Chemo complications in older patients.

Hi  and a warm welcome to this corner Community although sorry that you had to find us and especially sorry to hear about your mum’s HL diagnosis.

I am Mike Thehighlander and I help out around our blood cancer groups. I was diagnosed back in 1999 with a rare skin Non Hodgkin’s Lymphoma so have been on this journey rather a long time.

ABVD is strong stuff but it has to be to push the HL into remission. I can’t hide the fact that there could be complications during treatment but let’s face it, it’s like any medication, some folks will have no problems others do.

I went through my second Stem Cell Transplant (SCT) when I was turning 59 - SCT is a full on process that invariably results in treatment ‘left overs’ so yes I now have AFib but interestingly the concerns around my Asbestosis and further lung damage did not come to anything.

I am left with a reduced immune system so do pick up my fair share of infections with hospital stays thrown in...... but on the whole, I am now turning 66 this year and living a great life that if I had not had my treatments would not be enjoying today.

This is all down to a full and honest discussion with her clinical team, listening to what they have to say and coming to an agreement that once reached should not be looked back at with regrets.

I have talked with folks in their 70s who have been through ABVD and are still living well.

Happy to talk more ((hugs))

Many thanks Mike for your reply ...

very sorry that you too have had such a long battle with cancer but am pleased to read that you are very much enjoying life now ...

I will pass this on and am trying to reassure my mum ...

I think these support units will massively help us to get through a difficult time ahead ..

My mum has an appointment with a doctor on Tuesday she also has a cyst that has grown on her ovaries so we will await to hear what this means .. 

she was told a few years back it would prob be best to have these removed so she is also skipping ahead and thinking that the chemo would weaken her so much that she then wouldn’t be stronger enough to go through surgery on her ovaries...

I assume your stays in hospital are to help you fight of infection as you said a lower immune system remains... was this fluids antibiotics etc 

I hope too reassure mum as much as possible she lives on her own 

and whilst I’m there 100 % for her I will be at arms lengh at times as I have three boys and an fully aware that we need to be careful not to bring germs to her ..

any other advice with treatment side effects things that helped or to watch out for ?

Appreciate that everyone is different.

many thanks again and thanks for the welcome ..

Good morning   life throws lots of challenges and with this many decisions that need to be made so navigating these is a challenge.

Do any the family go with your mum to her appointments?..... as there is often a lot of information given in a rather short time.

Hospital stays during Lymphoma treatments can unfortunately be rather normal.

Chemo targets the cancer cells and kills them off but like in any war there is collateral damage so good cells get a hit as well so the blood counts start to drop and that is when infections can creep in.

So a little stomach bug to you, could be a full on gastric infection for your mum so care needs to be taken - but don’t get paranoid about it..... and yes an infection can result in hospital stays due to antibiotics being through IV and just to keep an eye.

You can hit my name Thehighlander and see my long story but my journey was rather rare as my NHL is rare 

Advise.....? expect the unexpected and when the unexpected happens don’t panic call her team for advice (and we are here to help)

I will always recommend that when you embark on the treatment journey do read the information provided by your team and also on recognised Cancer Support Charities...... but stay away from random Google search’s.

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

The treatment information can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all bad.

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue. During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

Always around to help out as best as I can ((hugs))

Hi, just had my 3rd dose of ABVD (they do have other treatment types they can switch to if ABVD is going well after the 1st two doses) and I can feel there is great progress already. I have mild asthma and can also be vulnerable to chest infections, but I had a lung function test prior to chemo starting. I have a great McMillan support nurse that is usually able to help with any of my questions (hopefully your mum should also have one!)

Her consultant oncologist should also see her in between treatments so they can gauge if the mix needs to be tweaked to suit any issues arising

The Chemo team constantly monitor your progress throughout the treatment, and will probably ask her to sit and wait afterwards to check to see if she's feeling OK. If they don't, tell her to put her foot down and ask!!

