Non-Hodgkin lymphoma

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Mum diagnosed with high grade lymphoma - looking for a little reassurance

sarahlouise1973
Posted by

Hi Everyone, 

I hope you are all having a great day. I was looking for a little reassurance or advice really. My mum (and I apologise for not knowing all the technical terms) was diagnosed with low-grade NHL 8 years ago and then again 2 years ago. It has since returned and we found out today that it has transformed to high grade and will require a higher dose of chemo given over six months. She has been extremely fatigued, can hardly walk and has lost her appetite. She has also lost almost two stone in weight. 

My worry is that her body won't be able to take the chemo and I was really looking for reassurance from anybody that has been through this and a little more information on what to expect and what we can do to make her more comfortable. I know it's not going to be an easy ride. She is feeling so low at the moment as you can imagine and is finding it very difficult to see any positives or show any interest in anything. She has also been told that this time around she will definitely lose all of her hair. I've told her it's okay and that every day is a step closer to her getting better. 

I just want to tell her that everything is going to be okay. She is 71. I know there are no definites, but any positives I can give her would really help. Thank you all so much. 

Thehighlander
Posted by

Hi again, sorry to hear how your mum is doing. It’s hard to stand by and watch the struggles.

Interestingly, High Grade NHL will normally respond very well to treatment, yes it has to be hit hard and can be hard work but on the whole it can be very effective.

Do you know the actual name of the treatment she is having? as we may be able to help more.

I had 6 cycles of chemo (R-EPOCH) with 3 weeks between each cycle that required me to be in hospital for 5 days/nights so 5 x 24 x 6 = 720+ hrs

I was 58 when going through treatment and on the whole did ok but the fatigue was ever increasing over the weeks but keeping some activity going helped overcome some of it.

She does need to drink lots of water as this helps her kidneys and will flush out the toxins that come from the chemo.

During my chemo I lost 27kgs but I had it to lose and it can be normal for weight to drop off.

Eating can be a challenge, but little and often snacks. Keep away from normal plates of food but use stuff like a cup of good home made soup with some cream a few times a day as this will bring the protein. Mashed Potatoes with some gravy and cheese....... stuff that is not hard to eat.

If it is strong chemo her hair will go but it is part of the journey and will grow back, I lost my hair three times over my treatments.

Keep pushing in. As I was the patient it would be good for you to connect with people supporting family so it would be worth also joining Carers Forum and Friends and Family Forum as these folks can help in a different way.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

sarahlouise1973
Posted by

Hi Mike, 

Thank you so, so much for taking the time to reply. You don't know how much that has helped this evening. I've also just read that High Grade will respond well to treatment in most cases. That's good to know. Anything I can do to buoy up her spirits is going to help immensely. I'm not sure she's quite ready for me to send her comedy wig photos yet, but that will hopefully come later to make her laugh.

I don't know the name of the treatment she is due to have, but I will find out. I do know that it will be 6 cycles every 3 weeks, but I'm not sure if she needs to stay in hospital. She starts treatment this Thursday. I will find out as much as I can. 

That's great advice about the water and little and often eating, too. She is struggling to eat at the moment as the lymph nodes in her abdomen are so swollen. But on the plus side, we were worried that this mass was something a lot more sinister, so it was a relief this afternoon to hear no organs were affected. Every cloud and all that! 

Thank you so much for the forum recommendations, too. I also think you might have replied to one of my messages when my mum relapsed before. It is so reassuring to speak to somebody who has been through it, and although I wish that didn't have to be the case to get the best advice, it is a huge help. 

Have a wonderful evening! xx

Thehighlander
Posted by

A little bit of humour can help, well it did for us. I just had a check back and yes, I did talk with you in your first post.

I don’t know if you have looked at my profile () but my mass was on my neck, it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

The chemo tends to work relatively quickly and most folks will see the difference after a few cycles.

Blood Cancer is a completely different animal from solid tumour cancer, it can’t just be cut out as it is in the blood so the chemo breaks down the growth areas and that is why the water is very important.

Some types of blood cancer are very hard to treat and the chemo used is strong and can take much longer than other treatments but it is all do-able and normally shows good results.

Your mum should have been given information as to the name of the treatment she will be having. 

Here is some bedtime reading for you.

Nausea

Fatigue

Avoiding Infections

Eating and Neutropenia

Peripheral Neuropathy

We are around to help out at any way we can.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi Sarah, I would expect your mums fnhl to have transformed to DLBC and the normal treatment (unless she has had it already) is called RCHOP, I had dlbc 10 years ago and had 8 rounds of rchop and my disease was in the abdomen and small intestine. Its probable she will have a scan after the 3rd cycle to check the treatment is working and if the mass is bulky then she will have some scar tissue that will remain post treatment but it does reduce over the years. RCHOP is very effective and it melts the mass away so she will get relief from any symptoms quickly and possibly within days. Not everyone suffers with all the side effects, fatigue and constipation are the two most common, after that its wait and see. I would guess she has had rituximab before in her previous treatments so depending on how she reacted to it it may be worth sharing that at the first treatment.

