PET/CT results

NEDbound

I had my PET/CT on Wed.  I asked for a CD of the study and looked at it Wed night.  There were three concerning sites to me.  Nothing in liver or lungs.  But two bright spots in my pelvis and one by my spine just above the diaphragm. (I am in the medical field)  Anyway, I got the results yesterday and they say it is negative!!  They say the bright spots are my ovary, and normal physiologic uptake of the tracer.  I am going to MD Anderson on the 6th for a second opinion and will show them the PET/CT, of course, for a second opinion.  But riding high right now that I might really stay stage IIIc for a minute, anyway!

Plans for chemo in a couple of weeks.  Hoping to work through it.  Anyone have tips on combating symptoms of chemo?

NewHere

Chemo

Anyone have tips on combating symptoms of chemo?

Yeah, don't start chemo  (Sorry could not resist)

Anyway, great news on the scans.  As to chemo, people have different reactions.  Mine was somewhat mild, had each thing happen that could happen, but never the same from week to week for the most part, with the neuropathy and tired being the big ones.  (Think I listed a bunch if you click on my profile, I added things to some degree as I went along.)

I was pretty much not eating and worst during first week, then felt better during the second week (two week cycles).  During the bad weeks i would eat whatever worked to try to maintain weight, graham crackers and ginger snaps were big.  Was not super naseous, but more just did not feel like eating.  Cold sensitivity was issue for about 6 treatments, so gloves to pick cold things up and drinking things room temperture or higher.  Also developed real small sips of cold drinks as I went on which I could swing.  The second week, more so the day or so before next session, would have ices just because.

For neouropathy I have insoles for the sneakers and tried to walk.  Helped to some degree, though neuropathy has been building up since Ox was knocked out and after last session disconnect of about 3 weeks ago.  Also slept with gloves, which often helped.  Be careful and try to stay warm, there were times when I had the cold sensitivity where it was real painful, even if stepping outside in 50-60 degree weather and thinking I would be fine.

Get the numbing cream for the port.  Anti nausea pills, and use them before things build up there (I never vomited and most had mild quesy feeling.)

For hook ups and disconnects if you get the taste thing happening (mine took about 6 treatments), gum and mints popped beforehand really helped.

The tried is tough and the biggest thing is inertia.  It becomes real easy just to want to lie on the couch and watch TV or sleep.  There are a couple of bad days where I slept for 36-40 hours out of 48 (sometimes full 48),  and that is more than just inertia, talking more second week and even when on the pump (the steroids helped when hooked up.)  Walk, get a cup of coffee at a diner, walk to the end of the block.  Anything to move really helps physically and mentally for me.  I went to minor league baseball games almost all summer long.  Some days were tough in being inclined to sleep, but getting to the stadium and walking around it (good exercise) was something that was big getting me through this.  

(Some of these tips were also mentioned to me by others beforehand, so passing them on)

Overall I cannot complain too much about how chemo went for me.  And I say, my wish is that no one who goes through has it as "bad" as I did, if not better.  You will be suprised how quick 6 months goes in some respects.  Keep on posting here and hanging out.  It helped me a ton.

JanJan63

What kind of chemo? I found

What kind of chemo? I found that when I was on chemo and radiation over a year ago along with radiation I was extremely fatiqued. I'd lie in my bed and just stare out of the window. I'm normally kind of an ADD person who can't sit still so it was very weird. But, was it the radiation or the chemo or both? I had no other issues and a few weeks after it was over I felt normal again.

That being said, when I had the chemo with the oxyplatin I had neuropathy with cold sensitivity in my feet, hands, throat and even my face because it was winter. That was miserable. I read somewhere that if you drink something cold while you're getting the chemo it reduces it. I tried it but it didn't work for me. The worst part was probably the throat and not being able to drink anything cool let alone cold. The neuropathy would go away just before I had to have the next round. I was supposed to have 12 rounds but was going to tell my onc that I wasn't going to complete it after the 8th (I think it was) but then ended up in the hospital with a blood clot in my lung so that was the end of it.

I had the Emla cream for the port so that it wouldn't hurt so much but I found it did nothing. I was never nauseous, I didn't lose my hair, and other than the neuropathy was doing okay. I hope you'll be lucky and not have too many issues.

