Australia, I think we both share the fact we are amylodosis sufferers but we have a lot of similarities too I'm just praying at the moment that this treatment will give me a good clonal response unfortunately my father passed away when I had just had to come off my last treatment due to pnuemonia and that was hard to bear at such a difficult time in my own life so I can understand how hard it must of been for you to regain ur strength after the loss of your husband to fight the Amyloidosis too but thank God you have managed it and hope you can carry on the best you can, my husband always tells me we have to  make the most of a bad thing in our lives I think he's right.
Take care ellie

JellybabyJan

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  • Diagnosed: Apr 2013
Re: Complementary Therapy
« Reply #14 on: March 08, 2015, 08:19:42 pm »
Thanks Leslie,
I am due to speak to a counsellor tomorrow, hope this helps, never thought I would need this service but I'm really finding it hard to cope with the stress, worry etc. Since my last post Mike has now stopped the Pomalidomide as he wasn't tolerating it. It made him so ill, then he got a chest infection so Dr Wechelekar advised him to have a 2 week break. If he decides not to start it again there is only one option for him which is Cyclophosomide, which only has a 20% chance of working. So yet again another blow. He has just started to feel a bit better after 2 weeks of hell. Didn't really get off the settee, had chronic diahorreah, was breathless and was probably at his lowest.

We're hoping for a week or so of getting back to normal and dings things together before we decide what is the next step.

Thanks for listening.

Jan x