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I was diagnosed with Waldenstrom's macroglobulinaemia (aka Lymphoplasmacytic lymphoma) just over 2 years ago. On my latest visit to the consultant at the beginning of January I was told that she was considering starting low level treatment (antibodies, steroids and tablet chemotherapy) because my paraprotein levels are now much higher than expected and my white blood cell count is lower than it should be. I have another appointment with her at the beginning of March.
Because my appointment was at 4 pm and I didn't see her till 5 I didn't get an opportunity to ask the questions I wanted to so I'm asking them here in the hope that I can prepare for treatment before my next appointment just in case I don't get an opportunity next time either.
1. Do I need to get my hair cut short in case it starts to fall out? I moult like an old dog anyway, without having chemo!
2. I suppose I'll be able to take the chemotherapy tablets at home, but what about the antibodies and steroids?
3. I'm not sure what tablets, antibodies and steroids I'll have so I can't look them up online to find out what side effects to expect.
4. What other questions, if any, do you suggest I ask at my next appointment?
Thanks for getting in touch with us.
We’re sorry to read that you didn’t get the opportunity to ask your consultant questions about your treatment.
I’ll try as best that I can with the limited information that I have to answer your questions. If you don’t mind I’ll answer your questions one at a time so I don’t miss any, but to help get them clearer in my mind.
“I'm not sure what tablets, antibodies and steroids I'll have so I can't look them up online to find out what side effects to expect.”
There are different types of chemotherapy regimes that the doctors may prescribe.
The first treatment is usually a combination of chemotherapy drugs and the antibody therapy Rituximab. Steroids such as Dexamethasone are also commonly used. Several drugs that work in different ways are used together to give the best chance of controlling abnormal cells.
The common regime that has these three types of drugs is DRC.
R = Rituximab (antibody therapy)
C = Cyclophosphamide (Chemotherapy)
If this is the regime that your consultant is thinking of giving you here is a protocol explaining how it is given.
It also lists the potential side effects.
However, it’s important that you get your treatment plan from your consultant to make sure this is the right information.
If you have a haematologist nurse specialist, you could give them a call. They should be able to give you more information as the will be able to talk to your consultant about what their next plan for you would be.
“I suppose I'll be able to take the chemotherapy tablets at home, but what about the antibodies and steroids?”
If it is DRC then Cyclophosphamide can be given Intra venously(IV)or in tablet form. It is usually given Day 1-5 and as a tablet to take home
Dexamethasone can be given on day 1 orally or intravenously. But if you need steroids as part of your take home anti sickness drugs they can be taken as a tablet.
Rituximab is usually given IV and you won’t take this home with you.
“Do I need to get my hair cut short in case it starts to fall out? I moult like an old dog anyway, without having chemo!”
Depending on the chemotherapy regime that your doctor recommends you may not have to have your hair cut short. Some people may have hair thinning rather than hair loss. It’s okay to wait until you know what regime you’re getting as hair loss doesn’t tend to happen right away it tends to start about 2 weeks after you have the drug.
You might find our information about hair loss and understanding chemotherapy helpful to look at before you see your haematologist.
“What other questions, if any, do you suggest I ask at my next appointment?”
We have some suggestions about the type of questions that you might find helpful to ask at your next appointment.
I can see that you’ve already joined our Non-Hodgkin’s Lymphoma group but haven’t been active for a while. You might find it helpful to pop back and talk to others who have gone through a similar experience. I’m sure they will be able to offer you support as well as give you an idea of what to expect.
Best wishes and take care.
Ellen-Macmillan Online Digital Nurse Specialist.
Thanks Ellen. That's helped a lot. I've flagged your email and bookmarked this page so I can refer to it whenever I need to.
I haven't been active in the group so far because I've been on a "watch and wait" regime since my diagnosis in January 2018 - following a bone marrow biopsy just before Christmas '17. At the time my paraprotein levels were at 10 so the consultant said I was on the "lower borderline" and it could stay like that for several years so, since nothing was likely to happen, I thought I'd lurk in the background for a while until it did.
Although it's very nice to know that - at my current age of 69 - I'm on the lower end of the age group for developing this condition, my consultant told me when I saw her at the beginning of January this year that this has also contributed to its faster than usual progress (paraprotein up at 14 and white blood cell count down) - hence my having to begin treatment.
I'm not so much worried as apprehensive. I can cope with anything as long as I know what's happening and what to expect - which is why I'm trying to find out as much as I can now so I can prepare.
