Re febrile neutropenia ... round two

viking1

I had to go into hospital after I developed a high temp (39.9) after chemo 3 .... right at the end of the 3 week cycle. I was on FEC for the first 3 chemos and until then had felt really on top of things after my steroid dose was reduced to just 8mg with the subsequent 2 chemos. The steroids give me agitated depression .... which I have a history of. After 7 days in hospital I was discharged...no bacteria or virus apparent.  After chemo 4 I started on a new round of three treatments (my last ones).  Docetaxil sp? and Herceptin.  I was only okay for a week and had to go back to hospital with a temp of 39.1 for 6 days.  Neutropenia again, though this time they heard a crackle in my lungs and was diagnosed with pneumonia, even tho chest xrays were okay. 24 hours after chemo 4 I self injected the med that is supposed to help prevent you from developing neutropenia.  I experienced bad leg/knee pain but this could also be the Docetaxil.  The Drs said without the injection I would have been worse.
On chemo 3 after being in hospital I was diagnosed with deep vein thrombosis in my left calf and a pulmonary embolism in my right lung. Then came chemo 4 and the pneumonia, which honestly I hardly felt. I had been complaining about leg cramps and chest pain and a cough since commencing chemo ... for 9 weeks but it was ascribed to the chemo. It wasn't till hospitalisation at a different closer hospital that they found the blood clots.  So please make a louder noise than I did about side effects.  As a result I have to inject my tummy with Fragmen, an anticoagulant for the next 6 months.  I will inject my herceptin into my leg as my veins are sick of coping.
I guess I am now in a place where I went from being on a high, eating well, exercising, meditating ... to feeling scared of my next two chemos.  Only two to go but what if???? The chemo seems to be slowly breaking me down, if not physically then psychologically. My first stay in hospital was okay and novel but exhausting. My family didn't visit as scared of catching something. Same as second stay where I found myself just wanting to go home. Pastoral care and the social workers were good.  Now I have read that radiation can also cause neutropenia ... I have if after a 4 week break after chemo 6.  For 3-6 weeks.  
I am also in constant pain under my left arm pit from the total axillary clearance scar.  The Dr prescribed a small dose of Lyrica for neuropathy.
So I am wondering how everyone copes with these set backs and any ideas you may have...in a bit of a hole after feeling really well. I just hate the thought of going into hospital again despite it being very comfy...I am so tired and just can't see the finish line if radiation is going to cause neutropenia too. Sorry to be 'poor me' when I know a lot of people are struggling. xxx

Zoffiel

Hang in there. It's awful when everything goes shit shaped and you feel you can barely keep your head above water. I'm sorry you've had such a rough time, it really doesn't seem fair when you are trying so hard.
If you need extra time before rads, ask for another week. I'd be surprised if they say no. Another week may give you a mental holiday that makes you feel like you've stepped away from the whole mess for a couple of days. I had to take extra time even though it meant stringing the whole performance out for an extra week. I was so shagged I just couldn't face going straight from one to the other.

 It is surprising how much you can bounce back in a relatively short time anyway--though from personal experience it's never quite enough when you just want your life back.

The axilla pain is the pits (pardon the pun) Lyrica does work and it will help you sleep as well. Even if it does mean taking more bloody pills. Good luck, Marg xxx

SoldierCrab

@viking1
Chemo can really zap you..... my supposed 6months of chemo turned into over nine months due to my allergic reactions to it....
I juiced and made sure I rested because our body needs to deal with toxic drugs.
You are struggling with each onslaught of chemo, there is no need for saying sorry, its bloody hard going....
Only 2 to go...........
Breathe let it go........ 
I found petrea king cds good to help let go of all the angst of treatment.....

I'm 5 years since diagnosis  want encourage you I was very scared of the what ifs as each chemo had to be stopped due to allergic reactions.... but I can happily say I'm cancer free now....

Allow the fears frustrations to come up acknowledge them then let them go....

We accept venting and crying we get it
hugs soldiercrab

AllyJay

@viking1Firstly, sending a hug ((hug)). I spent a total of 56 days in hospital during my first 12 week cycle of chemo. Febrile neutropenia each time, with all the checks for infection as well. Rashes, chest infections, anaemia needing two units of blood, every test you can imagine. Also had the injection after cycle two, three and four, but still was affected, but was told that it doesn't prevent neutropenia, it just reduces the time it takes for the neutrophils to bounce back. I looked at it this way, if all my good cells were getting blasted then so were the bad ones. A bit like civilian casualties in a terrorist war. Co lateral damage they call it. So long as the end result is the elimination of the f***ers which are trying to kill you, unfortunate but necessary. If little old me could see it through, you can too. Be prepared and have a bag packed with good tea, coffee and anything you fancy nibbling on. Pack your own nighties, or you'll end up with "hubbies choice". Put in your knitting or kindle or magazines. Be prepared, you're at war, and I'll be here sending you emotional care packages.

