Chemo. Doxorubicin side effects

Hi Sue Sue456 and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you are on the cancer rollercoaster.

A cancer diagnosis can bring a lot of stress, confusion and questions on but talking with people who are on the same journey can help a lot.

Can I direct you to this link to our very supportive Soft tissue sarcomas group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.

Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.

This site is organised into various groups so we do have lots of other general Cancer experience groups.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Hi Sue456

I see Mike has given you the useful signposts. Can I wade in with some practical stuff? I’ve had the modified form IV doxorubicin (PLD or Caelyx - it’s wrapped in a fat globule to slow release and minimise side effects) in combination with a platinum based chemo. 

For me, the biggest side effect was fatigue. I just went with my body and slept when I needed to while making sure I had a walk outside every day, no matter how short.

The anti emetics kept on top of the nausea but did give me constipation which I managed with senna max strength to keep the gut moving and movicol to keep the pooh soft. Prevention is better than cure is my advice on this. 

The steroids are important for minimising side effects and there’s some evidence they make the chemo more effective. However I find them hard to take. They make me very jumpy and irritable and I find it hard to sleep on steroids. They also made me hungry. It might be worth warning your loved ones that you could be a bit snappy because of the steroids.

I suffered hair thinning on the PLD rather than hair loss. Has anyone mentioned this? I have been through hair loss twice now and in winter found a cashmere beanie was just the thing. Soft and warm. 

I think a blog is an excellent idea. Do it! 

That’s probably enough for now. I don’t want to overwhelm you. I’m active in the wonderful group living with incurable cancer. Do come by and have a read. You’re welcome to join in at any time but I recognise how hard that might feel right now. 

Xx

Dear sue, I did 8 cycles of doxorubicin and dexamethasone, I felt nauseous but was never actually sick. I lost my hair but it has grown back straight after being curly for a few months. Constipation was an issue and the dexamethasone shortened my fuse somewhat. Overall it wasn’t as bad as I thought it would be so don’t worry too much. I think writing a blog is a great idea and I for one will be happy to read it and contribute. Good luck with everything and look forward to hearing your story.

Many thanks ...I've had a look at the sarcoma group and will definitely join the discussion.

Thankyou so much Daloni,

I've already warned my husband about the possible irritability...he didn't look too impressed!

He's had to put up with a lot so far...and the journey has only just begun.

Hi Sue - I have incurable sarcomas and after having a 24 cm one surgically removed from my pelvis was cancer free for 5 1/2 years , it returned and I had a few treatments which didn't work however Doxorubicin (no side effects apart from tiredness) reduced the tumours by 30 % then stopped any growth for a further 18 months , since then they started growing again but Caelix and now radiotherapy ( which I was told by the Marsden wouldn't work ) has kept them at bay . `The only downside is I was told it may be cardiotoxic further down the line and I now have Atrial flutter but that's kept in check with further meds , without the Doxorubicin I wouldn't be here typing this , good luck with everything .

Mark .

Many thanks...sounds OK when you put it like that.

Very helpful

Sue

Thankyou for those encouraging words Mark. A 24 cm sarcoma makes my tiddly 5cm one seem like nothing. Problem is it is in the wrong place. 

best wishes

Sue

Hi Sue456. How have you been since your 1st Doxorubicin? Have you started a blog yet?

I'm not very good at catching up on here but will make more of an effort!

My hubby has his 4th chemo on 6 December. The Doxorubicin dose was reduced for the 2nd and 3rd session because he developed 'mucositis' - a mouth infection that first resembles thrush.

Hope you are doing ok

Regards 

Sandra

Hi Sandra,

good to hear from you. I am now 7 days since my fist Doxo and apart from the first couple of days it has been fine. Yesterday I had a stunning dog walk along a deserted beach in Cornwall...and the sun shone. I guess I am now coming into the period of bone marrow suppression so I'm being pretty careful.

  I had just logged in to post blog 2. I tried to post one with images and failed dismally so I have resorted to text.

Hope your husband's next Doxo goes well.

best wishes

Sue