Treatment will not be easy for me because I've always been active. I find pacing myself difficult and I tend to do too much then collapse. I'm currently recovering from a nasty viral infection which laid me out in bed for a fortnight and has left me with a hacking cough (yes, I did have a flu jab - in November). I can't drive so I have to travel on public transport - not a good idea at this time of year with a compromised immune system. Although I've tried to take precautions they've obviously not been enough. I've been binge-watching tv thrillers on my laptop while sitting up in bed but I still wanted to be up and about - especially on days when the sun was shining through my window and telling me it was an ideal walking day. This is probably why they're not going to begin treatment till March when the worst of the bug season should be over.
Ah well. Who knows - I might actually lose weight! That would one GOOD side-effect!
Thanks for getting back in touch with us.
I’m glad that you found the information helpful. It’s understandable why you’re feeling apprehensive about starting treatment. You wouldn’t be normal if you didn’t feel this way. It’s the unknown and uncertainty about what to expect that can cause this.
It can help to find out as much information as you can to help you to prepare for what may happen in the future and for many people it can help to give them a sense of control.
I’m sorry to read that you had a nasty viral infection but glad that you are now on the road to recovery. Taking precautions to minimise your risk of infection is all you can do. But,no matter what you do you can still become unwell all you can do is try and minimise your risk as much as possible
We have these general tips to help you to reduce your risk of getting an infection when your immunity is low that can be helpful to read.
You can also look at our information about eating well and keeping active.
Chemotherapy can add to the tiredness that you may already be experiencing, our information about managing fatigue can be a great resource. It has lots of helpful tips and information that hopefully you will find useful to try.
I’m sure you will also find the support from our Non- Hodgkin’s group once you decide to pop in and talk to others.
We wish you all the best with your treatment and please feel free to get back in touch.
Ellen-Macmillan online Digital Nurse Specialist.
As you live in the South it might be a good idea to ask your consultant for a 2nd opinion from UCLH, Dr Shirley D'sa has a clinic specifically for WM patients. The weapon of choice seems to be Ibrutinib now even for first line treatment.
You will also find the below organisations of help, some fantastic YouTube videos that will enlighten you.
Hope that helps
I saw my consultant a couple of days ago and she said I'm currently "stable". She also mentioned the coronovirus in passing so - between the two - she's postponing treatment because "intervention is not advisable at this time" and I have to see her again in May. I psyched myself up and even had a haircut to prepare for the treatment she told me would be starting and now - nothing. Back to "watch and wait". It makes me feel a fraud because it's a bit of an anti-climax. I know there are people who would love to be in my position but I feel somewhat "deflated" now. Am I being silly?
Thanks for getting in touch. Please don’t think you are being silly.
Chemotherapy does affect your immune system and does put you at risk of picking up infections, and I suspect this is why the consultant mentioned coronavirus in passing. It is great that you are in a stable state at the moment, and glad to hear your consultant will be reviewing the situation in May.
I can appreciate having made practical steps to prepare for chemotherapy how that would have prepared you mentally for starting treatment, and it must feel like an anti-climax. It sounds like you have been on a watch and wait plan with your consultant perhaps for some time. Many people on watch and wait can find that treatment plans do change at short notice if things stay stable and often feel similar to the way you do.
I am glad you can see the positives in the situation, but I can appreciate how you feel. While she is not seeing you until May, remember is symptoms change do let her know before then. If you think it might help to chat about things do give us a call on 0808 808 00 00.
Allan-Macmillan Information Nurse Specialist
I've been on "watch and wait" since my diagnosis in January 2018. So far, it's been fairly low grade. My paraprotein levels were then at 10 (apparently "normal" is between 6 and 8) so I was just over the lower borderline. The consultant said that they wouldn't start to be "concerned" till my levels reached 12 and they'd consider treatment when they got to 14. In January this year my paraprotein levels were at 14 and my white blood cell count was "down" (but they didn't tell me how far) so the consultant said that they'd start me on "low level" treatment and would discuss it at my next appointment (which was a few days ago - when I posted in here). Then, as I said, she told me that treatment was "inadvisable" at this time and that I'm currently "stable" so I have another appointment in May.
My main problems with this coronavirus situtation are social. I live alone and I'll be 70 in September this year. I can't drive so if I can't walk to where I want to go I have no choice but to catch buses and the shortest journeys (to the hospital, for instance) are over 10 minutes. Fortunately, after living in a privately rented flat for 20 years, I managed to move into a sheltered housing complex where I'm one of the youngest residents so I have access to a welfare team should I need them. I have friends but they've all got families and/or jobs. My son is overseas and my daughter and her family are at the other end of the country. However, I'm extremely independent and still fairly active. I hate bothering people - especially since I'm relatively healthy compared to most of the other residents who are much older and have far more complex issues.
