Tagged: DVTD
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I am newly diagnosed with MM having been smouldering for 5 months, and am about to start DVTD and SCT. I have read loads including excellent material on this site. Taking the initial 4 cycle DVTD treatment, it would be great if anyone can share “what they wished they had known before they started”, or tips, things to make it easier and so on. I am confused about immunity and the balance between being safe and trying to live a “normal” life and dont seem to be able to find clear advice. I will of course talk to my consultant when I see him again before treatment (St Luke’s at the Royal Surrey in Guildford have been excellent, faultless), but views from people who have been through this are invaluable, Many thanks Nick
Hi Nick. I completed my 4 months of DVTD in February and am going into Freeman Hospital on Tuesday for my transplant. I can only tell you my own experience but I guess the drugs will have different effects on different people, but the thing I wish I’d known was to start taking laxatives from day 1! They warn you that “bowel disturbances” are one of the side effects but it can go either way. They gave me laxatives (DulcoEase) and said take them as you need them. I made the mistake of waiting until I needed them. By the Sunday I was severely constipated and a friend had to go and get me suppositories! (Too much info but this became one of my topics of conversation!) I found a good balance after that, taking laxatives every day throughout the treatment (DulcoEase are gentle and good for long term use) and upping and reducing the dose as required.
On the whole I didn’t find the four months too bad. I got into a pattern of feeling OK on Friday (chemo day) and Saturday, because they will give you the Dex steroids on those days. By Sunday starting to feel a bit more tired and Monday was the day when I felt I had no energy or motivation. But then I picked up and was even doing my usual Wednesday Zumba class, albeit with less attack than previously. Which leads me onto immunity. I continued to go to the gym (although less often), to church every Sunday where I play in the band, to cafes and restaurants to meet friends and even to theatre concerts. At no point since I started treatment did any of my blood counts that affect immunity go below the range, although some did go down, and at no point did I catch even a cold. The haematology team were happy for me to continue doing normal activities so long as I had the energy. I think it will depend how it affects you and what happens to your blood counts.
The main “blip” in my journey was that in January / February I suffered from severe anxiety / depression for 2 to 3 weeks. It came on suddenly and the anxiety was extreme and a bit irrational. My consultant thought that it was probably caused by the Dexamethasone, but most of the drugs say they can cause anxiety and depression. I have never suffered from this before or taken medication but I did resort to seeing my GP and starting anxiety / depression medication, which is the best thing I could have done because I feel absolutely fine now. So I would say don’t resist doing this if you feel you need it. Once I’m through the other side I will come off it.
I hope that helps. All the best with your treatment. Glennis
Hi Nick,
Side Effects
The side effects of the chemo vary enormously from one person to another. Therefore it is difficult/impossible to say how it will be for you.
Having said that, I will mention a few common side effects and related tips.
1. Fatigue and sleeplessness.
Dexamethasone can have many “interesting” side effects, but one of the biggest is that it can mess up sleeping patterns. I only read recently that “Dexy’s Midnight Runners” got their name from taking dexamethasone to party at midnight!
At the same time, fatigue is normal. If you need a daytime nap, go right ahead.
2. Weight
The chemo can cause loss of appetite and nausea. Somewhere on this forum, one or two people mention that rice pudding, custard and yoghurt go down well. I independently discovered that too.
Dexamethasone can also increase appetite (in the short term).
Don’t worry about your weight (unless you are losing a lot – you can be prescribed high calorie drinks).
Now that I am in remission, I often have ‘hunger attacks’ my body just decides that it needs an extra meal to put weight back on).
Take Control
It’s great that you have been reading up. Apart from anything else, doctors are not gods.
A couple of personal examples:
MM leaches calcium out of the bones, which can cause fractures. To prevent that, treatment normally includes a bone strengthening drug such as Zometa. My consultant simply forgot to start giving me Zometa – I had to remind him!
I felt that my eyesight was deteriorating. My consultant either didn’t believe me or thought that was nothing to do with MM. I saw an opthalmologist: the chemo had damaged my eyesight (to be fair, this is unusual). I have had surgery and now my eyesight is the best that it has ever been!
Family and friends
If you have them and they live close by, this is a time when help from loved ones makes all the difference. At my worst, I was struggling to do much, such as household chores. Family in particular made all the difference.
At the same time, and I don’t understand this, I lost friends. Whether people don’t know what to say, or it is a primeval fear of disease, at the first mention of cancer some people just didn’t want any more to do with me. This is a time when you find out who you can rely on.
Regards
Rabbit
Thank you so much for these thoughts. What I have bought myself is a single page type diary to record drugs, hospital visits how I am feeling but also the non MM related things I am doing and perhaps plan for. In some ways the hard bit is coming to an end . The journey is beginning and I still need to get my head around the emotional side of this, but feel I can now. Thank you again
Myloma UK do a diary that is quite good for recording the details you mentioned above.
Wow! Yes, they certainly do! I think I will use the diaries I have got for a higher level and recording feelings plus family life and so on.
Thank you
@rabbit
I was very interested reading your reply about your eyesight as I have also been struggling with mine.
What symptoms did you have please?
Thinking I might need my eyes checked too.
Hi Squirrel,
In March 2023, I had a routine eye test. The optician found that I had early signs of cataracts. Routine for someone like me, in my 50s, so it didn’t seem anything to do with MM (my treatment started January 2023). Therefore it was just something to monitor for the long term.
By October 2023, my vision had become noticeably blurred in both eyes. It seemed to have come on suddenly*. I frankly panicked: it was bad enough having high risk MM without one of my senses getting dramatically worse. I was seriously worried about going blind. My consultant referred me to a private opthalmologist specialising in cancer cases (cost £300 for the consultation). She diagnosed that the dexamethasone had made the cataracts far worse.
*The opthalmologist explained that my brain had been compensating for the deteriorating vision until it all became too much for my brain.
Now that I knew that the medical situation was relatively routine, even though the cause was not, I calmed down and had cataract operations. There was the complication that I needed infusions of platelets just before the ops, but it was all straightforward other than that. In the process, my shortsightedness has been corrected: I no longer wear specs!
Regards
Rabbit
Hi All
Really helpful stuff.
I’m currently on week 11 of my 12 week induction chemo.
Interesting reading about your eye deterioration. I was diagnosed with Sjogren’s Syndrome in 2007 and dry eyes is a part of that I’m finding that the chemo is making my eyes drier and slightly more blurry but am just using my Theoloz Duo eye drops more often. I have an eye test booked for a couple of weeks so it will be interesting to see if they pick up on anything. I was on Hydroxychloroquin for many years and had regualar check ups with the opthalmologist at Torbay but sadly no longer, due to funding, so I’ve weened myself off it.
I have opted out of attending church and singing in South Devon Choir just as a precautionary measure. Although I still do shopping and go meet up with friends for coffee.
My chemo is on a Wednesday and Wednesday night after the Dexamethasone I am zinging and get no sleep. Weirdly I am able to relax and feel rested but because of the Sjogren’s I haven’t been able to work for a number of years. Brain fog and fatigue are a major component so this is something I haven’t had to adapt.
I do get really red and burning cheeks on days 1 and 2 after chemo. But again this happens with Sjogren’s particularly whilst singing or when I’m nervous. My hands are ice cold which is helpful in calming it down and as that’s the only side effect I’ve noticed I think I’ve got away very lighlty.
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