[loubellaParticipant]

My husband is scheduled to have his STC at Addenbrookes in Cambridge in February. He has been given 3 options for how the process is carried out, firstly, staying on the ward but in his own room. We seem to be being steered away from this as it is potentially noisy, difficult to sleep and more risk of infection (although this seems to be pretty high with any of the alternatives as well), the second is an on site apartment consisting of bedroom, 2 single beds and en-suite plus shared kitchen and lounge which could be shared with one other person having same treatment. I would be able to stay with him some or all of the time. The third option is to live mainly at home and just go in for the treatments and to be checked.The issue with this is that we live 30 minutes away from Cambridge and I don’t drive so the team consider it too risky in case he needs to be admitted quickly due to an infection.
The other complication is that we run our own business and have pets at home so would not be able to live in the on site apartment for the whole 3 week process but I also don’t want him to be on his own. We are really struggling to know what to do for the best. I wondered if anyone has been given these options and how the treatment panned out from a practical point of view?

[sj2909Participant]

Hi. Could you clarify what STC is please. Are you referring to stem cell transplant? I had two and for both was placed in a room of my own. I found it very isolating but certainly not noisy as it is separate from the ward. We were initially put up in a flat but I felt too sick so they brought me into the hospital early. It’s a long time to stay on your own but it is also reassuring to be close to medical care. Perhaps you could ask about a split between the flat and the hospital but if the flat is close to the hospital it will definitely be nicer than a ward room. Not sure if this helps.

[AdrianAParticipant]

Hi Loubella,
I had my first SCT in 2013 as a in-patient at Addenbrooke’s, I was in hospital for 19 days. In 2018 I had my second SCT and was the first ambulatory patient to go through the process. .
All the actual HDC and transplant treatment took place in the day unit which is a 2 minute walk from the flat, the rest of the time was in the flat and surrounding areas. For me, the flat was great, a freedom to do what I wanted when I wanted. I even went for walks in the local area.
I became neutropenic on day 5 and was admitted to the ward when I spiked a temperature. I was given all the infection control meds and monitored until, on day 9 I registered a neutrophil count of 0.5. At this point I was discharged home.
I understand you can’t stay with your husband all the time so he may pine for you terribly, but in my opinion the ambulatory route is a shorter, more comfortable experience, giving the patient the chance to retain at least a semblance of normality.
I hope this is helpful and good luck whichever route you choose.

[loubellaParticipant]

Thank you very much for your reply Adrian, it is very helpful to hear from someone who went through the process at Addenbrookes. My husband has had excellent care from the Myeloma team and an excellent result from the induction treatment but does feel as if he has been pushed down the route of SCT without alternatives being fully explained. The consultant said in one of the meetings that in the near future with the rapid development of new drugs, the SCT will become redundant. He has an appointment tomorrow for liver function tests and then we have a meeting with the consultant this week. Quite a lot of questions to ask and will them make the decision about whether he proceeds and then how we handle the treatment process if it goes ahead. Thanks again for your input.

[loubellaParticipant]

Thank you SJ2909. Yes indeed SCT,Sorry for typo. Thanks for your reply, all information is helpful. The flat is on site so may be an option and if he becomes ill he could be moved on to the ward. I do get the impression that the care can be a mixture of in the private accomodation and on the ward so we will see after our meeting this week. Thanks again for your advice.

[rabbitParticipant]

Hi Loubella,

You say that it “… does feel as if he has been pushed down the route of SCT without alternatives being fully explained.”

Not everyone has an SCT. I didn’t, as I have a dodgy heart.

Also, my consultant told me that although remission tends to be longer with an SCT than without, the overall prognosis (to be blunt, life expectancy) is similar. You could mention the DETERMINATION clinical study to your consultant.

[loubellaParticipant]

Thanks Rabbit, my husband and I have read your previous posts so have an idea of your journey. I think that because he does not have any physical indicators to prevent the transplant they can’t seem to understand why he may not want to go down that route.I did read some American studies where the focus as you suggest on longevity rather than length of first remission but at Addenbrookes the focus seems to be on getting the longest remission time possible out of the first treatment and they feel that any risks from the HDT and massively impacted immune section are outweighed by the proven benefits. He is still in 2 minds about it.

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