[terrysParticipant]

Good evening trishanny,

Glad to hear all is going well for your husband. My treatment experience with Elranatamab seems to be going well so far,after the initial stages, I have described in a previous post. I continue to get on reasonably ok with my normal life. The weekly visits to the hospital for my treatment are not a particular problem and I feel very lucky to be able to receive this treatment. The only side effect that I have currently is that my immunity levels are low. Consequently I have had 2 Covid sessions and I currently have a cold, caught from my lovely granddaughter! It means that I continue to wear a mask when I’m out and about with lots of people around, such as shopping etc. I’m still on strong antibiotics and have received a couple of injections which boost the white blood cells and Neutrophils. Other than that I feel fine.

I hope all goes well for your husband and everyone else who is receiving Elranatamab.
Best wishes,
Terry

[terrysParticipant]

Good evening,
My apologies Dave for not answering your query about the effectiveness of my treatment. I wanted to wait until I had had my appointment, with my Consultant, to review my progress so far. I was extremely pleased to hear that my paraproteins are dropping and I’m doing very well so far. My WBCs and Neutrophils are low at the moment, but apparently that’s very common with Elranatamab. So everything’s looking good.

I hope your treatment is going well.

Best wishes,
Terry

[terrysParticipant]

Good evening Dave and Penny,

I have just received my 10th treatment of Elranatamab. I have been very interested in reading about your experiences on this new treatment. I spent 2 weeks in hospital at the start of the treatment and received the first 3 doses there. I experienced a CRS episode after the first dose, but it was dealt with very promptly. The other 2 doses were fine. I also had daily memory tests but there was no evidence of any neurotoxicity. I was discharged with Covid, but luckily I was given anti-viral treatment and felt fine after about a week. I have my treatment once a week and have a blood test too. So far so good! I feel very lucky to be able to have the treatment.

Best wishes,
Terry

[terrysParticipant]

Hi Biffboff,

Yes, it would be completely ok to mention the possibility of MM to your GP. Unfortunately, late diagnosis of MM remains a great challenge. If it’s not MM then at least it’s been ruled out. If it is MM then treatment could be started asp!
Good luck with getting some answers.
Terry

[terrysParticipant]

Hi Alanr,

I do apologise, but my reply concerning breathlessness and Angina, appears in the side effects section.
I hope you are able to find it !
Best wishes,
Terry

[terrysParticipant]

Hi Cath. I recently had my third bone marrow biopsy and it continues to be a very challenging experience for me. I am reasonably competent with the gas and air but this is not the answer. I understand how important the achieved results are and how they inform diagnosis. However, surely there is a more patient friendly procedure.
Best wishes,
Terry

[terrysParticipant]

Hi Caroline,
I was diagnosed in November 2018. I had my SCT a year later. Despite a good response I relapsed a year later. Obviously I was extremely disappointed. My next line of treatment was Daratumumab. Unfortunately I relapsed within 6 months. My current treatment is Lenalidomide. I have completed 17 cycles and have felt very well. However, following a recent blood test, the paraproteins are increasing very slowly. Consequently my Consultant and I have been discussing next steps, including accessing a trial.
I’m very interested in hearing how your husband gets on this week at the meeting in London. I do hope all goes well for him and he gets some positive news. Good luck !
Best wishes,
Terry

[terrysParticipant]

Hi Lili,
My experience of my SCT in November 2019 was very similar to Mulberry’s. There was no mention of an NG tube. I was provided with ice and I did not have any mouth problems following the Melphalan infusion. However I did have attacks of diarrhoea and nausea. The Staff made me soup and I also enjoyed ice cream during this time when my appetite was suppressed. I also enjoyed mushy weetabix for breakfast!! I agree with Mulberry that it’s worth your husband having the conversation with his team about how he feels about Ng tubes.
Best wishes,
Terry

[terrysParticipant]

Hi Poco Loco,
I have been having Zometa infusions for over a year now. I also had the treatment 2 years ago prior to my Stem Cell Transplant. Luckily I have never experienced any side effects. It might be that you are experiencing some side effects from other myeloma medications you are currently taking. It never ceases to surprise how side effects can suddenly appear when you been been on a particular medication for several months without any problems. It might be worth mentioning what happened when you go for your next Zometa infusion, then your medical team can monitor any reactions.
I hope all goes well for you.
Terry

[terrysParticipant]

Hi Samella, welcome to the Forum. Since my diagnosis I have found the support and information so valuable. It has helped me to remain positive and develop an understanding of myeloma, which has been great and supported me through the challenging times I sometimes have experienced. I hope you find the Forum as beneficial as I have.
Best wishes,
Terry S

[terrysParticipant]

Hi Karl,
I had my SCT last November. I had extremely good care and have made a good recovery. I have been reading everyone’s accounts with great interest. I was in hospital for just under 3 weeks and shared many of the experiences that folks have been describing. One thing that I found very beneficial to my well-being during my stay in hospital was to get out of bed every day, have a shower and change out of my PJs for the day. Even on the more challenging days when I might just sit in the chair by my bed, I followed this routine. I’m sure it helped me to remain positive.
I wish you all the best for your SCT.
Terry

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