Stage 4 adenocarcinoma, dx at age 35

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Stage 4 adenocarcinoma, dx at age 35

by hopefulheather on Sun Nov 16, 2014 03:11 AM

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I am new here and was wondering what experiences anyone has had with Tarceva. My husband was diagnosed in July with stage 4 lung cancer. It is in both lungs, the pleura around both lungs the pericardium of the heart as well as the lymph nodes and some blood vessels in the chest. A thoracotomy was done but the dr said after he started the surgery he realized my husbands disease was far more advanced than anticipated thus inoperable. He started cisplatin and etoposide on his 36th birthday as well as radiation. He became too ill to finish the chemotherapy but did complet the radiation. The tumor the dr tested came back EGFR positive so they have put him on 150mg of tarceva. He has EVERY side effect listed. The dr is dropping his dose to 100mg. This has been very hard on him and our family (we have four kids ranging from 9yrs to 15yrs old). Has anyone had success with tarceva? do the side effects get any better??? Thanks again for any feedback.

RE: Stage 4 adenocarcinoma, dx at age 35

by PositiveNote on Thu Jan 22, 2015 12:26 AM

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Hi – I am sorry  to hear about your husband. I too have stage 4 Non Small Cell lung cancer subtype adenocarcinoma  diagnosed in April 2014.  I am 62 years of age and now 118 pounds.  Fortunately I am EGFR positive and started Traceva at 150 MG BUT that dose was too high for my body; FATIQUE, diarrhea (lost 8 pounds in 2 weeks), rashes head to toe, cracked  bleeding skin, dry eyes with stys, hair loss. My doctor reduced dose to 75 mg per day and I have taken 75mg for 7 months now.

It took about 3 months before the side effects became less intense.  I still experience dry skin and rashes which I manage with creams and lotions. My hair stopped falling out and is slowly growing back. The fatigue has reduced – I still need an hour nap in the afternoon. My dry eyes are managed using OcuSoft lid scrubs and Refresh eye drops and a gel at night. My appetite has returned -  small portions are best.

Diarrhea is a constant problem.  I take Imodium as directed on the package. My diet is very plain now; no spices, little dairy, no rich foods of any kind.

I understand Tarceva is currently the best drug to take for this cancer. I like the convenience of taking a pill – your quality of life is important when facing this disease.

The good news is I had a CT scan last week that indicated the cancer has not grown and the fluid in my pleura is almost gone.  

I have included a listing of tips for side effects that I hope you find useful. May God bless you both as you walk out this journey together. 

Skin Rash – Cortizone -10 plus has a moisturizing component in it, and a prescription of Clindamycin Phosphate 1% for the cracked areas.  You also need to apply a moisturizing lotion – ALL over your body – it will likely sting but you must.

Moisturizing your skin – for my face I use Lancôme SPF 30 face moisturizer – lotion, followed by the cream version – day and night. If my face gets tight during the day I apply more lotion. For the body I found OLAY QUENCH Ultra w Shea butter body lotion worked best.  I tried others but they fell short on keeping up with the drying effect of the drug.

Finger tips – you may notice small cuts- like a paper cut appearing on your fingertips.  This is dryness and is hard to avoid. I make use of the latex gloves when in the kitchen preparing dinners and clearing afterwards.  Use a good hand cream OFTEN and frequently apply ‘Moroccan Oil ‘ to the fingertips and around the nails – it is non greasy and will work into the skin.

EYES – to combat and sooth the dryness ‘Refresh Plus’ lubricant eye drops and a gel at night, Ocusoft lids scrubs. Apply a warm wet compress  or  ‘Bruder’s microwave activated eye hydrating compress’ for 3-5 minutes – this eye hydrating mask really works. It can travel easily with you too.

Eye STYS – these are small white sore spots that develop at the base of the eye lashes. It is the result of blocked  eye glands. Warm compresses a few times/day over 6 – 10 days should clear them up. They can be bothersome – so keep up the compresses. They are not usually an eye infection but if in doubt see your doctor.

EYE Lashes – I wear glasses so I use an eyelash curler everyday to ensure the growing lashes are trained to curl out and up – not in your eyes or on your glasses. You can also apply a clear gel like mascara to keep them in place – men too.  I also  had to trim the lashes.

HYDRTATION – Drink more water than you think you need, at least 8 to 10-  10oz glasses per day. I recommend filtered – the chlorine in drinking water will upset your stomach.  I moved to non-flavored electrolyte water – it is smoother  and apparently our body absorbs it easier.  Use a straw it helps your lips.

Diarrheas – use Imodium immediately after the first event – don’t  wait for another event – and drink lots of water.

