I just received MM diagnosis and will start chemo next week. Found out by accident. Still feel totally fine. May I ask how sick do you feel with chemotherapy? Will I need somebody to the hospital with me?
Hi julieSG. Kevin here. A. K. A. Vespa I have. MM. and now 8 months post stem cell transplant. My first course of treatment was. DVTD Which was all as an outpatient with a combination of injections and tablets. Not all chemotherapy based this was 4 cycles of 28 days then the stem cell harvest. With blood tests every week so possibly 3 visits to hospital per week some treatments only lasted 5 minutes! The body conditioning chemotherapy came post harvest but just before the transplant if using your own stem cells. Nothing about this was painful. But the chemotherapy and stem cell transplant meant 10 days in hospital! And a slow recovery. During my cycle of treatments life was normal. I drove myself to my appointments It was the fatigue and some neuropathy pain from the side effects. Other people will I am sure respond to you also. Just ask us but get a plan from your team and some great advice literature from Macmillan. Best wishes. Kevin
Hi Julie SG , Sue here . Like Kevin I too have MM and had Dara VTD treatment and a Stem Cell Transplant April 2023.
Followed very similar routine as Kevin only blood tests monthly unless needing an extra check . Like you I felt well but only today after a really lively walk realised how well I feel now . And remain in remission.
I wish you well x I hope you find as I did that once you get the first couple of treatments under your belt trust builds and familiarity kicks in .Everyone is individual and has different responses to the initial treatment. My advice would be just see how you go with the treatment .but for the first couple of times take someone with you just for moral support and to drive if you don't feel to good . We had a 45 min drive to the hospital and back again in rush hour traffic and all I could do was sleep on the way home so didn't feel good to drive .After the first month I was able to do the second injection of the week at home which took the pressure of trips to the hospital. You may feel like you have a hospital pharmacy at home ! My hubby made a spread sheet to help me get used to all the take home meds.
I was in frequent contact with my specialist nurse who always gave me reassuring advice .Please, if are not sure about anything it's better to speak to someone about it .The team will take very good care of you every step of the way. Plus there is always someone on this sight who will prob have been where you are now .Keep intouch and let us know how you get on xx
"May I ask how sick do you feel with chemotherapy?"
There is no simple answer to this. Chemo side effects vary so much from one person to another, even for people who are taking exactly the same chemo.
The most common side effect, I understand, is fatigue.
You will be given some medicines on an 'in case' basis. Practices vary a bit, but for example you might be given something to help with constipation in case you get it.
As you are new to this, some jargon. Chemo drugs are often abbreviated when talking about treatment and have different names, such as:
V = Velcade = Bortezomib
R = Revlimid = Lenalidomide
D = Dara = Darzalex = Datatumumab
T = Thalidomide
d = dexamethasone.
The standard treatment would be some of the above - possibly plus others. Some are tablets that can be taken at home. Some are injections that have to be given to you in hospital.
After a few months during which most of your myeloma cells get killed off, you would probably have a stem cell transplant (SCT). "Probably" because some people are too frail or have a medical condition that makes this impractical.
For an SCT, you go into hospital for some hours while your stem cells are taken out of your blood. They are cleaned up and then days/weeks later put back into you after you are given a massive chemo dose. The latter requires you to be back in hospital for a few weeks. This is the time when you are likely to be most 'sick', but you get through it.
You then go back on the prevuous chemo, typically for a couple of months.
"Will I need somebody to the hospital with me?"
I suggest that going with someone is helpful for the first chemo session or two. That is partly in case of side effects. It is at least as much for moral support. Dealing with myeloma is a matter of mental health as well as physical health.
Going with someone could also help in terms of absorbing all the information that you may be getting. Also someone who can ask questions.
I hope that this is some help. Please ask us more questions. It is one of the purposes of this forum!
Chicken2 (currently in remission after having chemo without an SCT)
