Just to say hi

Traffic Warden · Posted: Sat Feb 09, 2008 7:01 pm Post subject: Just to say hi

Hi all,
i have recently been diagnosed (jan 7th) with 3cm tumour in right lung which has spread to tumour on spine with mets on hips/pelvis. Started as a backache late last year Rolling Eyes

and has of course become our nightmare. Currently had 5 X 20Gy radiotheraphy to spine tumour and are currently in period where the pressure on my nerves to the legs are starting to abate somewhat with more movement being allowed and found i have managed to exercise lightly again after a 2 month state of inability to move my legs well. i am 43 with a good fitness level and have found the past 8-10 weeks akin to being hit by a bus Shocked

. I have since the radiotheraphy gained some weight and small amount of muscle back to the affected areas and are due back for assessment in a couple of weeks. Does anyone have experiences of how well the radiotheraphy works and to what time scale i may expect any improvement? I have also been told that more radiotheraphy may be offered and also bone strengthening treatments could be used. Does anyone (or know anyone) who have similar conditions and could share their thoughts it would be appreciated greatly
I am also under the early stages of consultation(s) of treatment to primary cause to consider chemo/trial treatments etc but may ask another time if i may.

Many thanks Traffic Warden

pbj11 · Site Admin Joined: 12 May 2007 Posts: 796

Hi Traffic,

I'm sorry about your diagnosis, but it sounds like you are moving along in the right direction. They will probably give you a drug called Zometa to help prevent future bone mets.

My husband had two bone mets, but his were not painful and were just treated with the systemic chemotherapy. I have no answers for you on your particular radiation, but I know it whams you with a lot of fatigue for quite a while.

I wish you well on your journey.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Traffic Warden · Posted: Tue Feb 12, 2008 6:52 am Post subject: Re: Just to say hi

Hi pbj11,
thanks for your reply, since my post we have had consultation re chemo on treatment to my primary lung cancer and we are looking to embark on treatment with Carboplatin/Docetaxol (spelling) combination sooner rather than later as i generally still feel fit (ish) and well despite the obvious problems with tumour on L5. As you said they are looking to admin Zometa at same time to help with mets.
as per your late husband, i have NSCLC stage 4 and are looking to achieve as good as quality as life for as long as possible and am going into this fight with bucket loads of grit and determination along with a fantastic support for me and my family, i plan to kick it's arse before it gets me Smile

. My wife is a strong determined woman like yourself and i find your posts on here (as many others clearly do) a great help and inspiring.
i hope to continue to post on here as my battle against odds begins, and if i may will ask questions along the way.

Regardfs TW

In · Posted: Tue Feb 12, 2008 9:41 am Post subject: Re: Just to say hi

TW, Hi, sorry i haven't replied till now.

First I'm sorry for your nasty surprise. BUT good for you and your kick arse attitiude!!! I believe alot of recovery and healing is a state of mind- Being positive and strong is often such a positive way to kick butt.

It's great you have the love and support that you need. Keep your chin up, no doubt there will be some hard times along the way. Feel free to rant and rave when you need to, as well as updating and asking questions.

Take Care and keep the kick arse attitude up. Wink

_________________
Thinking of you Inica

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Tera · Experienced user Joined: 31 Dec 2007 Posts: 99

TW, good for you. I too am sorry to hear about your diagnosis but keep your chin up and fight the good fight. You and others are such an inspiration to me. Wink

You might want to encourage your wife to come on board for the support from other caregivers. I took care of my Mom. There may be times when us caregivers can be a little overwhelming and it is ok to let us know that so you can be given the space you need. Just remember that what affects you does affect your wife too. As long as the communication channels are open between you both, you will be fine. In fact, it will probably draw you even closer together. While I miss my mom terribly, I am honored she let me care for her and i think we bonded even more.

frankleigh · New User Joined: 31 Jan 2008 Posts: 2

Hi Traffic (sounds like the UK)
Similar sad story here other than age as I am 68. Late diagnosis because of extreme hip pain led to dscovery of a lesion on my spine muscle and then to a 5cm tunor in lower left lung - thus stage 4 with no prior symptoms. Heretofore I was fit, energetic, and healthy. Subsequent testing shows cancer still confined to lung and muscle on spine. I also discovered that having metastatic lung cancer to a muscle is extremely extremely rare, but sadly other than being a medical curiosity, there is no prize. Hip pain started in Sept 07, then a round of physio, cortisone for bursitis, chiropractic and finally in Nov an MRI showed the lesion etc. It seems it then took an eternity for all the tests and scans to follow and I finally got my first (1 of 10) radiation treatment yesterday 12 Feb. This will be followed by chemo like yours. Some nausea followed the rad treatment and a bit of tiredness.
I'll let you know how the next sessions go
Frank

