[richfsModerator]

Hi Tommac,

Sorry to hear of your recent diagnosis of myeloma. It sounds like they’re starting your treatment quickly which probably feels like as much of a shock as the diagnosis itself, things tend to move along at quite a pace. However, it’s defiantly a good thing to start the treatment as soon as possible, so this is a good thing.

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

You’ve done well to write on the forum, thank you for your openness. No-one wants to join this ‘club’, but we are here for you and happy to discuss our experience of living with myeloma and coping with its symptoms and the treatment.

When I was diagnosed, it felt like the end of everything (I was also in a lot of pain due to damage to my ribs and vertebrae), I wish I’d read more stories of people living well with myeloma, and picked up that when it comes to myeloma, ‘treatable’, is a more significant word than, ‘incurable’.

I’m sure your positive attitude will help you through the next few months of treatment. I’ve always thought that even if it doesn’t help beat the disease, at least you feel better when you’re smiling!

Last Saturday marked 3 years to the day since I was diagnosed (at 44-years old), and whilst I am in relapse and may need further treatment this year, I’ve lived a good and active life for the last 2½ years (I won’t say ‘normal’ as Covid got in the way of that!) and look forward to many more good and active years ahead.

Do ask anything you like on the forum, there’s a lot of experience here.

Best wishes,
Rich 👍

[richfsModerator]

Hi Susan, like kh0305 I am one of the peer-volunteers that Myeloma UK have recently trained some to assist on this forum. I was treated for myeloma in 2019 with VTD and a stem cell transplant.

Pottersgirl, sorry to hear about your positive test, it’s great to hear that you got a monoclonal infusion so quickly. I hope that you shake off Covid quickly – how are you feeling?

It’s a very good question you ask, Susan, especially since myeloma patients were immediately put in the ‘shielding’ category. Myeloma UK have a Covid-19 information hub which is very informative. A Google search shows up a very detailed paper looking at real-world data to see if myeloma patients are indeed more at risk from Covid – https://www.nature.com/articles/s41408-021-00588-z – My very short version of their conclusion seems to be that around 5 – 10% more myeloma patients have died in the era of the pandemic than would have been expected without Covid being around. This study would largely cover the period prior to vaccinations being available. So, I think it’s certainly still best to be cautious about catching Covid, but not excessively anxious.

Do you know about the RUDY study? They sent me a blood test kit to check my Covid antibody levels (not that I ever heard the results!) I believe that Boots and other outlets can do a private Covid antibody test for under £100 which might give you some insight as to your current immunity.

Best wishes,
Rich 👍

[richfsModerator]

Hi all,

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

Just a very quick note to say that I (like all of us on chemotherapy or after a SCT) was very worried about infections. I’ve had a couple of colds which haven’t affected me any worse than other family members who have had them, so the immune system can recover and do its job. The old remedies of drinking plenty and having rest are good to remember. Do be aware of your white cell count as this can go up and down a lot following the SCT, and if low may indicate that you’re fighting an infection.

Keep in touch with your specialist nurse and the rest of your team, they’ll want to make sure that you get the best support.

Best wishes,
Rich 👍

[richfsModerator]

Hi Satellite,

Sorry to hear of your concerns, it’s horrible waiting for appointments and test results, our minds do run away with themselves.

Myeloma UK have just trained some peer-volunteers to assist on this forum. Like tw744, I am one such person and was treated for myeloma in 2019.

Whilst myeloma is difficult to diagnose, the blood tests would generally show a raised protein level (mine is currently around 80g/l above a baseline of 60g/l) and a low white cell count. This varies a lot and there are different types of myeloma, but the protein and white cell levels are key. They can do a separate protein split blood test to show if you have a high level of one type of immunoglobulin, e.g. IgG. If they suspect myeloma, your GP would normally want to put you on a ‘2 week wait’ list with haematology, but the NHS is under extra stress following the last couple of years.

If you have these figures from your blood tests, I’d press your GP to get you a swifter appointment.

