[rabbitParticipant]

Hello Dids.

Welcome to the forum.

As spk2021 says, going through chemo can be tough going. I went through quite a few side effects, the single worst being fatigue. I would be a liar to say that it is going to be easy.

BUT:
– You get through it. Having things to look forward to can help.
– Support from you and any other family and friends can help enormously, whether it is keeping his company, helping with chores or anything else.
– If he can maintain interests, that can help. I spent a lot of time in the early months of treatment in nature: listening to and watching birds, for example.

Meanwhile, not everything online is scary. New entire categories of treatment are being developed, including CAR-T, bispecific antibodies, CELmods and dentritic vaccines.

[rabbitParticipant]

Capt-mh,

Welcome to the forum.

Among your questions, you asked:
“Is the GP the right person to talk to about what other help I may need / have available to accommodate me living alone? Is there someone I should be talking to about financial assistance, home modifications IF needed etc?”

A good source of information and advice is Macmillan Cancer Support. They are really helpful, whether you want practical info or just someone to talk to.

Rabbit

[rabbitParticipant]

Hi Emily,

Holidays are certainly doable during treatment. I could have done so, but decided not to have a holiday for my own peace of mind. I can then get treatment for chemo side effects from the medical staff who know me, and look forward/plan for when I was going to be in remission.

However, now that I am in remission (which started in July), I have been on three holidays with more planned. Yes, it costs a bit, but sometimes money is there for spending!

It is becoming easier to enjoy the holidays: at first, the fatigue (a common chemo side effect) meant that I had to rest a lot, but that has reduced.

These are suggestions for anyone with myeloma going on holiday:
1. Get travel insurance, disclosing myeloma.
2. Don’t go alone if possible. A companion can really help if you feel rough.
3. Take an EHIC or GHIC card if you are going to the EU.
4. I am choosing to only go to places that have excellent healthcare. Again, piece of mind.

Rabbit

[rabbitParticipant]

Hi Jenny,

You asked about exercise.

I am on maintenance with Lenalidomide. I have had a discussion with a specialist physiotherapist and this was her advice.

1. Walking is fine.

2. Cycling is also good. I push myself pretty hard on a stationery bike in the gym.

3. I do not have bone lesions and I had been lifting weights for years (I must emphasise that this is not for everyone with MM due to the risk of fractures). She was comfortable with me doing mainstream resistance training – chest presses, squats etc).

She advised against Pilates and yoga as the positions and moves could cause fractures.

Running at speed would be problematic (if you have heard about the forces involved being multiples of bodyweight, you can guess tgat fractures are again the issue) but jogging is OK.

When going through the worst of ‘full chemo’ even walking as exercise was a challenge (heart rate hit 110, I needed to rest frequently etc), but since maintenance started in July I have made good progress. At my best, the walking and cycling are as good as ‘the old days’!

Again, this advice was tailored to my situation and may not be applicable to everyone.

[rabbitParticipant]

Hi Taffd,

Thank you for your reply. That is very interesting. Sorry that the lenalidomide affected you so much. It is bizarre how the same chemo can cause such variable side effects in different people.

[rabbitParticipant]

Hi Hyde,

My haemotologist and I agreed that it would be best if I did not go ahead with an SCT. Many reasons…

1. I have a heart condition. The SCT would put strain on my heart that could kill me.

2. He had read recent research that, at least for my high risk version of myeloma, SCT made little difference in terms of life expectancy.

3. I had responded unusually well to the first line of chemo, but had continued to have chemo for the full 6 cycles originally planned (so my cancer cell count would be exceptionally low now I am in remission).

4. The aphoresis didn’t go so well. I only have enough stem cells frozen for one SCT. Better to keep that in reserve at this stage.

[rabbitParticipant]

Hi Morweena.

This was roughly my experience. Initially the side effects weren’t so bad. However, it got worse (accumulating toxins in my body?) over the first couple of cycles.

The fatigue can be tough to deal with. For me, I had serious sleeplessness for months, which made fhe fatigue worse. Then a friend of my wife’s recommended CBD oil. It has helped me enormously with sleep from the very first night.

Beyond that, I suggest:
– Ask for help from those around you. I am so grateful to my family for everything that they have done (and continue to do)
– Make the most of when you have most energy.
– Follow the Frozen philosophy. If something to be done is not so important, then ‘let it go’.

[rabbitParticipant]

Hi Squirrel,

Thanks for your messages. After being told that I had high risk myeloma, I also went through serious depression. However, I have bounced back both physically and mentally. Now that I am in remission, I am rebuilding my strength and cardio fitness, I have had holidays and am generally getting on with life.

All the best, Squirrel.

[rabbitParticipant]

Hi Rebecca,

Thank you very much for your messages and information.

Much as I appreciate your comments about not trusting statistics, that’s difficult for me to do – I am a mathematician / statistician!

However, the percentiles beyond the median overall Overall Survival period are high (in plainer English, people can live far, far beyond the life expectancy quoted), and the new treatments coming in can change everything!

All the best, Rebecca. May you continue to defy the stats for many decades to come.

[rabbitParticipant]

Hi Zainab,

I am glad that you have made so much progress. I imagine that, being a teacher, work is tougher for you: being on your feet, not being able to have a nap until you get home, marking homework after the school day has finished…

I was under some pressure to return to work sooner rather than later. After a couple of months of sick leave on full pay, my sick pay had reduced. Another couple of months and I wouldn’t have got paid at all.

All the best, Zainab, and I hope that your maintainance has no side effects.

[rabbitParticipant]

Hi Mulberry,

Thanks for your reply.

I know that new treatments are on their way. Car T and bispecific antibodies have great promise, but I am aware that:
– Car T can be very tough to go through due to cytokine storms (is it similar for bispecific antibodies?)
– As far as I am aware, no drugs based on either of these technologies are approved yet in the UK, although there have been approvals in the EU and US.

I hadn’t heard of Cel mods before. Time for some more researching!

Rabbit

[rabbitParticipant]

Hi Squirrel,

Thank you for replying. All the best with your SCT.

Rabbit

[rabbitParticipant]

Hi Squirrel,

OS = overall survival in years.

I have only just joined this forum today. I have been learning about myeloma mostly from research papers, so I have absorbed some of their jargon. Sorry!

It is an individual thing. As well as having a heart condition which means that an SCT would put a lot of strain on my body, I have responded ‘exceptionally well’ (quoting my consultant) to treatment: 6 cycles of VRD-Dara (Velcade = Bortezomib, Revlimid = Lenalidomide, Dexamethasone and Daratumumub), so there has been less need for an SCT yet. Currently I am in remission (getting maintenance chemo of Revlimid and (every 4 weeks Dara and Dexamethasone)).

I only have enough stem cells stored for one SCT anyway, so for me it can make sense to leave the SCT for now.

By the way, I live near Luton: I get treatment in London.

[rabbitParticipant]

Hi Sqirrel,

I also have the t(4, 14) translocation. I have just finished my first line of treatment and I am in full remission for now.

My haemotologist advised slightly against having SCT as I have a comorbidity (basically: a heart condition). Also, he said that the latest research indicated that there was little or no difference to OS from having an SCT, at least not yet. Meanwhile, I have some stem cell frozen ready for whatever the future may bring.

[Author]

Posts