Traffic Warden · Posted: Wed Feb 13, 2008 9:47 am Post subject: Re: Just to say hi

Hi again,
updated profile, am a brit from south East, have a blue badge now Very Happy

hence the traffic warden link, never thought i'd end up this maligned just to get one over on those wonderful officious folk who hand out parking tickets Rolling Eyes

, still it's a very much a british thing.
In/Tera .. thank's for your replies, i'm determined to stay positive through this in any way i can. My wife , as correctly summised, is taking on a caring role and just as you stated to understate her importance would be folly . We are indeed already close and although i must allow myself space at times, i also feel strongly that she will need her own avenue away from the situation too. Our fantastic daughters and friends will ensure that Very Happy

Frank, your situation sounds similar, going from being very active to having dull aches and then onto the ultimate blow. Like yourself, we had to force the issue with the scans (ending up paying privately for early MRI) before they got their butt in gear. Since then to be fair, once i was in the 'system' , so to speak, things moved quickly.
Have had reasonable success via Radiotheraphy (completed 2 weeks ago) and hopefully will continue to work for another fortnight before it is reviewed. Wasn't too bad with nausea, bit did get a bit tired around 3-5 days following end of sessions. Have increased movement to my legs, in such over the past week or so, have been swimming 3 times and done light muscle strenghting exercises back in the gym under a watchful eye. Even managed to cycle around 2 miles (very gingerly!!) with my family last weekend which was a bit of a milestone. For me keeping my mobility gives me extra encouragement to enter the chemo treatments with added vigour. I ended up losing a fair bit of weight (mainly around hips, buttocks etc) over 2 months prior to diagnosis (74 kilos down to 63 Kilos) and i felt getting weight and muscle mass back on was key to not just my physical but mental well being. i have not long (1 hour ago) weighed back in at 69 kilos. It's amazing what tons of good food, severe excess snacking (a personal thanks to the likes of Ben and Jerry's ice cream co. mixed with copious mixed nuts and raisins ,yoghurt coated helps Very Happy

) plus moderate doses of dexamethazone can do for you Wink

Frank, i hope the rad treatment works well and please keep me posted on your planned chemo as it sounds like they may offer similar combinations as myself. We are going to pre-amble meeting ref chemo on friday so i can guess i may begin towards the middle of next week and will certainly pass across my experiences when and where i can.
Thanks again to all your replies and caring words Very Happy

ps. just a footnote to say have been experimenting (as per advice my good lady Very Happy

) with Vitamin E for night sweats and have to say as i have started to build up the dose, and although they are not completly eliminated have been happy with the results, has anyone else come across this before ?

pbj11 · Site Admin Joined: 12 May 2007 Posts: 796

Traffic,

Be careful with the Vitamin E. Night sweats can and do occur with lung cancer and some of the different chemo agents.

A good site to check out supplements, etc. is Memorial Sloan-Kettering.
http://www.mskcc.org/mskcc/html/11570.cfm

Please don't experiment and run EVERYTHING you take by your doctor to make sure there are no drug interactions with chemo.

...and welcome to the wonderful world of menopause! Shocked

Now you know how millions of women feel. Wink

PBJ <ducking>
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Traffic Warden · Posted: Wed Feb 13, 2008 5:03 pm Post subject: Re: Just to say hi

Hi pbj,
thanks for advice on that, fortunately checked out Vit E with my GP, who is a good 'un (i know, getting rarer these days Rolling Eyes

), will also double check all doses of medication with oncologist before chemo starts. saw program last night 'medicine men go wild' where one village's answer to all ails was to burn a different type of ants nest Shocked

, haven't gone down that route of experimenting yet Wink

.... cheers for the welcome to the menopause Very Happy

.... oh well in for a penny ....

Take care TW Smile

Traffic Warden · Posted: Sat Feb 16, 2008 6:10 pm Post subject: Re: Just to say hi

Hi all,
quick update if i may, start 1st cycle chemo on tuesday .. Carboplatin/Taxol combi as expected .. Zometa also due to my bone mets. Increasing steroids from monday for 3 days (i can presume is normal ?) from 4mg (dexamethazone) twice daily to 8mg . Have also been suggested to take anti sickness (Ondansitron) for 2 days after but have heard advisable for perhaps a week as precaution. Enter with part nervous trepidation but am positive though ... take the fight to the beast as so to speak.. i feel it is the right time Smile

... if not boring the butts outta everyone ... i would like to update where i can as your invaluable experience on this forum and kind words have added along with my throng of well wishers to stay hopeful and determined. As Tera's post my wife may choose a time to post as my carer through this .... as well as being my mainstay and soulmate .. she's very brave Very Happy

dewey · Regular Joined: 21 Dec 2007 Posts: 21

Hey Traffic Warden,
Just wanted to check and see how you were doing...Hope all is well after your first treatment.