I've been through worse though. My ex husband was in the RAF and we were caught up in the Turkish invasion of Cyprus in 1974. I was in "lockdown" - alone, except for my baby son, for several weeks because all the men were on the bases - with the army dropping ration packs on our doorsteps, before we were evacuated up to the bases and then repatriated back to the UK. At least now - unlike then - I have the internet so I can keep in touch with people. I think I might raid my local pound shop and bulk buy chocolate biscuits so I can sit up in bed and binge-watch TV programmes on my laptop while munching them. It'll make being cooped up far more bearable, but will have an adverse effect on what's left of my waistline!
It’s nice to hear from you again. We don't know exactly what will happen over the next few weeks and months but I’m sure your family and friends would do all they can to help if you needed anything.
On a lighter note, I don’t think you’ll have any problems bulk buying chocolate biscuits (unless this post has given others some ideas!).
We offer a variety of support on our helpline where you can have the chance to talk through what’s going on. If you’d like to talk, we’re available 7 days a week from 8am – 8pm on 0808 808 0000. Don’t hesitate to let us know if you need anything. Best wishes, Karla (Macmillan Information Nurse Specialist).
This is bringing out both the worst and the best in people. I'm being inundated with offers of assistance from many quarters. I live in a sheltered housing complex and our Welfare Team called me on our intercom system yesterday to ask if I needed anything and whether I want them to give me a daily call. I thanked them and said I didn't really need a daily call but I'd let them know if I needed anything. Today, I had a call from my local Wessex Cancer Trust drop in centre to say they were closing the centre (for obvious reasons) till further notice but they were setting up a Facebook group and would also phone or email everyone who wanted to keep in touch. I opted for an email and the Facebook group. Another Facebook group I belong to have set up a thread where people who are willing to help the housebound can post where they live and make contact.
However, on the other hand, I have a friend who REALLY doesn't get it - despite knowing what I have and seeing the effects of fatigue curtailing my energy levels and what I can and cannot do in the way of physical activities. We usually go out on Tuesdays to the cinema (Odeon cinemas have a twice-weekly Silver Screen for Seniors - £3 for a film, a hot drink and a biscuit) followed by a pub lunch. Yesterday, despite my explaining that I'm supposed to be staying indoors - and why, therefore, it wasn't advisable for me to do this - she started ranting about "panic" and "the thought police" and a whole lot more along those lines so I ended up going out with her (fortunately she drives but she still wanted me to do what I normally do and take the bus to meet her because she doesn't like driving in town!). After much texting I managed to persuade her to pick me up from home but she grumbled. We set off for the cinema - which she didn't tell me until we were almost there! When we arrived we discovered they were closed till further notice so we went to a huge supermarket with its own cafe and had lunch there. Fortunately, there weren't all that many people in it. I decided to do a bit of stocking up. We then went to ANOTHER store nearby (a big Poundland type shop) and then she dropped me off at home.
I'm not afraid or panicking but I am trying to be careful. There's a big difference between staying in because I'm scared and staying in because I'm not being reckless - but it seems she genuinely cannot see why - for a change - I'm obeying orders by staying indoors and trying to keep away from crowded places as much as I can. How can I get it into her head that I really NEED to do this and I'm not "giving in to intimidation"? I think she believes it's much like her asthma.
I’m Elise, one of the other nurses here on the support line.
It sounds as if you are doing everything you can to keep yourself safe .
Of course, it’s essential that EVERYONE ( including your friend) adheres the current guidance about social distancing.
We all have a role to play in trying to lessen the impact of coronavirus in our communities.
You mention that your friend has asthma and therefore she too, is currently regarded in the “increased risk group”.
Sometimes, we need to accept we cannot control other people’s opinions and remain focused on our own health and wellbeing and there may be no way you can come to an agreement with your friend about this crisis.
But my strong advice to your friend would be to listen to what doctors and nurses working in the NHS are saying which is about treating this crisis very seriously and to minimise the impact on the NHS by adhering to the advice about social distancing.
As new information emerges, the NHS Coronavirus page will be updated. You can check the latest information here. We are also aiming to keep providing information which is specific to people with a cancer diagnosis through our Cancer and Coronavirus page.
If you have concerns about symptoms please follow the latest NHS111 guidance.
There is also some helpful information here about looking after your mental health during this time.
Please do take care,
Cancer information Nurse Specialist
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