Stomach upset – try ginger teas and chocolate covered ginger

LIPS – mine are so dry!  I use ‘Vichy intensive care for dry lips’. I drink all liquids using a straw.

Feet – Sally Hansen’s Cracked Heel Repair Crème’ all over my feet after a shower and before sleep.  If you can put cotton socks on your feet at night it helps to intensify the treatment.

Nails – mine are drying and brittle. I use Sally Hansen Complete Care treatment. It is clear so men can use it too. Ladies – you can use it as a base coat and apply color as usual.

Hair – before too long my hair became dry and the scalp was flaking. My hair is thinning too. I switched to a natural shampoo and conditioner – Original Sprout for babies and up.  Daily, I work Moroccan oil onto my scalp and through my hair. It is non-greasy and helps my hair to look natural.  

RE: Stage 4 adenocarcinoma, dx at age 35

by neenjeanne on Thu Jan 22, 2015 12:38 AM

Quote | Reply

On Jan 22, 2015 12:26 AM PositiveNote wrote:

Hi – I am sorry  to hear about your husband. I too have stage 4 Non Small Cell lung cancer subtype adenocarcinoma  diagnosed in April 2014.  I am 62 years of age and now 118 pounds.  Fortunately I am EGFR positive and started Traceva at 150 MG BUT that dose was too high for my body; FATIQUE, diarrhea (lost 8 pounds in 2 weeks), rashes head to toe, cracked  bleeding skin, dry eyes with stys, hair loss. My doctor reduced dose to 75 mg per day and I have taken 75mg for 7 months now.

It took about 3 months before the side effects became less intense.  I still experience dry skin and rashes which I manage with creams and lotions. My hair stopped falling out and is slowly growing back. The fatigue has reduced – I still need an hour nap in the afternoon. My dry eyes are managed using OcuSoft lid scrubs and Refresh eye drops and a gel at night. My appetite has returned -  small portions are best.

Diarrhea is a constant problem.  I take Imodium as directed on the package. My diet is very plain now; no spices, little dairy, no rich foods of any kind.

I understand Tarceva is currently the best drug to take for this cancer. I like the convenience of taking a pill – your quality of life is important when facing this disease.

The good news is I had a CT scan last week that indicated the cancer has not grown and the fluid in my pleura is almost gone.  

I have included a listing of tips for side effects that I hope you find useful. May God bless you both as you walk out this journey together. 

Skin Rash – Cortizone -10 plus has a moisturizing component in it, and a prescription of Clindamycin Phosphate 1% for the cracked areas.  You also need to apply a moisturizing lotion – ALL over your body – it will likely sting but you must.

Moisturizing your skin – for my face I use Lancôme SPF 30 face moisturizer – lotion, followed by the cream version – day and night. If my face gets tight during the day I apply more lotion. For the body I found OLAY QUENCH Ultra w Shea butter body lotion worked best.  I tried others but they fell short on keeping up with the drying effect of the drug.

Finger tips – you may notice small cuts- like a paper cut appearing on your fingertips.  This is dryness and is hard to avoid. I make use of the latex gloves when in the kitchen preparing dinners and clearing afterwards.  Use a good hand cream OFTEN and frequently apply ‘Moroccan Oil ‘ to the fingertips and around the nails – it is non greasy and will work into the skin.

EYES – to combat and sooth the dryness ‘Refresh Plus’ lubricant eye drops and a gel at night, Ocusoft lids scrubs. Apply a warm wet compress  or  ‘Bruder’s microwave activated eye hydrating compress’ for 3-5 minutes – this eye hydrating mask really works. It can travel easily with you too.

Eye STYS – these are small white sore spots that develop at the base of the eye lashes. It is the result of blocked  eye glands. Warm compresses a few times/day over 6 – 10 days should clear them up. They can be bothersome – so keep up the compresses. They are not usually an eye infection but if in doubt see your doctor.

EYE Lashes – I wear glasses so I use an eyelash curler everyday to ensure the growing lashes are trained to curl out and up – not in your eyes or on your glasses. You can also apply a clear gel like mascara to keep them in place – men too.  I also  had to trim the lashes.

HYDRTATION – Drink more water than you think you need, at least 8 to 10-  10oz glasses per day. I recommend filtered – the chlorine in drinking water will upset your stomach.  I moved to non-flavored electrolyte water – it is smoother  and apparently our body absorbs it easier.  Use a straw it helps your lips.

Diarrheas – use Imodium immediately after the first event – don’t  wait for another event – and drink lots of water.

Stomach upset – try ginger teas and chocolate covered ginger

LIPS – mine are so dry!  I use ‘Vichy intensive care for dry lips’. I drink all liquids using a straw.