Any questions, just ask the is lots we can all share and how we coped, not sure if Mike mentioned it but a daily diary helps to for 2 reason one to record any questions that crop up and also so your mum can tell the consultant or nurse how she has been when she goes for her in-between each cycle check up. She will also have blood tests a couple of days before each round to check she is ok blood count wise for each cycle.

regards

John  

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Tina478
Posted by

Hi Sarah

It sounds very rough for your mum and she's so lucky to have you looking out for her.

I too had high grade lymphoma in my abdomen in the form of a huge rugby ball sized mass and was terrified of it and the treatment - 6 rounds of R-Chop chemo plus radiotherapy.

The treatment was not as toxic or bad as I was expecting - quite the opposite, although I did suffer some mild side effects, but they were tolerable.  I was started on steroids first and the effect and relief was almost immediate.

If the treatment is R-Chop, it will be in 3 week cycles. A few days mid cycle will be the most difficult, but again tolerable. Hair loss is inevitable with R-chop and a soft sleep hat might be a good idea.

Her taste will probably be affected during treatment and I can highly recommend fresh pineapple with mint, boiled eggs and vanilla ice cream to at least eat something that is palatable.

High grade is very treatable these days.  The treatment managed to totally eradicate mine and I am still in complete remission.

Very best of luck to her and please if you have any questions, just ask.

Best wishes

Tina

Courage does not always roar..........

Ducthie
Posted by

So sorry to hear this. I had also a high grade cancer and although it sounds so serious which ofcourse it is as they need to get rid of it soon as possible, it is also one they can target so much quicker. As hair is quickly grown too it will fall out but will come back very quickly after treatment. Get her some lovely soft beanies especially for at night. I dont know what kind of high grade lymphoma she has but i too was completely exhausted before treatment. After one session i felt so much better. Keep being positive, trust the doctors and keep being there for her. And please keep asking her medical team the questions you have, it is really assuring and they really don't mind. 

Diagnosed in may 2018 with Primary Mastetic Large B-Cell Non hodgkins Lymphoma. Cancer free since November 2018. 
sarahlouise1973
Posted by

Thank you so much, everyone, for your replies. Amazing! You really are an inspiration and I have some good stories I can go back to my Mum with stories about people that have been there and done it. She does feel quite alone right now. She is having CHOP as she had a reaction to rituximab before and can't have it. 

I have ordered her a soft sleep cap to wear and will take it to her tomorrow to wear when she is ready. Thank you for that advice. There are also some great videos on the MacMillan YouTube page about losing hair and how to cope which I will bookmark for when she is ready. It's also good to know about foods she can have that are palatable. :)


I will let you know if I have any more questions, but I really appreciate the time you have taken to share your journeys and stories. Thank you! 

johnr
Posted by

Hi there are alternatives to Rituximab now so worth asking one in particular Obinutuzumab should be an option or one of the other second generation drugs not derived from mice cells.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Tina478
Posted by

Hi Sarah

How did your mum's treatment go today, hopefully all as planned?

Best wishes

Tina

Courage does not always roar..........

sarahlouise1973
Posted by

Hi Tina,

Please forgive the delayed reply. It's been a rollercoaster of a week. Instead of going to her chemo session as planned, my Mum, unfortunately, developed a chest infection and was rushed to hospital on Thursday. They diagnosed her (quickly thankfully) with sepsis and she is currently in intensive care. She also has a collapsed lung. However, this morning she was sitting up and eating toast. We thought we were going to lose her on Thursday and so this is progress indeed. I know she isn't out of the woods by a long shot yet. but she is currently hooked up to an army of machines and in the best care possible. So at the moment, every day counts, but her oncology consultant is in close contact with the hospital. They want to start her chemo as soon as she is well enough. 

Thank you for following up. That's really lovely of you. Xx

Thehighlander
Posted by

Sorry to hear this Sarah, but this is indeed part of a Lymphoma rollercoaster.

Having had Sepsis a few times it is rather scary, but as your mum is in the middle of Lymphoma treatment the medics will act quickly as they do understand the immediate challenges and need for treatment.

Warm ((hugs)) all round x

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

sarahlouise1973
Posted by

Hi Mike, 

Isn't it just? I'm so sorry to hear you have also been through this, and several times too. Speed is most certainly of the essence! We're taking each day as it comes. This morning was good. I left her sitting up in bed (on the instruction of her very proactive and lovely nurse) and eating toast and jam. Edit: You already knew about the toast from the last message. :D We continue to remain positive and encouraging around her. 

Thank you so much for your support. All the best. Xx

Tina478
Posted by

Hi Sarah

So sorry to hear of the added complications, thats very testing for all of you.

As Mike said, because she is a Lymphoma patient, she will be getting the very best attentive care.

I hope she soon recovers and can move on to her planned reatment.

Eating toast is a very positive sign.

Best Wishes

Tina

x

Courage does not always roar..........