Following diagnosis, and whilst struggling with pain and fatigue, I found mindfulness very helpful and subscribed to the ‘Headspace’ App on my phone, it was well worth the £10 per month. Also listening to some quiet music on a good speaker (not the stressful tinniness of a phone) at night can help you focus on something and relax. I find Dire Straits to be the best!

Hopefully you’ll find a simpler cause of your current symptoms, but do keep pushing your GP and the consultant that you see to find the actual cause, don’t be fobbed of and do make sure you ask specific questions.

Well done for posting in the forum, we’re here for you and wish you well.

Let us know how you get on.

Rich 👍

[richfsModerator]

Hi Geoff,

Just a quick line to say that we’re thinking of you and hope that you’re getting on OK with the SCT. The middle week was pretty grotty for me, but once I got some appetite back things improved steadily.

I hope that you have a view from the isolation room, you’ll have missed some rainy days, but spring is certainly in the air and you’ll have brighter days to come out to.

I won’t waffle on as you’ll probably be exhausted, but wanted to send you our best wishes and look forward to hearing how you’re getting on.

Best wishes mate,
Rich 👍

[richfsModerator]

Thanks for your message Peter, I’m sure your positive attitude will help you through each stage of treatment. I’ve always thought that even if it doesn’t help beat the disease, at least you feel better when you’re smiling! When my back is achey or if I was fatigued from the treatment, the best thing was lying down listening to “Just a Minute” or “The News Quiz” on the BBC Sounds App, laughter is certainly the best medicine, but don’t quote me on that! 🤣 We also enjoyed playing games like Trivial Pursuit without the board, just asking the questions as I could do that lying down – the distraction is good (even if my general knowledge isn’t!!)

Yes, the maintenance treatment is (as I understand it) a low-dose chemotherapy which you can be on for prolonged periods to keep the myeloma at bay. I wasn’t offered it, I think that Lenalidomide has only in the last couple of years been approved by the NHS for use following the SCT. Mulberry can let you know her experience as she’s been on it for some time, its aim is very much to extend the length of remission.

I asked a friend of ours who follows a gluten free diet (but is not Coeliac so doesn’t have to be quite so strict) after a visit to France if she’d had any bread, she said, “Yes, it was heaven, but I paid the price for it afterwards”. A couple of other friends are gluten free, so I know what sort of thing can be missed. They all swear by Doves Farm flours, they really are excellent and enable you to bake amazing GF bread, cakes, brownies, etc. They do loads, but this is the one my wife always uses – https://www.sainsburys.co.uk/gol-ui/product/doves-farm-gluten-free-plain-flour-1kg

Let me know when you get your blood results, being a scientist I did a graph of mine which showed the treatment was very effective 👍

I’m sure that in a few months time, after your SCT, you’ll find that the achievement of long walks or rides (or runs, don’t rule anything out!), will feel even better than it used to. I get a bit emotional sometimes after walking 10 or 15 miles on the coast path, or cycling 30 miles on Dartmoor, what a privilege and joy to be able to enjoy not just nature, but also the feeling of pushing our bodies hard. You’ll have to listen to your body, but you will get your energy back. Whilst the SCT was tough and draining, there wasn’t any Dex, so sleep isn’t as elusive! 🤣

Take care mate, speak to you soon,
Rich.

[richfsModerator]

Hi Shaz & David,

I was interested to find this thread and wonder if there should be a list of recommendations about furniture. Whilst the medical teams focus on treating the myeloma, we often feel helpless to know how to live with it.

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

At my worst, with 3 mild compression fractures in my vertebrae, I found sitting and lying down painful and stressful. A hospital bed with electric motors to raise me up meant that I could get up in 5 minutes rather than 40 minutes and took away the fear of lying down.

As I improved, following treatment, I eventually returned to our double bed which took a bit of time to get used to again and involved trying a few different mattress toppers until we found a good comprimise between firmness for support and softness for comfort.

