[trishanannyParticipant]

Just a quick update on my husbands treatment.
He is continuing weekly and is coping better each week. No trace of paraproteins and so different from previous treatments when it reduced slowly.
Despite the weather he has tried to walk every day and building up his stamina. Still quite fatigued at times but finds he improves as week goes on.
All blood results good , white cells etc. He gets IGG every 4 weeks and Nivestim once weekly.
Hope all on this treatment are doing as well as my husband. We can even now consider a holiday and will ask the consultant next week if this is possible as we would have to miss a week.
Best wishes to all.

[trishanannyParticipant]

Thank you Pennylaws and great to hear you are coping well with Elran and doing its job.

My husband has no other issues except the fatigue . His haemoglobin , white cells etc all normal readings. At times he has little appetite but to keep up his iron etc he does take three good meals a day.

I’ll keep you posted if the fatigue eases. But this is a small price to pay for a treatment that works .

Regards

Trisha

[trishanannyParticipant]

Well we got terrific news yesterday. No trace of paraproteins. Amazing result after such a short time on this new treatment.

My husband coping well with the fatigue, making sure he walks every day and being as active as he can be.

So after the initial ups and downs with Elran, he’s now in a very good place. Treatment will continue weekly from here on.

In posting this I trust it gives all who are getting this treatment great hope that it’ll be the same result for them.

Wishing all a very peaceful and joyful Christmas.

[trishanannyParticipant]

Thank you davepr. Treatment given today and consultant happy with bloods . Protein level not back but happy to wait until next week in view of significant drop last week. So hoping for more good news then.
The fatigue discussed and seems it’s not a common side effect with this treatment. From his diagnosis 7 years ago he has suffered tiredness but not on this level. Previous to this treatment he was walking daily with no problems. Plus pottering in our garden.
However apart from this, the important thing is treatment working. And eating really well.
So taking your advice and consultant advised the same, a little every day and build energy up again.
Hope you are all keeping well and treatment doing the job for you too.

[trishanannyParticipant]

My husband restarted his treatment on Friday after a few weeks off it, due to being sick and nil appetite causing significant weight loss. Along with this he has been very fatigued and spending a lot of time in bed sleeping.

However on Friday it was great to hear that his para proteins had reduced from high teens down to 4 and seemed to have stayed low while off the treatment.
So now 3 days later he seems to have no after effects of Fridays treatment.
The only downsides he seems to have are:

1) Extreme tiredness and weakness
2) Reduced appetite
3) Dry peeling skin on hands and feet. Given Dermol 500 lotion to treat this
4) white cells reduced but now on Nivestim injection weekly and continues to get monthly IGG.
5) anti sickness tabs twice daily to stop nausea and sickness

We are obviously delighted with the reduction in proteins . My husband doesn’t complain about the tiredness and believes he’ll get his strength back as time goes on and gets used to Elran. He has been house bound more or less since starting the treatment and not inclined to drive as yet.

Has anyone any thoughts on the weakness/tiredness or given supplements to help this?

Thank you.

[trishanannyParticipant]

Hi again. Just a quick update. My husband got his 2nd dose of chemo on Monday and has had no bad reactions at all. Apart from the usual tiredness. The consultant said his bloods were all showing good and planning his next 3rd chemo on Friday.Its good to see no side effects this time as results from other patients seem positive and obviously hearing this, he’s keen for the treatment to continue. All going well , he should be home next Monday. This allows for any reaction to be treated in hospital.Ill update after Friday. Hope all well and thank you again for sharing your own journeys.

[trishanannyParticipant]

Thanks Davepr. And brilliant news on the paraproteins dropping so significantly!!
It’s so reassuring to hear that my husband’s symptoms are not unique otherwise I would be thinking he wasn’t going to be able to tolerate. I can fully appreciate now why this has to carried out in hospital for closely monitoring these reactions and treating appropriately.
Since his first chem jab on Tuesday he has suffered bouts of high temperature , back pain and shivering. Slight platelet drop. Last night again he was closely monitored and had an ECG. But this morning he’s well settled again. All positive news. The plan now is to get the 2nd jab Monday.
He has been on immunoglobulin monthly since having pnemonia twice. He did have bad reactions at the start but they slowed the administering of it and seemed to do the trick. Tiredness afterwards for a day or two.
I’ll update as treatment continues.
Wishing you all well on this journey.

[trishanannyParticipant]

Davepr This evening my husband had the same episode as you had after first dose yesterday. Shivering and generally unwell. He had the drips, possibly ones you mentioned and certainly feels a lot better now. Sleepy only. He’s going to have chest X-ray to check lungs clear. How is your treatment going now? Thank you Terry , Penny and Dave. All your posts have clarified the process for me and with this knowledge I feel I’m able to support from a more informed manner.

[trishanannyParticipant]

Thank you. I’ll continue to follow this link. I’m feeling this treatment is a god send in the myeloma journey and so far I’ve heard mostly positive results from the consultants. Hoping my husband can tolerate any side effects. Only 2nd day but all seems good.

[trishanannyParticipant]

Hi and thank you for these updates on all your journeys with elran.
My husband started his today and we’re trusting that it will do the job on knocking those paraproteins.
Would this be seen after the completion of cycle 1 or earlier? I’ll update on his progress as time goes on.

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