Tapering with new issues ongoing

[arvine]

Tapering while new issues

arvine profile image

arvine•

8 hours ago•1 Reply

well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see happen to him, my late husband, His STEPFATHER, passed from that disease in 1999, at any rate, he got thru the stem cell transpland, and did well until last May, when diagnosed with leukemia, was admitted to Princess Margaret in June, and the did get in remission by first part of July last summer,then was told, he would be a candidate for a bone marrow transplant, which he had, Oct 6 2022, which was going well, having checkups every 2 weeks after discharged, still on several med,s ofcourse, but just about 3 weeks ago, got another setback, was pretty shocking, as the regular bloodtest, showed some leukemia cells discovered again, so hard to accept, as was doing so well, next line of treatment, where he is right now IN PMH, getting immunotherapy, that is a treatment, a med by IV, whereby boosting his own immune cells, will attack the leukemia cells, and this treatment is in hospital for number of days, then if tolerated and working will continue at home with this treatment by IV. Sorry for long drawn out story, but although he remains positive, and I am fighting to do that too, however, losing some ground, nerves are fragile through this, and to add, I myself have had a 3 week episode of severe pain , back and front thigh. Had MRI done a week ago, showing disc extrusion and impingement on L2 nerve root, so painful! no painkillers are relieving pain, sometimes slight relief, have appts coming up now, see what needs, to be done, decompression, back surgeon, cortisone injection etc, so along with my mental worry about my son,s disease, which has to take priority, I find myself having some meltdowns, where mental pain, and physical pain causing me to cave ,, really feel like getting to end of my rope, but have to be strong for my son, and don,t want him to be worred about me, doesn,t need any stress right now, this has just been a venting session for me, so thank you for listening, and appreciate any words of encouragement, have to keep going on and be positive

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arvine profile image

arvine

FemaleCanada

[redruth123]

So much happening for you arvine. Wishing you all the best and thanks for sharing.

[Bridge31 in reply to redruth123]

Feeling for you , fingers crossed and sending hugs.

[powerwalk]

Arvine, you may remember my recent posts re MRI, etc re my low back pain, you kindly replied to one of them. I have been diagnosed, something similar but the L3 region. I am due surgery to remove the portion of disc that is on the nerve, hopefully in next couple of weeks. We did try nerve block but it didn't work but did help lower the pain for a bit. My leg is still numb in parts and I cannot lift my thigh. I really just want to urge you to be careful if you can, not to flare this up that you end up worse in the meantime until you get treatment. Definitely cutting my toenails brought on the big flare (I did not know that there was a disc problem at that stage, though I had had the MRI done) that I ended up I the A and E. I know what you mean, it's hard to find pain relief but a steroid injection might help. There's different treatments, I think mine just went too far and is a bit weird the way the disc came out, at a funny angle or something. Ice packs help, temporarily. Hopefully you will not be waiting too long to be seen, now you have your MRI results. Let us know how you get on. You have a lot on. Best wishes.

[arvine in reply to powerwalk]

thank you, I have decided to do the decompression therapy, not into back surgery unless very last resort,

[arvine in reply to arvine]

and to add, seems no painkillers of any kind relieve this nerve pain, did they give you anything for pain, I am at 9 mgs of pred right now, and been on pred since Oct 2016

[powerwalk in reply to arvine]

During the screaming episode, it was a lot of stuff including morphine. The nerve block helped so thats really what calmed it a bit, but that was later. Before that nothing was working. Im hoping to hold it with Tramadol which i never take and what i found during bad episodes some vallium, from hospital and gp. But ive been trying to not use these unless i get to the bad state. You're right nothing works unless its really strong and even then its not much. Nerve pain is very hard to get to. Ive had ice packs going all day.

[Jackoh]

Hi Arvine.

You have such a lot going on and my heart goes out to you. It must be very worrying about your son and now your own problems on top of the concern for your son. You have managed so well Arvine and I applaud you 👏👏👏👏Just continue taking one day at a time and trying to pace yourself. You will get through this very difficult phase of your life, just hang in there. Will be praying for you. Sending a virtual hug. Love Jackie xx💐

[arvine in reply to Jackoh]

thanks so much

[Francesbarbara]

I always think it is cathartic to write things down and you have lots of friends here who will be so very sorry to hear what you are going through. Thinking about you and hoping for better news soon.

[arvine in reply to Francesbarbara]

thank you

[herdysheep]

🤗

[Pixix]

Truly sorry for you. My brother had MM. He had chemo every Friday for a year. Then he had stem cell treatment, which seemed to work, but he was only in remission for about 8 weeks. He lived in Australia. He had asthma since a young baby…& when he caught a lung infection, he just couldn’t fight it & passed away. It’s a tough disease to deal with. Hope things 8mprove for you, S x

[Viveka]

So sorry to hear about your son's health problems. It is such a challenging journey with its ups and downs. I have two friends going through the same type of things. Sorry you are in pain and understandably feeling stressed. Wishing you well and sending you love. You know inside you have great strength. We are always here for you. X

[arvine in reply to Viveka]

thank you so much, admit neves wearing thin , meltdowns here and there, I just want this therapy they are giving my son will work, my pain is severe , but he is my priority, know I have to look after myself too, don,t want him to be stressed out about my condition right now, I have gone for consultation to a decompression clinic, and think ive made a decision to go for that treatment,non invasive, and they can target the problem disc, nerve, dont want surgery if can be avoided at my age,

[arvine in reply to Viveka]

thank you, I was able to help him back in 2018 after stem cell transplant, but now feeling very helpless, not a good feeling when comes to helping out your children, no matter the age

[nallufl24]

I am so sorry you are going through all of this. I couldn’t imagine how you deal with this awful illness plus your son. My daughter had leukemia as an 18 year old. She survived and I thank God every day. However, I was healthy then and was able to devote all my attention to her. I truly feel for you

[arvine in reply to nallufl24]

thank you so much

[Joseph14612]

😢 So sorry...life can be so hard....those on this forum know it all too well. Thank the Lord every morning and petition Him for help with thanksgiving... my heart goes out to you dear.🙏

[arvine in reply to Joseph14612]

thank you for you kind words

[Sharitone]

So sorry you are having to fight battles on all fronts. there's nothing more worrying than the problems of a son or daughter. Will certainly keep both of you in mind and prayers.❤️

[arvine in reply to Sharitone]

thank you

[PMRCanada]

How awful for you to be dealing with the mental toll of witnessing and trying to support your son while also suffering from ongoing physical pain. No wonder you feel like you’re going to “cave”. We are always here if you need to vent….you’ve got plenty reason to do so.

[Whippetygirl]

Thinking of you, please take care and try and look after yourself take a few moments sit in the garden and take a few deep breaths and try and relax.