SIDE EFFECTS OF TAGRISSO FOR LUNG CANCER

Hi All,

Wow what fabulous results, Tagrisso seems to have been the wonder drug for you.  I am on it also as Diz said and my last scan showed no change all round except a 2mm reduction in each of my secondary tumours.

Diz, I hope all goes well for you next week and you bounce back quickly.  Hope to see you soon, think it may be second week in September from what she said on the phone.

Much love to everyone.

Alison xx

Dear Diz

It was really nice to get your reply but I was sorry to read you had sepsis! to be honest I did not know what sepsis was so of course I "Googled" it and wow what a surprise; obviously something that needs watching very carefully. Which perhaps explains why my oncology team have been reluctant to let us go to France for the summer. It gets very hot here in the summer months, last month and this month the maximum temperature ranges between 40 and 50C so we like to escape to our little house in a village near Carcassonne S.W. France. When I have seen my doctors they have always told me if I get a fever, racing heart or breathlessness then go straight to hospital and tell them to call one of my doctors. I think now I know why as they are probably thinking sepsis! This also helps me a lot now as we have said the medical facilities in France are excellent so why cant we go and I can always have blood test or X-rays and send my oncology team the results but I got a NO we want you here to monitor you.

Out of interest is the importance of drinking enough water; during my problems I have also visited our family doctor who is a lovely lady and the first time I went she took one look at me and said I was "dry". I was immediately put on a drip and had 2 bottles of fluids intravenously into my body. She told me to come in anytime if I felt I needed fluids, Sandra has dragged me back twice and each time it makes me feel so much better.

Sleeping - I asked my doctors for help with that and they gave me Zanax, its not actually a sleeping pill but a pill to relax you; I found the best result taking one an hour before I went to bed and I slept well. In my career I have worked shift work and there were times I got overtired and would go to my doctor and explain and ask him for just a couple of pills. I would take one for 2 nights and that always sorted out my sleep pattern again. This is what I have done with Zanax, take a tablet for 2 nights then leave them alone as the doctors fear a reliance upon them. The steroids and the Tagrisso I take in the morning, which I think helps. 

With regard the radiation treatment, do you have to go and stay in hospital for this, or do you have the treatment and go home? Is your family close to offer support ? We have not spoken to anybody who has had radiation treatment so don't know how it affected them, although we have seen people at the clinic who are having radiation. Hope all goes well with your treatment and your not as wiped out as you are expecting to be. Looking forward to hearing of a good result.

Love and Hugs

Taffy_Dxb and SandraAnn

Hi Taffy and Sandra Ann,

Yup- I have to say I do agree with your Onc team- Sepsis can finish you off very quickly - so near to where they're treating you is pretty vital. When I got it the first time I just went into shivers for about 4 hours followed by the sweats, then I just felt like a drunk because (apparently) my blood pressure dropped to 60/30. I was rushed into intensive care and asked if I had a DNR by the ambulance team. Very scary stuff I can tell you. SO YES stay near to where you can get the  special treatment i.e. fluids/antibiotics etc.

Went for my first SABR or STBR yesterday and it was easy/peasy over in 30 mins, came home felt fine but tired but put it down to just being anxious about it all. Today- feeling a bit "wiped out" but fine. Have copious amount of steroids to take for 2 weeks plus off Tagrisso for this week. All in all feeling OK tho. This is a bit different from normal radiotherapy tho. I was referred to UCLH earlier & they wanted to do 2 weeks of radiotherapy (standard) BUT this one is precise and just a type of laser treatment. It is only to hit my "rogue" primary which has grown to 3cm BUT dear old Tagrisso is holding all the rest (multiple sites in my right lung and lymph nodes plus my liver).

I'm very hopeful. I truly hope you will feel that way when you get sorted on your 40mg regime. When I got my Gefitinb reduced I felt I'd got my life back Promise. Meanwhile I feel the longer I'm getting my cancer "held at bay" the more things are gonna be discovered. I also believe mind set is a lot to do with it. SO - all I can advise - get yourself a real "kick ass" attitude. Keep asking questions - never stop. It gives you a reason to keep going and also encourages the team to search out other options. Keep them on their toes is my feeling.

I think I gave SandraAnn my PM Friend link if you wanna look - or otherwise just Friend Request me. All the very best to you both

Love and Hugs

Diz xxx

Hi again,

It appears that I haven't got SandraAnn on friends list SO have sent you a Friend Request. All you have to do is click Accept and we can chat personally.

Love n Hugs

Diz xx

I just also realised that I hadn't answered your question re fluids - sorry

Fluid are SO important - that is one of the way our bodies flush our systems thru with all the muck of the drugs. Also if your blood pressure drops that is one of the first things they pump into you to bring it up.

In my case I reckon anything is fluids - hence vodka with fruit juice and water seems to fit the bill !! LOL - not sure they'd view it as such tho !!

Other friends I have love their beer - loads of fluid in those. BUT seriously I try to drink at least a couple of litres of water a day.

Hope that helps.

Love n Hugs

Diz xx

Dear Diz,

Really pleased to hear your SABR was less stressful than you were expecting and also "All in all feeling OK tho."

