Just to say hi

brainman · Posted: Thu Feb 28, 2008 3:39 pm Post subject: Re: Just to say hi

TW, it is great to hear your positive attitude Smile

. So sorry about the side effects of the chemo (especially the overdoes part Shocked

). I am glad that you are taking time for some fun. We all need some time off occasionally... even if it is just a walk in the park.

I am also glad that so many others have reached out to you Smile

.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 803

Hi TW,

Yow!! What idiot mixed your meds? I can't believe someone screwed up the calculation. There is no excuse for that. I'm sorry that happened to you. Truth be told, many people do get aches and pains from the chemo, also from blood enhancers. It's different for everyone.

Good to hear you are eating well. That's great news. Also great is sneaking away for a little break. Very Happy

Grab the gusto in life -- that's the attitude!

Nose bleeds are fairly common. Also blurry vision for a few days after infusion and runny nose and eyes. You can have some or none of those side-effects. Chemo is weird, wild stuff.

Take care and have a good time. You can probably look up the calculation for your ht/wt online so you can check your chemo bags. I always checked.

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: Sun Mar 02, 2008 7:23 am Post subject: Re: Just to say hi

Hi pbj,
will have a look at that ht/wght chart before next treatment, is there a link anywhere? i have looked at cancerbackup site etc but can't find anything. Definitely has been different pain to original sites where i know i have liesons etc, so must be something to do with the chemo, like you say it's weird and wild stuff Shocked

, still i've heard folk in a lot worse state so i shouldn't complain too much. Got a day or so before we have a break so will rest up now as in middle of projected 'low immune stage' and am feeling a bit whacked out Confused

Cheers TW

pbj11 · Site Admin Joined: 12 May 2007 Posts: 803

TW,

I think you can find that info on the mfg. websites in their lengthy medical enclosures written for doctors. I never checked the calculation, because they had it right. I merely checked each time to see that the mg. amount was right. My husband had some infusions at the hospital and they didn't match what the doctor's office had been giving and I freaked out. Apparently the hospital rounds off the numbers in the calculations. Embarassed

It may be that the chemo is shrinking those puppies and pulling them away from whatever they are attached to. That would be great news!

Make sure you are careful about touching anything outside of your own "cootie" environment during the low WBC phase. Keep your hands clean, carry gel antibacterial stuff with you, and don't touch your face. (Gee, this is a familiar mantra from me to my husband!) I never let him open a door or push an elevator button after he was diagnosed.

Good luck and I hope you get to feeling better soon.

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 Mar 07, 2008 3:12 pm Post subject: Re: Just to say hi

Hi all,
back from 4 day break at centreparcs with family plus bruv in law family, great time, could join in stuff when possible otherwise relax in nice surroundings, no pressure, comfy accomodation. Think the fresh air did me good rather than be couped up at home. Hot tubs were good as i could manage some movement in my legs while they are still recovering from effects of chemo (prob the taxol). Onocology nurses did say i was more at risk from myself than to avoid all human lifeforms , so the option of the forest break probably gave me best of both worlds and could enjoy watching the fam and kids do stuff, it took all of our minds off the bloody disease for a change. Like i say, physically, of course, it's got the upper hand and will win the war ...... but mentally ? Stuff it i'll stick this curse on it's butt for as long as possible .... more holiday breaks and fun will come where feasable ...
As for the swelling problems i've been experiencing, i'd love to think the chemo's doing something, 'ripping the puppies off and chewing 'em up' ... i like the thought of that , time will tell i suppose, i do start to feel slightly different as come to day 18/19 now with wbc estimated to be coming back up now although as per previous post the taxol dosage may be slowing this down. Have had a water type retention to left leg which just needs rest this weekend before meeting with big cheese (my oncologist) , so will be good (not easy cos' i'm a bugger for doing things iuf i can). Pain residing to general joint pain now with residuals of original discomfort associated with spinal/hip cancer ..... who knows? this chemo's a wild big surfing wave like you say, so it's difficult to pinpoint what's affecting what if you see what i mean , i expect it will all come out in the wash Rolling Eyes