 

Jan

NEDbound

my chemo

I will be doing Folfox 12 rounds 2 weeks on 2 weeks off.  Pretty standard.  My onc is suggesting adding Avastin even though I am not stage IV.  There are some oncology centers that use Avastin adjuvant without evidence of mets.  I am probably going to do it.  I wouldn't be to handle it if I didn't take the Avastin and ended up with mets (I have twin 3 yo girls).  So I think I'll risk the cardiac and GI bleed complications.

vtspa6

NEDbound said:

my chemo

I will be doing Folfox 12 rounds 2 weeks on 2 weeks off.  Pretty standard.  My onc is suggesting adding Avastin even though I am not stage IV.  There are some oncology centers that use Avastin adjuvant without evidence of mets.  I am probably going to do it.  I wouldn't be to handle it if I didn't take the Avastin and ended up with mets (I have twin 3 yo girls).  So I think I'll risk the cardiac and GI bleed complications.

Looks like you will be

Looks like you will be starting the same treatment that my husband just started.  He had his first treatment this past Wed.  He went home with a pump to keep the chemo going for a few more days.  He just got the pump disconnected today.  Yesterday and today were awful for him.  Very tired and just felt yucky.  He had to force himself to do simple tasks.  Am hoping tomorrow goes better.  I feel for you with 3 yr old twins!  Have family and friends around, you might just need them.  On the other hand, the children might keep your mind off of this cancer.  When you find time, please keep us updated.

NewHere

NEDbound said:

my chemo

I will be doing Folfox 12 rounds 2 weeks on 2 weeks off.  Pretty standard.  My onc is suggesting adding Avastin even though I am not stage IV.  There are some oncology centers that use Avastin adjuvant without evidence of mets.  I am probably going to do it.  I wouldn't be to handle it if I didn't take the Avastin and ended up with mets (I have twin 3 yo girls).  So I think I'll risk the cardiac and GI bleed complications.

One Other Bit

Some places use the battery pumps, I am MSK and they are using the pumps that run off body heat, so not noisy (people who have had the batery pump have mentioned the noise and also carrying batteries).  Not sure if you can request the non-battery one or the facility where you are uses them.  

lizard44

Just finished

the seventh round of neoadjuvant chemo for stage IV rectal cancer with  mets to the liver: Oxaliplatin, Fusilev, Avasin, 5-FU.  I've been fortunate in that  I haven't suffered any of the more severe side-effects of chemo, and most of the effects have been more annoyances than  anything else. The fatigue has tbeen the most noticeable, occasional  fleeting feelings of nausea, dizziness, facial flushing and  heat while on the 5-FU pump, alternate bouts of constipation and diarrhea, and I  need  to wear reading glasses now although I've always been nearsighted. Until this last treatment I didn't have a problem with neuropathy or cold sensitivity.  This time,  I definitely felt discomfort in my hands when I picked up some frozen food without gloves on. I've  tried to folllow the directions the nurses gave me when I started and have avoided eating fried, spicy or ice cold food or drinking anything other than hot or room temperature drinks;  have stayed out of the sun unless wearing  good sun protection,  wear gloves (most of the time) when reaching into the fridge or freezer.  I  take frequent naps when the fatigue hits but try to stay active otherwise and  have been going to yoga classes regularly. I've tried to avoid being exposed to people who might have colds or appear to be sick, so have been avoiding indoor crowds for the most part, but have been to outdoor events like  farmers markets, ball games, etc.  where I don't have to  get too close to other people.  After the third chemo treatment my white bood cell count dropped and we had to delay treatment for a week.  Since then I've been getting Neupogen shots between treatments to keep the levels up since the count has been dropping pretty rapidly in a week's time. The oncologist has me scheduled for  one more chemo treatment before we do a scan to see how effective the chemo has been.  I can definitely tell there's a difference in the rectal tumor and feel it has shrunk a great deal.  We're keeping our fingers crossed on the liver mets at this point.

As others have mentioned, everyone seems to react differently.  I hope you are one of those who  gets minimal side effects, but if you do get  more severe ones, don't push yourself beyond  safe imits and be sure to let your doctor know  what effects the chemo is having.  Good luck.

Grace

annalexandria

Awesome news!

Congratulations!  I hope the chemo isn't too arduous and you can wrap this stage of life up asap.  It's nice to see some light at the end of the tunnel.

ETA keep an eye on the neuropathy.  The oxi will almost certainly cause it, and if you get to the point that it doesn't get better in between infusions then you should discuss lowering the dose (or cutting it out all together) with your doc.  You risk having the damage be permanent otherwise, which is what happened to me.  Not the end of the world, but not pleasant either.