New member/intoduction

[sallys]

Hello to all!

I am 72 yrs. young and have nsclc (squamous). Have had lobectomy left lower lung, no lymph nodes involved and they said they got all the cancer. In Feb.2007 my cancer returned in both lungs, the mid upper and lower rt. lobe. Chemo was started Mar. 5 2007. 6 mo. and 18 treatments with carboplatin and taxol they discontinued it because of the bad side effects. They are really rough. It has left me with bad neuropathy of rt.and lt. leg and foot plus my digestive is messed up so bad. my stomach feels full all the time and I can only eat small amounts of food and not heavy food. Ice cream is great, cottage cheese and toast w/applesauce and pot pies. MY doc said not to eat the ice cream as cancer feeds on sugar. But it makes my tummy feel so much better.

After chemo stopped I was sicker than while on it. I was throwing up daily, very weak and so tired...I thought this may be withdrawal? Any comments here? Through all of this I continued my walking of 5 to 10 miles daily.

The chemo did get rid of the tumor in the right lung ?but the left lung (surgical lung)still has cancer but the density is less, no shrinkage however according to my last pet 4/23/07. I am scheduled for another pet scan Nov. If cancer has spread or grown any doc will talk more chemo and I am thinking of opting out of that option since the last chemo did such a number on me.

The surgery also developed post op thoracic pain. Constant pain (really bad) and the feeling of a tight band around my chest is constantly there. Doc (surgeon) warned me that I would have some bad pain for a long long time. He said you have a lot of nerve damage along with bone damage. I can hardly stand to take a bath and touch that side it is extremely sensitive from shoulder to waist. I am seeing a pain management doc and she has helped a lot at least the pain is down to where I could handle it until 3 days ago when muscle spasms started. Today they are really bad. The new nerve med I am on Lyrica causes muscles spasms when I already had problems with that because of 2 back surgeries. I have gone from 105 lbs. to 90 lbs. through all of this. My pain mgmt. doc is wanting to do cortisone injections into the ribs to help w/the nerve pain. Has anyone else had this problem and had this done.

I think walking is important and I still do some walking and am trying to get back to where I was. For those of you who have bone pain Noni Juice is great. You drink an ounce every hr. for 3 days and it starts to take hold and will relieve any bone pain, then you drop down to when you need it. My doctor said the cancer tumor causes the bone pain I am having. Has anyone else been told this?

Cancer is scary and a dreaded word. But I am trusting in our Lord for healing and guidance and lots of prayers from so many.

Would you have more chemo if the tumor is still there and growing? I had so much nausea and vomitting and side effects, the taxol and carboplatin as this did such a number on me.

I am so happy my son found this site and was up late last night reading the comments on lung cancer. You all sound so encouraging. My family has not accepted my cancer well and are so afraid of losing me. And how hav I accepted it all. The first time I was shocked and numb but felt it would be gone with the surgery and I would be healed. Yeh, SURPRISE, SURPRISE!!! The news of the recurrance and this time the nodule in the right lung too. I definitely am not a happy camper. Not many tears as more shock and numbness. Why??? did it come back so soon. My Papa's lung CA after surgery didn't come back for 6 yrs.

I am an active lady and this cancer has really taken over my life here and taken so much from me. The gentleman Ernie who has the boat and beat the cancer had a site that listed all he was doing to stay cancer free and all he did to get there, His inspirational scripture is great.

Also wanted to ask if any have heard of the Oblapion treatment...They put a probe into the tumor and it heats up on the end and burns up the tumor???

If you all have any suggestions for me will be happy to receive them. I lost my Mom, Dad and brother to cancer and now it has come my way.

I putting my faith and trust in the Lord for His healing be it His will and the many many prayers lifting me up to Him.

My love and prayers for all of you, God loves us each one and He is always at our side....Sally

[Ry]

Welcome Sally, I am so glad you found our board. To answer one of your questions, I believe you mean radio-frequency ablation or RFA. There is also another procedure others have had called cyber knife. You could ask your doctor about those options. It is always a good idea to get a second opinion and you should do so if you haven't already.

You need to put weight on so don't worry about how much ice cream you are eating.

There are many treatment options open to you that have mild side effects. Avastin is an easy chemo and a quick infusion and Tarceva is another option ( a daily pill).

Again, welcome to our board.

Rochelle

[RandyW]

Water is also key as Dehydration is an enemy here DRINK WATER!!!

Here is a Link that may help some with RFA radio freqeuncy ablation of which you were asking about;

http://www.mayoclinic.org/radiofrequency-ablation/

It is good to be active but get your rest too. You sound liek you are doing great right now and have everything either monitored or being treated. Chemo is a good idea after surgery to MAKE SURE they got it all gone!!

[recce101]

Hi, Sally, welcome!

I had the same digestive system and neuropathy side effects from the taxol as you, but not as severe. Though I finished the taxol/carbo part of my treatment in late January, my GI tract is still not back to normal, probably because the avastin which I was still on through September significantly delays healing. My sense of taste has returned for the most part, but like you, my stomach won't handle nearly the quantity it used to. I still get some reflux, usually with acid, if I eat the wrong thing (whatever that is on a particular day) or eat too much of anything. But it's slowly improving and not nearly as bothersome as it was some months ago.

The neuropathy didn't start until my 6th (last) taxol cycle, and I'd been watching for it because of what I'd read and because my oncologist had been asking me about numbness and tingling at every previous checkup. It came on very fast and within 2 or 3 days I needed a walker to get around, but I tracked my onc down at his other clinic and he called in a prescription for neurontin which helped immensely within a couple of days. Since then there's been very slow but constant improvement, and I still have some residual numbness but no tingling. So I was lucky on that one, which can be very debilitating as you well know.

