[kh0305Moderator]

Hi Rosary
Thank you for posting this. So far my dad has still been receiving Revlimid with no mention of a change, though having said that it wouldn’t be the first time he’s had a change of meds arrive with no prior warning given!
We will keep an eye out in case of any changes. Good to hear Mulberry that you’ve not experienced any difference in side effects on the generic version though.

I’m not sure where patients stand regarding rights. My guess is that if the drug is in effect the same, then there is little comeback but if you do find out more regarding this, would be interested to hear more.
Thanks xx

[kh0305Moderator]

Happy New Year Nick!
Thank you so much for sharing your story. As you mention, there are often queries on here about the SCT process and experience as it is understandably an unknown and worrying time, so having your story here is so helpful to those who have SCT coming up or are trying to make the decision as to whether or not to have SCT xx

[kh0305Moderator]

Hi Mariposa,
Happy Birthday!!
Sorry to hear about your back pain. It may be completely unrelated to MM, but it is definitely worth speaking to your medical team and getting it checked out. My dad was diagnosed in 2013 and following SCT went into remission until the end of 2020 when he began suffering back & hip pain and sadly it was the MM ‘returning’. Hoping it isn’t the case for you and it is something else entirely given you had the all clear just last month so try not to worry until you have any results/conversations and in the meantime enjoy your lovely Lanzarote trip. Keep us posted xx

[kh0305Moderator]

Hi SuzieP
Welcome to the forum. As Tony says, you are most welcome here. We are here to help wherever we can. Have you heard any more from your GP? I’d definitely push for more information if you haven’t already received it (I’ve found along the way, particularly post-covid that sometimes info sharing from my dad’s medical team has been, shall we say, overlooked!). Hopefully all the information will be positive, but it would be good for you to get some clarity on why the kappa light chains/ratio are slightly high.
Keeping everything crossed for you and keep us posted xx

[kh0305Moderator]

Hi Emma,
Happy New Year!
Thanks for keeping us updated and though not the best news, pleased to hear it is MGUS and hope it stays that way for a long time to come!xx

[kh0305Moderator]

Hi Ethan,
Happy New Year and welcome! Sorry to hear of your diagnosis and subsequent COVID infection but glad to hear you are feeling better.
My dad was diagnosed with MM back in 2013 and, much like you, had no doubt been living with it for a long while as the various trips to the doctors for his pains were put down to his job so it took pneumonia before they looked into it further. Anyway he is still with us and on third line treatment now after relapsing at the end of 2020 and the 2nd line not working for him. He is now plateauing and they are pleased with his progress. He is on IRd. Your age will definitely stand you in good stead to get through and back to a fairly normal life again and as ready mentioned, it is a very treatable disease.
I hope your wife is feeling more comfortable with the diagnosis. It is hard to hear the dreaded C word for the ones you love and the way I dealt with it was just researching it like crazy and asking as many questions of the medical team as I could (I took a lot of notes!). The forum and peer buddy service are also great sources of support for both patients and carers if she is still struggling she might find some helpful information/conversations.
All the best for the treatment and hope you’re over the COVID soon xx

[kh0305Moderator]

Hi Lottie,
Hope all is going well so far. Thinking of you and sending best wishes for the process. Dad didn’t have a Hickman line, so I hope it has gone ok for you and not too uncomfortable. Good luck with everything xx

[kh0305Moderator]

Hi Peter,
My dad has MM and was diagnosed back in 2013 and is currently on his third line treatment. He’s not had the same combinations that you have had, but he was in a similar situation to you with DVd where he reacted badly to it from a side effects perspective so it was curtailed and he was then put on IRd which he has had fewer side effects from and is able to live a more normal life than when he was on Dvd and it is proving to be more effective against the MM. I hope that it is the same case for you xx

[kh0305Moderator]

Hi Emma
Sorry to hear you’ve been left waiting and I hope you’ve managed to get some results through. We had results through reasonably quickly when they did finally figure it out when dad was initially diagnosed back in 2013 but I have to say since covid we’ve found things much slower and longer waits and less communication.
Definitely keep chasing and pushing. I hope you get some news soon and it isn’t MM xx

[kh0305Moderator]

Hi zumbafever,
We haven’t experienced indigestion issues but dad had had chronic GI issues which we flagged to his MM team and they adjusted his medications to help and prescribed other drugs to help control it. Have your team been able to offer any advice or medications to help at all? xx

[kh0305Moderator]

Hi Graham,
Sorry to hear of your diagnosis. It is always a shock to hear the C word, especially when it is such an unfamiliar one and you’re not sure what is happening. Dad was diagnosed back in 2013 with MM and it was a huge shock but he’s still with us and after his SCT in 2013 had 7 years of living a normal life before relapsing at the end of 2020. There are lots of ups and downs and the treatments can give you side effects but on the whole they aren’t too bad and remember they are for the most part temporary. Even going through treatment at the moment, Dad has been away on several breaks and though not 100% is able to do everything he wants and his bloods are heading in the right direction.
I found writing questions down as they came into my head to ask at consultations was very helpful, as was jotting down all the information they gave us as it can be very confusing at first with lots of new terms and drug names to absorb! Also, don’t be afraid to ask your medical team as many questions as you need. We found dads team to be super helpful and reassuring. xx

[kh0305Moderator]

Hi Tearose
When dad was first diagnosed back in 2013 we had excellent support from the NHS which continued right through to his relapse in 2020. However things have been a bit up and down since covid hit – I don’t know if that is due to staff shortages/understaffing or a different hospital (although the consultant is the same) but it hasn’t been as good this time round. Saying that, we still get the treatments needed and are now getting more regular consultations. We have been offered drug trials before too.
Good luck with he move and best wishes to your husband and grandson xx

[kh0305Moderator]

Hi Lottie,
Sorry to hear you have had such a stressful time but I hope all goes well for a SCT in January after all of this waiting – keeping everything crossed for you xx

[kh0305Moderator]

Hi Jolly Northerner
Know exactly how you feel!
We were told dad had another 3 cycles of his chemo left… fast forward two consultant appointments and our usual consultant and a different story. Oh you shouldn’t have been on a dose that high so long…
Well, how do we know that?!
We have also had meds arrive with new dosages that wewerent told about and dads been sent home without bloods being taken even though he challenged it. It is frustrating, as like you I am very detail oriented, but we have got used to it and now just keep an eye on it and challenge/ask questions. Shouldn’t be that way though! xx

[kh0305Moderator]

Hope you aren’t feeling too bad and that you recover quickly xx

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