I also have a ‘traditional’ fireside armchair, which in my mid-forties makes me feel like an old man, but is so much more comfortable to sit in.

I’ll see if I can get some more comprehensive advice going for this very practical aspect of living with a chronic disease.

Best wishes,
Rich.

[richfsModerator]

Hi Lili,

Sorry to be responding to this so late. Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I am sorry to hear of your husband’s diagnosis, how is he progressing with treatment.

Regarding the NHS App, I have certainly found that information doesn’t flow as quickly or effectively across different arms of the NHS, so no harm asking around, but I’d recommend talking to your GP as they are (as I understand it) the point of registration for the NHS and everything relating to the Covid vaccination comes through them and not the haematology team.

I’ve been contacted in a timely manner about the first 3 jabs, but not heard anything yet about the 4th jab which is available for more vulnerable people in the UK, including those being treated for myeloma.

Do let us know how you’re getting on, the forum is having a bit of a blood-infusion of its own at present as Myeloma UK aim to make it a more active and useful resource.

Best wishes to you and your husband,
Rich 👍

[richfsModerator]

Hi Geoff,

How are you getting on? Hopefully all went smoothly for you with the chemo and transplant? Have you stayed at home since then? I’m sure that you’ll be very well looked after during your stay at the Western General – OK, so it’s not the sort of holiday any of us would choose, but at least you’re brought 3 meals a day you don’t have to do any washing up!

Don’t worry about replying, I was REALLY tired for the 2 weeks after the SCT and just getting through the day was enough for me, although I was surprised that it was really just the 4-5 days in the middle that were rough, the body does an amazing job of recovering from the treatment, it feels so good once your stem cells get back home and start making all those vital blood cells again.

We’re thinking of you, just let us know if you need anything. If you feel tired and unwell, do know that it will pass and it’s worth it to get back to good health and the things (& people) that you love.

Rich 👍

[richfsModerator]

Sorry Victor, my follow-up message got caught up in the internals of the forum due to the links I’d added, but it’s now appeared above! Do let us know how you and your wife are getting on.

Rich 👍

[richfsModerator]

And an info sheet –

https://www.myeloma.org.uk/documents/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/

[richfsModerator]

Myeloma UK have some videos about the SCT process –

https://www.myeloma.org.uk/videos/high-dose-therapy-and-autologous-stem-cell-transplantation/

[richfsModerator]

Hi Peter – just thought I’d post that message here as well as the message I just sent, the links etc. may be useful to others who are starting out on the daunting treatment pathway. Rich.

—

Thanks for your message Peter, I’m really glad that you’re getting on so well with the induction treatment. Our mantra was very much “one day at a time”, but it’s good to plan and think ahead to a future of good health. How did you get on with your doctor today? Did you get any blood results? I expect you’re still a good few weeks away from the Stem Cell Transplant.

I, too, lost weight before diagnosis and in the early stages of treatment, but with the steroids managed to put it all back on again before the SCT which was good as I didn’t eat much at all for around 10 days after that. So, if you’re looking ‘well fed’, I’d definitely say that’s a good thing and will make it easier to get through the SCT as you’ll likely loose your appetite for a few days. Do keep up walking and as much exercise as you can before the SCT, best to go into these things as fit as you can.

Myeloma UK have some videos about the SCT process and an info sheet – I’ll put the links in another message as the forum doesn’t like you using links!

My main advice to you would be to see it as a continuation of the induction chemotherapy, and it sounds like you’re getting on well with that. I was really frightened about the high dose chemotherapy and worried that my transplanted stem cells wouldn’t work, but it all went really smoothly and was much less traumatic than I had expected. I was very tired, and there were a few days when my gut was pretty rotten (British understatement!) but I got through it and would certainly have the same treatment again if the need arises.

The isolation in hospital was difficult, even with visitors (this was pre-pandemic!) I often felt alone and anxious, so it was good to have some music and podcasts to listen to on a bluetooth speaker. The staff were fantastic, very caring, but all too busy rushing from patient to patient.