I waited for almost a year before they diagnosed hodgkin after I saw every other type of consultant known to man, including tropical deases!. Now I know what it is I've got, my anxiety and stress levels are so much better. I have found that I'm getting 'chemo brain's as they call it, where my short-term memory is bad, and I've become quite clumsy (but my wife has always said I never remember things. Selective hearing and memory retention I call it)

I am 59 so not too far off your mum's age

I basically had two options about starting the treatment:

1. Have it, with hope and light at the end of the tunnel

2. Don't have it. Do nothing, and take my chances

It was a no brainer!

I wish your mum and your family all best wishes for brighter days ahead

Take care

Hi , I see that this is your first post so welcome to the community.

The more I talk with folks who went through the Lymphoma diagnosis process the more I hear about the time and challenges getting a clear diagnosis.

I have a rare type of NHL and even although my consultant was 99% sure I had this rare skin NHL it took a full year and 6 biopsies to get the evidence.

All the best with your treatment.

Thanks for your reply Mr Highlander, a I can only presume you're Scottish? Ditto!

Sounds like you've had some journey, but so glad you're through the other side of this horrid disease!

I had 3 biopsies before they decided to whip out 2 lymph nodes from my arm pit so they had something "bigger" to work with! Anyway got there eventually, and thankfully they now have me on the right road!

Advice to daisymoomoo - make sure your mum gets pre-meds before they start the ABVD session. I didn't have these on my first one, and my body had a shock reaction so they had do keep me in overnight for observations. The pre-meds I have now are some steroid tablets, tummy liner protection tablet, antihistamine & hydrocortisone IV. Not had any problems since. Another tip - tell your mum to ask exactly which drug they are administering before they start, so she's aware how she feels after each one, and ASK QUESTIONS if she needs to. She's the most important one after all!

As Mike says, if someone can go with your mum to the consultant meetings, this is a great comfort, and sometimes too much to take in at once, especially if your the patient. My wife has come to mine, and I try and listen, she takes notes and asks any further questions that I've not thought of

As other people have said to me (in the nicest possible way of course) if your're gonna get cancer, Hodgkin is the one to get - it's curable!

Best wishes

Morning , yes in Inverness but originally from the North East Aberdeenshire coastal fishing towns.

Yes it was a long and hard journey, this is often the case with some of the rare types of Lymphoma. You can hit my community name and see my story but have a dram at hand

Wow Mike  just read your story, what an ordeal you've been through! Are you some kind of Clark Kent??!! ;) I can only hope I have a fraction of the strength you've got to get me through this. One day at a time as they say! You're family must also have been very strong and supportive to help you through your horrendous journey, and SO pleased you've been in remission for a while now. Good man!

During my various investigations prior to my diagnosis, I was under the chest clinic and infectious diseases department, when they said they'd found a "collapsed area in my left lung" and would need a bronchioscopy. My oncologist said this could wait till I'd had my chemo treatment to see if this had improved things. I have a another PET scan in about 3 weeks, but my first one before I had treatment, my oncologist showed me it on her screen and said, "as you can see, you're lit up like a Christmas tree. You're whole lymphatic system is infected"

My original symptoms were severe nausea, night sweats, whole body rigors (shivering cold, but felt hot to touch) hypersensitive skin, fatigue and dizziness, and rapid weight loss (over a stone in 6 months!). All symptoms of Hodgkins but no one thought of investigating this for  nearly a year!

I also have peripheral neuropathy with swollen feet and ankles, and very little feeling in them, plus I've got restless leg syndrome but take Gabapentin which seems to keep the RLS at bay. 

I should've had a dram reading your story, but I practice the Serenity Prayer these days: "God (as you understand) grant me the Serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" I've been off the sauce for quite a while now, but I'll raise a glass of the soft stuff tonight for your continued remission and good health

Best wishes 

Hi again ,?I will always say that every cancer journey is remarkable. We do what we need to do to get through this.

Sorry to hear you had so many original symptoms...... apart from a rash on my skin and had no symptoms for the first 14 years and even then from then on it was side effects from treatments..... and never had a bad CT until year 14 -  NHL is so different.

I did have bad PN for a number of years after treatment and suffered from bad cramps during the night.

I do like the Serenity Prayer....

Unknown said:

accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference"