Stage IV Mastasized to Lungs-Newly Diaganosed

spudcat

derMaus said:

CyberKnife is stereotactic

CyberKnife is stereotactic radiation. It's high dose - much higher than external beam - directed at a very small target area. It's used w/brain tumors, prostate cancer, lung cancer, etc., to treat tumors that are in otherwise inoperable locations. Definitely ask about it. While there are a few people on this board who've done 'holistic' treatment instead of chemo/radiation, you'll find many more who've combined the two using supplements and other approaches to support their body before, during and after traditional treatment. I'm sure you'll hear from many members on this topic. What chemo combination did you have previously? 

Thank you so much for the

Thank you so much for the information. I'm not sure if they call what I'm getting CyberKnife or not but I'm getting five intense radiation treatments externally to my chest. I have not had chemotherapy before this will be my first time. I see the chemo doctor tomorrow to discuss the plan. I'm also going to ask them about immunotherapy. 

derMaus

spudcat said:

Thank you so much for the

Thank you so much for the information. I'm not sure if they call what I'm getting CyberKnife or not but I'm getting five intense radiation treatments externally to my chest. I have not had chemotherapy before this will be my first time. I see the chemo doctor tomorrow to discuss the plan. I'm also going to ask them about immunotherapy. 

If you're having 5 intense

If you're having 5 intense treatments then you're probably having CyberKnife or a version thereof. That's very good news ! I had almost no side effects from mine, other than tiredness. Chemo + radiation is good - if your body can handle it - because it ramps up the kill factor on cancer cells. Let us know what they say about immunotherapy, and good luck!

spudcat

Thanks ladies much

Thanks ladies much appreciated.  I begin my chemo May 17.  6 rounds with 6 hour infusions each time carbo/taxol.  Seems my radiation onc didn't tell me everything!!  I have mets in both lungs, small tumors but in both lungs and only 1 larger wrapped around my main airway on the right lung. 

I finished radiation on Tuesday May 8 and saw my original surgeon/chemo dr after that. 

Thank god for my surgeon/chemo Dr. she laid it all out on the line. 

I am scared of course and of the steroids and those side effects, mostly the agression and insomnia .  Any sugguestions or stories you'd like to share, I'd love to hear them.

I had to book off work, excuse, I was forced to leave work due to this disease!!  Holy jumping that bugs my butt!! I am a temp so no benefits and no job to go back to my contract was finishing at the end of July..  Oh well, it is what it is.  I am staying positive and feel good going into chemo (strong just scared to tears) I hope this works and I can go back to work once all this is over.  I figure at least 1.5 to 2 years for recovery, but we will see how I am feeling at that time. I might need to take an early retirement!!

Thanks for reading ladies, stay strong and fight like a girl!!

 

Tamlen

spudcat said:

Thanks ladies much

Thanks ladies much appreciated.  I begin my chemo May 17.  6 rounds with 6 hour infusions each time carbo/taxol.  Seems my radiation onc didn't tell me everything!!  I have mets in both lungs, small tumors but in both lungs and only 1 larger wrapped around my main airway on the right lung. 

I finished radiation on Tuesday May 8 and saw my original surgeon/chemo dr after that. 

Thank god for my surgeon/chemo Dr. she laid it all out on the line. 

I am scared of course and of the steroids and those side effects, mostly the agression and insomnia .  Any sugguestions or stories you'd like to share, I'd love to hear them.

I had to book off work, excuse, I was forced to leave work due to this disease!!  Holy jumping that bugs my butt!! I am a temp so no benefits and no job to go back to my contract was finishing at the end of July..  Oh well, it is what it is.  I am staying positive and feel good going into chemo (strong just scared to tears) I hope this works and I can go back to work once all this is over.  I figure at least 1.5 to 2 years for recovery, but we will see how I am feeling at that time. I might need to take an early retirement!!

Thanks for reading ladies, stay strong and fight like a girl!!

 

Fight like a girl!

spudcat, I'm just slightly ahead of you on this journey. My first round of chemo was May 2. Like you, I have mets in the lungs and am scheduled for 6 rounds of carbo/taxol. I've also had my tumor sent out for molecular analysis, in case there are mutations it shares with different cancers, making immunotherapy an option.

As the ladies here often say, "rough but doable." I don't know what regimen your onc will put you on, but mine had me take a fair amount of dexamethasone the night before and the morning of chemo, then I was given more via my port, along with other things like benadryl.

I had no aggression but I did have diarrhea of the mouth My husband wouldn't let me drive to chemo because he thought I might go 100 mph.

Day 1 (chemo day) was fine. I had a mild reaction to the Taxol -- a weird forboding feeling in my chest -- and they stopped the infusion for 30 minutes, then restarted it at a slower pace. The rest of the day was uneventful, thank goodness.

Day 2 was a normal day except for the revved feeling dex gave me. My poor husband, who took medical leave to be with me. I think I never stopped talking.

Day 3 was very bad for me. The dex washed out of my system ("the steroid cliff") and everything hit at once -- the room began to spin, I heard hissing in my ears, I got an instant migraine, a wave of nausea hit me, I started to shake all over, my hips and thigh bones started to ache, and I had trouble moving. I was getting dressed after my shower and I called out to my husband. He got to me just as I passed out and saved me from hitting my head on the tile bathroom floor. He said I was out for 10-15 seconds. Thank goodness I wasn't on the stairs.