I’m sure you’ll speak to your team before your stay in hospital for the SCT, but if you’re coeliac you’ll have to really make sure that they can cater for you. I’m vegetarian so found the options quite limited, but most of the meals were actually pretty tasty.

I’ll stop waffling now, but do keep in touch as your treatment continues and I’ll be happy to chat about any stage of it. I’m 2½ years post treatment and enjoying cycling (a total of 1,000 miles in 2021!) and long walks, so yes, focus on getting better and you can get back to what you love.

Best wishes mate, and do get in touch anytime,
Rich 👍

[richfsModerator]

Good luck with the SCT Geoff, you’ll get through it. Are you allowed visitors? The worst part of the SCT is the isolation. I found it really helpful having a bluetooth speaker and listening to the radio, podcasts, comedies etc. You might feel too tired and weak for many phone calls, but I found it really helpful hearing from people – little and often.

Do ask for anti-sickness medication from when you first have the chemotherapy drug as the nausea can be managed, but the medical team might not give you anything for it in time. I caused myself some more bone pain the morning after the transplant from retching which could have been avoided.

Take some snacks in, I found ginger nut biscuits the best as they are easy to nibble on and also ginger helps with nausea. The only thing I could eat some mornings was porridge, so ask for that if they have it!

You’ll probably have a few rough days when your gut isn’t functioning very well, but it will pass in a few days, your bone marrow will sort itself out, you’ll get some appetite back, and you’ll be on the path back to good health.

I found it helpful to think that for every day that I was in the isolation room, feeling weak and rotten, I was buying myself a month’s worth (or more!) of healthy days in the future.

Do get in touch anytime, you’re not alone and you will get through this, just take one day at a time.

Rich.

[richfsModerator]

Thanks Victor, seems like the main advice out there is little-and-often and take some exercise before meals, which you already know.

Some other tips I saw on other websites are interesting, especially to have high-protein, high-calorie snacks on hand for when your wife does feel like something. Also, making mealtimes more attractive by using nice plates or table settings, or watching something fun on TV at the same time. As a patient myself, when I was exhausted and in pain and didn’t feel like eating, any little encouragement was beneficial.

I’d also say that you mustn’t be hard on yourself if you can’t find things that your wife wants to eat, or feel frustrated if you’ve cooked something nice that she then can’t face eating. Sadly this is one effect of the treatment. The encouragement is that it will pass, and the time when your wife will start craving food and enjoying eating again will come.

I’m from the West Country so found pasties (cheese and onion for me as I’m vegetarian) very good for keeping my weight up!

The following is from https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/eating-problems/poor-appetite.html

<b>What the patient can do</b>

Here are some hints that may help if you are having changes in your appetite:

• Eat several small meals or snacks throughout the day, rather than 3 large meals.
• Avoid drinking liquids with meals, or take only small sips of liquids while eating to keep from feeling full early (unless you need liquids to help swallow or for dry mouth). But remember it’s important to stay hydrated, so it might be best to drink most of your liquids between meals.
• Make eating more enjoyable by setting the table with pretty dishes, playing your favorite music, watching TV, or eating with someone.
• Be as physically active as you can. Start off slowly, and increase your activity over time as you feel stronger. Sometimes a short walk an hour or so before meals can help you feel hungry.
• Keep high-calorie, high-protein snacks on hand. Try hard-cooked eggs, peanut butter, cheese, ice cream, granola bars, liquid nutritional supplements, puddings, nuts, canned tuna or chicken, or trail mix. (See the table of high-protein foods in Eating Well During Treatment.)
• Review the tips on adding calories and protein to foods and include these in meals and snacks throughout the day.
• Eat your favorite foods any time of the day; for instance, if you like breakfast foods, you can eat them for dinner.