viking1

Thank you for writing back ladies. You have all certainly done it tough.  56 days @AllyJay! I am so glad you beat it. @SOL I will look up that person and try some juicing as tongue and throat are still burning. @Zoffiel a great idea ... I keep forgetting I can say NO. One free week with no dr appointments would be great.  I do wish I had a partner to assist. Am living in a studio flat above my dad's house with other relatives residing. Dad is lovely but I do need to sort everything out for myself. I made an appoint. with my psych today as realising how much living in a pretty toxic environment weighs on me besides the treatments. This is not really the forum for this but to give an idea, I was away three weeks, one in hospital and two with a friend post chemo. I came home to find all our family photos of my deceased mum and grandparents had disappeared.  My sister and I were to go through things together and share items dad didn't want as we are supposed to be downsizing (for pasf 8 years!).  This was really upsetting and I tried to establish communication cordially by text as we don't speak but nothing came of it.  Now I am scared of being hospitalised again an coming home to find the china packed up!  These are just sentimental items but we originally decided nothing would be packed without consultation. I couldn't believe it. Do you think that in the end it is healthier to let go and just remember my darling relatives who I was close to...or argue the toss because they are items they loved? I think I am feeling attached to these pictures and items as they are the closest link I have to being loved back then.  Now I have my dad who doesn't like any confrontation and a sister who told me the chemo and rad would kill me anyway when I told her of my diagnosis...and said she would not be able to support me in any way. I don't need support from her, but saying hello in the morning would be nice. Some ppl say family members react with anger sometimes and this may be the case here, but it is anger about slowing down the selling process and moving to the country that is the issue seeing as my treatment has delayed things. Letting go of everything is starting to feel the only way out of fighting fr my health and worrying where the bloody good dinner service is!  Is it possible to do? xxx

June1952

Hi @viking1
OMG - what a fantastic family you have (not) - and I thought I was doing it tough at times.  Luckily I did not have to go the chemo route but some support would have been great, even though my issues were not as bad as yours.
I do agree that it is best to try to let go of the material things and sit back and laugh as the memories you have is something they can never take away from you.
Over time perhaps some items may find their way back to you.  Unfortunately at the moment the anger (and fear of losing you) of family members is making them all go the wrong direction - and it is their loss.
Remember that sometimes having a partner is worse than going it alone !
You are in my thoughts.
Keep your sense of humour if you can.
Summer  

Mira

Hey Viking, I don't have any advice for you re the neutropenia.  But relatives who react badly is right in my arena!  My Mum actually told me off for being upset that she was telling people when I had asked her not to yet!  She stood there cool as a cucumber and told me off for being upset about it.   She told everyone, including people that I had asked her not to tell as I wanted to talk to them privately.

You can't control your sister or family, focus on yourself for the moment.  You need you!  Sending lots of love. 

primek

Oh you really have had a revolting time. But you will get through this and if your Drs think unsafe well they will stop. I do hope your next cycle is better. Claratyne can appatently help with the bone pain caused by the post chemo injection to boost white cells.

My only advise is to just plan you might go in. Have a bag packed. Books to read etc. My experience is if you do ...all well. Haha. But if you need to go in you will do so prepared and feel less stressed about it. 

Take care. Kath x

viking1

@Summerhill38 I did have a good laugh at your first comment because it is actually what the situation is. My dad is very supportive but will do anything for a quiet life, including ignoring some really horrible family behaviour. He thinks I am like my mum and stronger so tries to placate sister. I can't say her reaction is fear of losing me but more inability to give up her live in bf who is just 28 years younger and has wandering hands which I experienced on my first night back from my first chemo. I told dad and sister but bf remains in house.  We are all not on speaking terms. So I felt and feel quite vulnerable though I  put a sharp stop to it but if anything occurs again I will call the police. I spoke with a psych who said the whistleblower doesn't usually fare well ... the occurrence was put down to that he had flu and was delirious! My psych thought that was fairly imaginative! So more to do with sister refusing to accept losing bf and saying this was a storm in a teacup (involving my back and backside!). I am 52 and she is 50 so as an ex teacher I can't see the bf as as a fully grown man - more a Year 12 student. Which makes me accept that he could be silly enough to try this but sad that you would lack the compassion/morals/decency/respect for gf even tho running on testosterone. So whilst we were a nice middle class family when mum was alive, we seem to be heading towards an 8 Mile Eminem trailor flick now! I take heart in what you said about things might eventually come back to me or I will have access to them, and to concentrate on the non material. I just wish I didn't have to deal with this pretty disgusting behaviour now. Thank you Summer...it is comforting to know other people have family issues too. This week I am going to a BCNWA resilience training day!!! I :-#@)-; need it, pardon my French! It's timely! xxx Thinking of you.