Now, about sugar feeding the cancer. I'd heard this story too, so on one of my first meetings with my oncologist I asked about it. He said that story continues to go around, maybe strengthened in some people's minds by what they know of PET scan basics, but there is no good evidence that the amount of sugar in one's diet has any bearing on cancer progression. As a devoted ice cream lover I happily latched onto that explanation and have never looked back!

Aloha,

Ned

[beatlemike]

Hi Sally and welcome. I hope you find much support and information here. You didnt mention when your first surgery was and how long before it came back. My prayers and thoughts are with you. Mike

[Donna G]

Welcome.

The chest pain from the incision is common. We women frequently discuss how the appliance (bra) agrevates it more. This is when I am grateful that a nice tee shirt on most days is sufficient for me.

When you had chemo, did the doctor give you meds for nausea? Mine gave me about 4 different kinds.

I had lost quite a lot of weight before I was diagnosed so they encouraged me to drink something like Boost or Ensure between meals.

The great thing that you did was keep walking! Wow. I was so wiped out and tired the thought never occured to me. I would not have walked at all if I had not had Mitch , a collie dog, at the time.

I also got Neuropathy that still affects my feet. My feet want shoes on all the time and the same style! No changes! I where SAS , they come in different colors and are so comfortable. Never ever get a piece of sand in your shoe! Boy it feels like a piece of glass!

Well with all those complaints, I am so happy. I soon will be a 10 year survivor and got to celebrate my 60th Birthday, I never though years ago I would make my 51st!

Keep us posted.

DonnaG

[ernrol]

Sally,

Welcome to the site. You may want to ask about Avastin and Tarceva if you need more chemo. They have been used together and by them selves. I am now having Carboplatin, Taxol and Avastin to try to get rid of a couple sots.

Stay positive,

Ernie

[dadstimeon]

Welcome Sally,

Glad yo found us. Stay with us great place for sharing, caring and support. Prayers for the best.

Rich

[fillise]

Sally,,

Welcome to our little corner of the internet. I'm sorry your disease came back so quickly, but there are still many treatments. If your doctor suggests a further course of chemo be sure to talk about what drugs he will want to use. Some have more side effects than others. He probably won't use the same one as he did before so you may find that you tolerate a new combo much better. If you start and fin that you can't handle it you can always stop.

BUT any decision is yours and I suspect you know yourself well enough to know what you want--so let us know how we can help whatever you decide.

Susan

[Dollfinn]

Earnie~ Again, I'm so unsure, my onc. does not put his pt.s on any meds after chemo. He's been right on the money so far. I hate to bail now, but I dont get it. I'll post for Dr. West. Mary

[Don M]

Welcome Sally

Don M

[trish2418]

Welcome, Sally.

Trish

[barbara5452]

Welcome Sally, eat your ice cream, and keep your attitude where it is and the pain will soon pass. So many nerves affected when we have lung surgery and rib bones moved and parted. Give it time, and have a bowl of ice cream for me (I'm diabetic and miss it so much) chocolate with hershey's syrup.

[sallys]

One day I will get this right. I just posted to you and then minimized this page and came back to it and it was sent.....the previous was from Sallys if you did get it.

"beatlemike"]Hi Sally and welcome. I hope you find much support and information here. You didnt mention when your first surgery was and how long before it came back. My prayers and thoughts are with you. Mike

[wendyr]

Hi Sally and welcome. My hubby has been on Tarceva and Avastin since the beginning of the year. The side effects initially were fatigue and joint pain but now he tolerates the side effects much better and the best news is that he has been stable for 10 months. There are many treatment options for you to explore and I'm sure you'll find one that you can tolerate while still keeping the cancer at bay. Good Luck and God Bless

wendyr

[Judy-OK]

Welcome Sally this board is full of fabulous, friendly, informative, helpful folks. I am a fellow Okie and from the looks of it only about 40 miles or so between us. I had neurontin and am currently on lyrica .... had an appointment with my Onc yesdterday and she increased the milligrams I take to see if it would help with the pain. I did not have surgery but have some residual radiation damage that we are trying to control. When receiving chemo and radiation at the same time I literally lived off of shakes with ice cream and Ensure and malt powder and chocolate syrup. I managed to put on about 20 pounds so I say eat whatever tastes good to you. Let us know how things are going.

[sallys]

My chemo was discontinued Aug. 1, 2007 (6 mo. carboplatin/taxol and 18 treatments). I am still having some bad nauea, still some vomitting. It feels so like morning sickness. Every morn I wake up to this. Doc has me on nexium for this plus the Kofran for nausea to take prn. How long does this nausea last? They seem to think I shouldn't still be bothered with it. This makes it very hard eating before afternoon, then only small amounts because of the full feeling and still the pain despite the pain meds. All this really wears one out. Still am so weak and tired and my hospital stay with the muscle spasms so bad in the chest hasn't helped any. And then this morning is going to be one of the days I throw up. My appetite leaves a lot to be desired. Any suggestions here? Is this still within the norm range for side effects of chemo? I am back to getting some short walks in. Thanks to all and God blessl....Sally or as Ned says Aloha! That is so neat.

[connier]

Hi Sally and welcome.

My husband had the squamous cell also. He was very limited to foods that agreed with him and tasted good. We were never told anything about avoiding sugar. But if it tastes good and you are tolerating it then enjoy.

You are lucky to have your family. Don't be afraid to let them help you.