I would be interested to know what your dose of steroids is, I started on 30mg but I'm now down on 15mg. My lung specialist doctor says he doesn't like me being on steroids too long but once you start you have to wean yourself off, you cannot just stop. Apparently the body makes 8mg of steroids a day but stops if you start taking steroids orally so I would think you need to come down to 10 or even 5 mg before you stop. I have now been a week back on 40mg Tagrisso plus 15mg steroids and apart from a small decrease in my sleep I have no indication of my previous side effects when on 80mgs but it was 2 weeks from starting that I showed signs of a rash and had diarrhea.

I hope I'm not talking too soon but for the last 2 days I have woken up feeling normal! They took me off the Tagrisso when they saw how badly the rash was affecting me and an X-ray showed my lungs were inflamed. While taking the steroids to combat the inflammation I felt good and was told the steroids would do this but then a virus went round our family and this made me feel constantly very unwell. Well yesterday I woke to feeling human again and today again I'm good so hopefully the effects of the virus have left me at last and I wait to see how I will deal with the lower Tagrisso dose. I see Dr Shaheenah, my oncologist on Monday 30th and we'll see what she has to say. 

Both my sons are on leave with their families but would you believe we've already had some of their friends ring us to ask if everything is alright, its nice to feel looked after !

As regards mind set, I'm total OK with the situation; I think I'm very fortunate in believing I have a problem but the doctors will sort it out. I have had heart problems for years now but when things have got bad I've been able to lay back relax and let them get on with it  in total belief they will sort it out and the fact I'm writing this justifies my beliefs.

I'm 78 years old having led what I believe has been a very interesting and enjoyable life so I don't have the worries Sandra's "cancer buddy" may have, her husband is 46  with 2 children.

I'll let you know what happens with my oncologist appointment next Monday.

Lots of Love and Hugs

Taffy

Dear Taffy,

That's BRILLIANT to hear your update !!! Really really pleased for you both.

Thanks so much for posting this cos it gives hope to others too. Do so hope you continue to feel "on the up" - I had a similar "light bulb moment" when my Gefitinib was reduced by half - spent 6 hours gardening, which there was no way I could have done before.

I truly hope that scan results etc will also show that it is working.

re the steroids I'm on 30mg for 2 weeks along with Dexamethazone (another steroid) of 10mg each day i have the SABR. Usually steroids have me spring cleaning and generally bouncing off the walls BUT this time I am SHATTERED. Assuming it's the heat plus the treatment. Also i'm off Tagrisso for this week - scary stuff !! Just hoping the wondrous machine is doing the job on my "rogue".

Pleased to hear you have visitors too - you'll feel so much more able to deal with them whilst you're feeling better too I hope??!!. Good you have such a lot of support too along with your dear wife.

Wishing you all the very very best.

Love n hugs

Diz xxxx

Dear Diz

A quick update having seen my oncologist a few days ago; I'm now on my 15th day of taking the 40mg Tagrisso plus 15 mg steroids daily. Apart from sleeping rather restlessly I have no side effects and I'm feeling good. Following the effects of the 80mg Tagrisso and me catching a virus it is so good to feel "well" again. Perhaps my energy levels are still slightly down but we are now regularly going to the Malls (too hot to walk anywhere else in Dubai) and enjoying having a coffee and sticky bun together.

I see my team again on the 13th and I have blood test to do before that meeting but hopefully then they will decide whether we can travel to our little house in France and see our friends.

Hope things have gone well for you also, are you still having radiation treatment ?

Love and Best wishes

Taffy & Sandra

Dear Taffy & SandraAnn,

BRILLIANT to hear you're feeling somewhere near "normal" again !! SO very pleased to hear it - good news is really GOOD when we are dealing with the unknown huh??

I suppose the steroids alone may be making it difficult to sleep?? I used to set my alarm for 5am - get up and take the steroids & then get the best bit of sleep twixt then and 10am. Found that worked for me - may be worth a go??

Thanks for asking about the SABR - yup I'm all done - only the three long sessions on it. Feeling pretty tired (but that may well be the hot weather here) so just lapping up some sun in the garden and being a real lazy bat !! Any excuse huh??

Hopefully all continues to be better for you. Thank you again for the update. Thought I'd try and upload a photo of the wondrous SABR machine. Bit like a giant transformer the kids used to have !! The blue bit is the mould they made for me and you can see the hand grasps at the back. Pretty impressive huh??

Sending you both Love & (((hugs)))

Diz xxx

Hi again Diz,

Do you have to have another scan to see if the radiation has worked or can they tell from other methods like bloods for instance?

I wonder about my further progress ie will they scan me again ? I see my team again on 13th and we expect a decision on whether we can travel or not but we are expecting a positive reply as I'm now on day 20 of my half dose and, touch wood, no signs of side effects. To combat the insomnia I'm using a herbal tablet called Valerium and after a week it seems to be working as I'm very relaxed about sleep now instead of being so concerned when I could drop off.

As you say the difficulty is the unknown because whereas you can read so much about cancer you just never know exactly how it will react to you.

Keep taking the tablets

sending our love and hugs

Taffy & Sandra