Still expect a delay in 2nd treatment though so may have another week to recover and assess
Otherwise, still eating like a bit of a pig, and if anything probably carrying a bit too much weight for the swollen ankles Shocked

.... can being a bit of a 'chemo fat boy' be a bad thing Question

.... back up to near 75kg (pre diagnosis weight) from 63 kg low .... just love the food i suppose Smile

Tara for now, TW

brainman · Posted: Fri Mar 07, 2008 4:18 pm Post subject: Re: Just to say hi

TW, it sounds like you had a very good break from it all... the hot tub sounds nice Very Happy

.

The swollen ankles might be due to many things... some of them quite dangerous (life threatening). Has your medical team evaluated this problem and told you had as causing the swelling?

Take care.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Traffic Warden · Posted: Sat Mar 08, 2008 9:36 am Post subject: Re: Just to say hi

Hi brainman,
yes thanks for that, we contacted my nurse on route home last night as it was approaching weekend (calamaties always happen at weekends it seems) , confirmed there was water being held at ankles and has gone down since, sitting up has been causing some swelling this past week and this ties in with what the oncologist told us before we went away. (effect of too much taxol and it is taking that few extra days to drain out of system), and like we say i am in to see the big cheese in 36 hrs where they can assess this 1st traetment.
appreciate all views though as this chemo's a strange old game and appears to have countless avenues of effect etc , so all comments encouraging or scary are taken on board

Thanks Very Happy

pbj11 · Site Admin Joined: 12 May 2007 Posts: 803

Hi TW,

Glad you were able to have a nice holiday and enjoy some down time.

Hopefully the swelling will subside. Are you drinking enough fluids? Hydration is important, although in light of the swelling, it's good that you have a visit with the doc soon.

Chemo manifests itself in so many different ways for every different body. Just when you think you know what it will do, it switches up on you and does something different.

Sounds like so far, so good though. I wonder if he'll check your liver enzymes. You don't have any pain in the swollen leg, do you? Blood clots are a problem in lung cancer, so watch for any pain or tenderness in your lower extremities.

My husband had significant swelling problems on Taxotere, which is a cousin of Taxol. He had to go off of it eventually due to the water retention, but the swelling usually happens upon long term use of this particular drug. Lot's of Lasix and time helped ease his 30 lb. weight gain from fluid retention.

Are they giving you blood enhancers to help your counts?

Hopes for more strength and good news.

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: Sun Mar 09, 2008 6:07 am Post subject: Re: Just to say hi

Hi pbj,
will speak tomorrow ref blood enhancers, liver enzymes etc , thanks for pointing that out Smile

swelling had not been painful and do keep well hydrated so i'm not over concerned although it would be nice to be more mobile, will expect them to do bloods to check wbc in a view to book in 2nd treatment, would blood enhancers speed up wbc process enough ? i don't know wether they plan for my wbc to increase naturally or not but i shall ask the questions anyway.

Will update once sure , take care and thanks for replies, TW Very Happy

Traffic Warden · Posted: Mon Mar 10, 2008 4:46 pm Post subject: Re: Just to say hi

Hi all,
back from a mad day at hospital today. Day started with continuing enlargement of swelling to upper right leg, although no pain and district nurse had indicated just water retention ! we were glad to be there today. Oncologist looked at leg and confirmed that this was no water retention and requested urgent ultra sound. Due to lack of radiologist in right place at right time, the 'urgent' took 3 hrs Rolling Eyes

, but he confirmed i had DVT !! , great stuff hey Exclamation

... not the best news in the world but at least immediate action could be administered. My wonderful good lady (and myself if i can) will be trained in the art of a quick subcutaneous injection everyday Smile