The nausea never got very bad, thanks to the advice from this forum: Stay ahead of it. I started the anti-nausea meds immediately and set an alarm to take the next round, even if it was in the middle of the night. I never got sick. The bone pain, however was pretty bad, I won't lie to you. After watching me whimpering for 12 hours on Day 3, my husband called the gyn onc on call and they put me back on a tiny bit of dex, just a day's worth. That made a huge difference. I'm allergic to most opioids and opiates, so I couldn't take anything else. Tylenol certainly didn't cut it.

Days 4-5 were not great but not horrible. I was mostly just fatigued and uncomfortable from a bit of bone pain (despite the claritin I was taking, thanks to the forum). I found it was better when I moved around.

Day 6 and on has been fine. A little tired, nothing awful, I'm back to hiking 3 miles a day to stay active. They say that physical activity actually helps you feel less fatigued and so my husband rousted my a** from the chair each day -- and I found that to be very true.

The insomnia was pretty bad -- I didn't sleep for 40+ hours after the first infusion, though I desperately wanted to. Even now, I'm still not having the best rest. I started taking melatonin (10mg, prescribed by my naturopathic onc and approved by my gyn onc) and that has helped quite a bit.

Good luck to you and keep us posted!

derMaus

My first day experience was

My first day experience was pretty much like Tamlen's: I had a slight initial reaction, they backed it off and pushed in slower, no further effects. They started me with the standard steroid dose of 20 (cc? mg?). I always take sleeping meds so was only a little restless that night, not horrible, except for an itchy face (I'm that way with some narcotics, too). Next day I had lots of energy from the residual steroids, which tapered off over the next couple of days. Fortunately, I never had the crash that some do, and didn't get sick for about 4-5 days. When I did get sick it was just like a mild case of the flu, not dramatic, but I stayed in bed for two days - not an issue I was on long term medical leave. Please remember that you have some control over your infusion, even if you're not informed of that. I pushed them to keep reducing the steriod dose until at the end I was only getting 10 units. If you're too 'speedy' after your first dose, you can push for a reduction on the second one. I didn't really have bad nausea until right before the 4th round, which makes sense as the effects are cumulative. I had intermittent diarrhea and killer farts, but that's normal. While I didn't have any bone pain, I had wierd random shooting pains throughout my body that lasted about 5-10 seconds (also typical). I didn't find out about probiotics until part-way through, and wish I'd started massive doses earlier. Also glutamine can help with neuropathy. I won't lie, it's super scary the first time but after that it's very predictable and becomes routine. You'll do great with all the good advice to be had on this forum!

LisaPizza

derMaus said:

My first day experience was

My first day experience was pretty much like Tamlen's: I had a slight initial reaction, they backed it off and pushed in slower, no further effects. They started me with the standard steroid dose of 20 (cc? mg?). I always take sleeping meds so was only a little restless that night, not horrible, except for an itchy face (I'm that way with some narcotics, too). Next day I had lots of energy from the residual steroids, which tapered off over the next couple of days. Fortunately, I never had the crash that some do, and didn't get sick for about 4-5 days. When I did get sick it was just like a mild case of the flu, not dramatic, but I stayed in bed for two days - not an issue I was on long term medical leave. Please remember that you have some control over your infusion, even if you're not informed of that. I pushed them to keep reducing the steriod dose until at the end I was only getting 10 units. If you're too 'speedy' after your first dose, you can push for a reduction on the second one. I didn't really have bad nausea until right before the 4th round, which makes sense as the effects are cumulative. I had intermittent diarrhea and killer farts, but that's normal. While I didn't have any bone pain, I had wierd random shooting pains throughout my body that lasted about 5-10 seconds (also typical). I didn't find out about probiotics until part-way through, and wish I'd started massive doses earlier. Also glutamine can help with neuropathy. I won't lie, it's super scary the first time but after that it's very predictable and becomes routine. You'll do great with all the good advice to be had on this forum!

"I had wierd random shooting

"I had wierd random shooting pains throughout my body that lasted about 5-10 seconds" ... I had exactly this (except they were a little more throbbing than stabbing) and felt like such a weirdo. Glad to know it wasn't just me (not that I'd wish pain on anyone!). I felt like a pinball machine. What random spot was gonna hurt next?

CheeseQueen57

Muffins
I put my excessesive steroid energy in to baking different kinds of muffins for the infusion staff. It endeared me to them and I baked some exceptional muffins.

LisaPizza

Man, I never had that steroid

Man, I never had that steroid energy.

cmb

No problems with infusions - later side effects

I didn't have any infusion-related reactions from either of the two chemo "phases" I underwent as part of my frontline chemo treatment. (These two phases with different drugs were planned from the beginning and not a result of any problems with the first phase drugs).

Side effects from Phase 1 (Paclitaxel/Carboplatin) were leg pain for three days each cycle, hair loss, nausea, diarrhea and fatigue. But I was able to work part-time as a management consultant during this period.

Side effects from Phase 2 (Ifosfamide/Mensa/ Doxorubicin) were more severe. Nausea, diarrhea and fatigue were all far worse, especially the week after the hospital stay when I needed additional fluids and antiemetics. I did little consulting work during these cycles.

I was not particularly affected by the steroids. I was given a prescription for Ativan (lorazepam) and told to take it for the first couple of nights after the infusions. I did and I slept fine. Like LisaPizza, I (sadly) did not have any extra steroids energy.

And like Tamlen, I did take the anti-nausea drugs on a regular schedule to control the nausea, which helped, but didn't take the queasy feeling away entirely.