Traffic Warden · Posted: Thu Feb 21, 2008 5:19 pm Post subject: Re: Just to say hi

Hi dewey,
not doing too bad at moment, touch wood no nausea thus far and am still eating well. Have been v.tired though, tingly hands and feet (now end of day 3 since Carbo/Taxol combi) . Caught out this morning with excess pain to joints , legs especially!! increased oralmorph to cover but was v. uncomfy for a while, checked with chemo ward and got GP to come outand check over for excess swelling but was content to accept was possible side effect from Taxol. Will hopefully sleep well and morning hopefully now managed by increase in mst tonight and a.m. Still positive through day by day approach Very Happy

Regards to all TW

pbj11 · Site Admin Joined: 12 May 2007 Posts: 796

Hi Traffic,

Please accept my apologies for not responding before you had the chemo! I read your post, meant to get back, and well... my mind drifts a lot lately! Embarassed

I know how frightening that first chemo can be -- the BIG unknown. Well, you've got that under your belt now, so you know what to expect. Long day huh?

Sounds like you are having peripheral neuropathy, which is caused mostly from the carbo, but taxol can also help that along. Our oncologist (NOT a vitamin freak in the least) recommended that my husband take vitamin B-6 up to 600 mgs. per day to help ward off that issue. (The less the better because it does have some anti-oxidant properties that can undercut the effectiveness of the chemo.) Neuropathy can become a huge issue and can knock you off this regimen if it isn't kept under control. Some people also take B-12 too. Check any supplements out with your Oncologist and please call and keep them apprised of this development. I hope this is a transient thing for you that will go away. There are also prescription meds that help. We never had to go that route, my husband didn't have any neuropathy, but we've seen many others get whammed with it.

Probably best to stay on the anti-nausea for something like 5 days post-chemo until you get a feel for whether nausea will even be an issue for you.

Hope things perk up for you soon fatigue wise. This usually passes within several days of the onset of side effects.

Good luck! We're pulling for you.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Traffic Warden · Posted: Fri Feb 22, 2008 8:53 am Post subject: Re: Just to say hi

Hi pbj,
hey, no need to apologise, i appreciate any thoughts anytime Very Happy

... thanks for thoughts on B vits, on reflection only really had a wee bit of tingling and has since gone, possibly from the fact i spent most of the 4 + hours or so in same position at chemo treatment Rolling Eyes

, my own fault really cos as you know it's easy enough to walk around a bit but i get a bit paranoid when i have a canular attached as if the slightest movement will rip my arm off Very Happy

..... "Don't go near my Canular" .... just a me thing thing, i'm sure i'll get used to it Smile

. Was a long day though for both of us though, probably more for my wife than me.
as you said will look at continuing Ondansitron for an extra day or so to be sure .... prevent rather than cure on this one has been suggested by a number of people including nurses etc

fatigue definitely better than yesyerday and haven't felt need to rest all day so hopefully that will pass. mst dosage increase did the trick re- sleeping and early morning achiness, managed to get up and help with breakfast this morning, so giving my dearest a well deserved break, makes me feel better if i can do little bits where i can Very Happy

again, thanks for all your support and tips etc

Take care TW

Traffic Warden · Posted: Thu Feb 28, 2008 10:12 am Post subject: Re: Just to say hi

hi all,
just a quick update as on day 10/11 of carbo/taxol regime. Have had increased aches pains to joints (ankles,hips etc). Went to oncology unit tuesday and probably by own admission, administrated too much taxol on 1st treratment thus the symptoms. Although eventually controlled by increase in mst dosage, it still hurts when it catches you out Shocked

. As chemo filters out of system , pain should decrease and they are looking to decease taxol by 15-20 % on 2nd one . They go by weight/height measurement system on dosage .
Otherwise feeling ok, eating well, not over excessively as pre chemo but 3 decent meals a day plus snacking Very Happy

, tastes not changed much, still crave fruit etc so i haven't got too much to complain about. Been using decent mouthwash over last ten days to avoid mouth probs or ulcers and aside from dry mouth then that side is good . Have noticed , although not nosebleeds, inside of nostrils quite sensitive, slight bleeding on blowing, but i gather this can be normal.
Will delay 2nd chemo due to overdose on taxol and we are due to go away for a week anyhow before then so looking forward to that Very Happy

.. gotta fit some enjoyment into this chaos somehow, so hoping pain levels out before then, i'm sure thay will ...... otherwise still got me' "kick it's attitude"

Take care and regards to all have fought, are fighting and have a battle to come TW

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