. thanks for the comments regarding the swelling it just goes to show a great deal can be learned from people who have been through this rollercoaster on a personal basis rather than the 'supposed' medical trained.
did speak to oncologist regarding blood enhancers and he didn't really see the relevance , but any information would be gratefully recieved Smile

, otherwise will be starting next bash of chemo in 2 weeks as per agreed delay and hopefully will continue in same vain

Take care and thanks again for everyone's support and comments Very Happy

TW

pbj11 · Site Admin Joined: 12 May 2007 Posts: 803

TW,

Oh boy -- a clot is NOT what you wanted, was it? Luckily they caught the bugger before it broke away. Whew! (Of course you have to be the weird one with no pain associated with the clot TW! Shocked

) Be a good boy now, because your "lady" is in control of that needle! Laughing

Hopefully this will dissolve quickly. Sounds like you're going to be needing blood thinners from now on with this development, but that's not uncommon with LC. We were told that my husband shouldn't sit with any compression on his legs, like crossing ankles or legs in his easy chair, and to move about frequently to keep circulation moving. If we had a long car ride, we'd stop and he would get out and walk around for a few minutes to help prevent problems. Just a suggestion. He also had a congenital clotting disorder that put him at an even higher risk for clotting, so we were pretty careful about that stuff.

It may be that with only one chemo under your belt your bone marrow will replenish your WBC and Hemoglobin counts on their own. There are no drugs to stimulate platelet production, only platelet transfusions. My husband went through 13 doublets before he needed any "outside" help for his counts. There are defined thresholds for when they will give chemo according to the counts, but the oncologists have a little wiggle room depending on each patient's ability to bounce back from a prior cycle.

There is also a threshold where blood enhancers should not be used and there have been a lot of revisions in the use guidelines lately in the U.S. because they were being overused and I guess problems arose from that. If your counts are too low, they will either postpone chemo for a week or so or they will utilize some type of enhancer. Procrit & Aranesp are typically used here to boost the hemoglobin counts and Neulasta & Neupogen are for the WBC. These all take several days to few weeks to grab hold and begin working. Being in a nationalized healthcare system in the U.K. may add another dimension to how these are utilized.

So very glad that clot was caught and best wishes on your next cycle.

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: Thu Mar 13, 2008 5:44 pm Post subject: Re: Just to say hi

Hi there,
yes the blot clots are a bit of a bitch, but better to be sure about than not Smile

, my wonderful partner has now become even more wonderful than before , or is that beacause she is in control of a needle every day Laughing

... you're right though pbj , bloody typical of me to get this but hey ... path the course and all that , the injections aren't too bad and i think they hurt her more than me and they have said would review possibly to tablets after the first month so we shall see.
Swelling looks under control through the Tinzaparine and pressure stockings are doing business also (not on the romantic side, but hey Rolling Eyes

)
next chemo due noe 26th due to this and another small holiday break (naughty i know but sod it !!)

Tke care all TW Laughing

pbj11 · Site Admin Joined: 12 May 2007 Posts: 803

Hey TW,

Regarding the holiday --- I say grab the gusto in life!

Glad that the swelling is being controlled.

Thanks for the update and, as always, my best to 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

koikkeril · Senior User Joined: 29 Jul 2007 Posts: 149

Hi Trafficwarden
Great to hear your positive attitude to all this, its good to lift our spirits with this long journey ahead. So great your getting away. I am sorry i havent written earlier, but you, like us we also escape when we can. Prayers and thoughts are with you, God Bless.

Traffic Warden · Posted: Sun Mar 23, 2008 4:32 pm Post subject: Re: Just to say hi

Hi again all,
back from jolly jaunt away, they didn't really recommend i flew anywhere, but stuff 'em the Tinzaparin kept things at bay but also felt we needed to have time together (also joined by other good friends which was fab Very Happy

) before i get whammed on wednesday and then will be into i suppose the deciding stages of the treatment (5 more at 21 days intervals), hope i can keep stable through this and not give my wonderful family/friends any grief.

Take care all TW Laughing

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