<b>What caregivers can do</b>

• Try giving the patient 6 to 8 small meals and snacks each day.
• Offer starchy foods, such as bread, pasta, or potatoes, with high-protein foods, such as fish, chicken, meats, turkey, eggs, cheeses, milk, tofu, nuts, peanut butter, yogurt, peas, and beans.
• Keep cool drinks and juices within the patient’s reach.
• If the smell of food bothers the patient, serve bland foods cold or at room temperature.
• Create pleasant settings for meals, and eat with the patient.
• Offer fruit smoothies, milkshakes, or liquid meals when the patient doesn’t want to eat.
• Try plastic forks and knives instead of metal if the patient is bothered by bitter or metallic tastes.
• Don’t blame yourself if the patient refuses food or can’t eat.
• Be encouraging, but try not to nag or fight about eating.
• If the patient can’t eat, you might want to offer just your company. Or offer to read to them or give them a massage.

This site has some interesting tips about increasing calories – https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20045046

<b>Increasing calories</b>

During illness, treatment or recovery, your need for calories and protein may be greater than usual. The following suggestions can help increase the number of calories you consume:

• Add butter or oils to foods. Use butter or margarine generously on potatoes, bread, toast, hot cereal, rice, noodles and vegetables and in soups. Put olive oil or another oil on bread, rice, pasta and vegetables.
• Spread peanut butter or other nut butters — which contain protein and healthy fats — on toast, bread, apple or banana slices, crackers, or celery. Dip pretzels in peanut butter.
• Use croissants or biscuits to make sandwiches.
• Add powdered creamer or dry milk powder to hot cocoa, milkshakes, hot cereal, gravy, sauces, meatloaf, cream soups or puddings.
• Add sliced avocado or guacamole to salads and sandwiches.
• Add seeds, such as sunflower and pumpkin seeds, to salads, stir-fries and casseroles.
• Add ground flaxseeds to yogurt, smoothies, hot cereals and casseroles.
• Top hot cereal with brown sugar, honey, dried fruit, cream or nut butter.
• Top pie, cake, gelatin or pudding with ice cream, whipped cream or cream.
• Use fruit canned in heavy syrup. It has more calories than does fresh or juice-packed fruit. If you prefer fresh fruit, add sugar and cream.
• Drink beverages that contain calories, such as fruit juice, lemonade, fruit-flavored drinks, malts, floats, soda pop, cocoa, milkshakes, smoothies and eggnog. Nutritional supplement drinks are convenient options.

Finally, Cancer Research UK has thoughts about making foods more appealing when you have taste changes – https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/side-effects/appetite-taste-changes

<b>Tips for taste changes</b>

• Avoid foods that taste strange to you, but try them again every few weeks as your taste may have gone back to normal.
• Choose foods that have strong flavours if all your food tastes the same. Try adding garlic, lemon juice, herbs and spices, and marinades.
• Marinate foods overnight or for a few hours (even 10 minutes will make a difference). Make a marinade with a couple of tablespoons of olive oil, and whichever herbs or spices you fancy. Add a splash of wine or some lemon juice if you like.
• You could use a dry marinade – sometimes called a rub. Mix up spices and herbs and slap onto uncooked meat or fish with clean hands.
• Avoid hot (spicy) foods if you have a sore or infected mouth.
• Gravies and bottled sauces can help to add flavours to a meal.
• You might find you prefer stronger versions of your favourite foods such as smoked ham or bacon or strongly flavoured cheese.
• You may prefer to avoid your favourite foods and drinks altogether during chemotherapy so there is no danger of going off them for good. This is particularly useful for children.
• Use plastic utensils if food tastes metallic. It can help to reduce the metallic taste.
• Avoid very cold or hot foods.
• Use chutney, pickle or relish to add flavours to food.
• Italian dressings, sweet and sour sauce and sweet fruit juice will enhance flavours.
• Keep your mouth clean and brush your teeth well.
• Tart foods have a strong taste. Consider lemons, limes, oranges and gooseberries, lemon yoghurt, lemon cheesecake, orange mouse, lemon sorbet and stewed gooseberries (avoid if you have a sore mouth).

I’m sure others will add some thoughts about what they found useful!

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