viking1

@primek Hi Kath, I will pack and be ready as you say! Good advice. My psych suggested a week off to feel better both physically and emotionally, which I decided today I will ask for. She said to ask about the ramifications overall of one week off. I think if I do more walks and go to the beach like I did today I can tolerate another bout of hospital and neutropenia if it happens. It's just too much psychologically more so if I have to go in again. I keep forgetting about the physical toll on the body, which the psych said to take into account. I keep forgetting I have a choice in the matter. I am keen on hearing claratyne works for bone pain! They gave me loratadine but said it was for rash... so I didn't use it as had none! I think they are pretty similar so will def use as that bone pain is horrid. Hope you are doing well Kath and thank you! xxx

Zoffiel

The Claratyne (Loratadine) can be really helpful. I had Neulasta shots for my last two chemos ten years ago and couldn't understand WTF had happened when I went from taking two days off after chemo then going back to work to spending 5 days on the floor in the lounge room floor  unable to walk. No-one warned me that could happen.

This time the same thing happened after my first round this year so I did some research and started taking Claratyne the day before chemo and continued for five days. It worked. I still got some nasty twinges in my sacrum on day 4-5 but nothing like the debilitating pain I'd had before. It's standard practice in some places so I can not understand why it isn't offered to everyone. My onc was fine with it, but hadn't recommended it because he thought bone pain was a rare event. Not from what I'm hearing now.

I think the bone pain from the boosters is underreported and, like many side effects, isn't given proper consideration. The Claratyne reduces what is called bone oedema. There have been some trials run in the UK--the results were inconclusive so perhaps that's why the process isn't widely adopted. There are no contraindications as far as I can find out, so it is well worth taking it. Marg

viking1

@Zoffiel that is really interesting and useful, thank you! I was distinctly told by the Reg. it was for the side effect of rashes with this new and last 3 rounds of Docetaxil sp?and Herceptin (commencement) and take if required. Then 24 hours later after giving myself the shot to help prevent the neutropenia I felt awful pain from the knees down and then the sacral area. I kept getting into a hot epson salts bath...know it's not good re drying skin but thought it would help. The agitation was also awful.Tried panadol and moved on to the one with codeine but it wasn't much chop. The neutropenia 'preventative' was spoken of a some kind of wonder drug so I wasn't expecting to feel like I was actually growing the white cells myself, one at a time.  Is that the same as Neulasta shots Marg?  I am going to follow your regime.  It's a bugger that the Loratadine isn't on script. I might even change to claratyne and see if it stops my nose running.  Has been like a dripping tap since day 1 chemo. So the day before and 5 days after. Did you find any other painkillers worked? Personally, even on a low dose of oxy in hospital, I found little relief. The only time I had total pain relief was after my total axillary clearance when offered a shot of hydromorphine. Apparently it was available to me on my chart all my stay but I just kept having panadol and then complained it wasn't doing much. The nurse said, oh, well, you can have this! I thought it would make me silly as a 'hard' drug but it just took the pain away. The nurse said it only makes you silly and high if you use it recreationally.  Interesting to know, though I don't know of any recreation shops here selling it!

Zoffiel

Loratadine is Claratyne, so just take that and yes, the day after tummy shot is Neulasta.  It only casts a dollar a day which cynical me thinks may contribute to the lack of research into it. I know exactly what you mean about feeling like you were growing individual white cells, (which then had to be squeezed out of the bone into the rest of your body) Horrible!

As for other pain relief, I have a great affinity for opiates--both real and synthetic--so will happily take them whenever they are offered. I figure they aren't going to give me enough to develop a habit at this stage. That said, apart from the bone pain TC gave me terrible muscle pain and vile headaches in the first couple of days which the Claratyne didn't touch . I just wanted Heroine. That would have fixed it--nicely high and sleep all day. No such luck and probably just as well. I was also taking a cannabis oil tincture at night to help with nausea--that helped with pain in general by relaxing my body but, unfortunately, cannabis gives me anxiety attacks so I was limited in how much I was willing to take. That was definitely not a recreational experience but it did stop the heaving without setting my bowels into a tube of concrete!

Anyway, keep going, the finish line is in sight. You'll figure it all out just as you get to stop doing it. Isn't that always the way? Mx