Feet – Sally Hansen’s Cracked Heel Repair Crème’ all over my feet after a shower and before sleep.  If you can put cotton socks on your feet at night it helps to intensify the treatment.

Nails – mine are drying and brittle. I use Sally Hansen Complete Care treatment. It is clear so men can use it too. Ladies – you can use it as a base coat and apply color as usual.

Hair – before too long my hair became dry and the scalp was flaking. My hair is thinning too. I switched to a natural shampoo and conditioner – Original Sprout for babies and up.  Daily, I work Moroccan oil onto my scalp and through my hair. It is non-greasy and helps my hair to look natural.  

PositiveNote,

Thank you for your long list of products to help with side effects!  I use a couple of them already with success and I was happy to hear the others.  I greatly appreciate the care you took in sharing them.  Jeanne

RE: Stage 4 adenocarcinoma, dx at age 35

by Kelly1388 on Fri Jan 23, 2015 03:32 PM

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Hi Jeanne,

I am so sorry about your husband's diagnosis. I'm in a very similar situation as your husband.  I too was diagnosed with stage 4 adenocarcinoma of the lung with mets to the hip bone and some lymph nodes just two months ago. It was a week before my 40th birthday so I know how your husband must have felt. I too have children (12 and 15) and I know what you are going through. I am also inoperable and EGFR positive. I started Tarceva on December 24th. I'm on a clinical trial which studies the dosing schedule of tarceva. I take 900mg (6 pills of 150 each) two days a week in a row and a 50 mg pill the next 5 days. I started off with 1200 mg for my 1st and 2nd dose but 3 days after I took the first dose I developed a very severe skin rash. My doctor had already prescribed doxicyclin and a steroid cream but the rash on my face and scalp was awfully painful despite the prescriptions. My onc. took me off the tarceva for 12 days and I started back on a 900 mg dose.  It's been much much better ever since. I continue to take the doxicyclin and use the steroid cream but my onc also prescribs an antibiotic lotion. Using all the above has really gotten the rash under control. I also got a prescription steroid shampoo which is very effective. So it's now less than a month since I started treatment. My scalp cleared up after 2 weeks and my face is almost clear.

I never smoked and had no history of cancer in my family. A dull pain in my hip lead to this diagnosis. I had no other symptoms. I haven't had a CT yet to see if tarceva is working but the pain in my hip is now completely gone:) 

I feel we are one of the lucky ones that have this mutation and tarceva will work great for as long as it works. I go to memorial sloan kettering in NY and my oncologist believes that it's a great time to be very hopeful for treatments in lung cancer. They are comming up with new treatments every day and it's just a metter of time that they WILL find a cure. You and your husband are in my prayers. 

RE: Stage 4 adenocarcinoma, dx at age 35

by neenjeanne on Fri Jan 23, 2015 04:41 PM

Quote | Reply

On Jan 23, 2015 3:32 PM Kelly1388 wrote:

Hi Jeanne,

I am so sorry about your husband's diagnosis. I'm in a very similar situation as your husband.  I too was diagnosed with stage 4 adenocarcinoma of the lung with mets to the hip bone and some lymph nodes just two months ago. It was a week before my 40th birthday so I know how your husband must have felt. I too have children (12 and 15) and I know what you are going through. I am also inoperable and EGFR positive. I started Tarceva on December 24th. I'm on a clinical trial which studies the dosing schedule of tarceva. I take 900mg (6 pills of 150 each) two days a week in a row and a 50 mg pill the next 5 days. I started off with 1200 mg for my 1st and 2nd dose but 3 days after I took the first dose I developed a very severe skin rash. My doctor had already prescribed doxicyclin and a steroid cream but the rash on my face and scalp was awfully painful despite the prescriptions. My onc. took me off the tarceva for 12 days and I started back on a 900 mg dose.  It's been much much better ever since. I continue to take the doxicyclin and use the steroid cream but my onc also prescribs an antibiotic lotion. Using all the above has really gotten the rash under control. I also got a prescription steroid shampoo which is very effective. So it's now less than a month since I started treatment. My scalp cleared up after 2 weeks and my face is almost clear.

I never smoked and had no history of cancer in my family. A dull pain in my hip lead to this diagnosis. I had no other symptoms. I haven't had a CT yet to see if tarceva is working but the pain in my hip is now completely gone:) 

I feel we are one of the lucky ones that have this mutation and tarceva will work great for as long as it works. I go to memorial sloan kettering in NY and my oncologist believes that it's a great time to be very hopeful for treatments in lung cancer. They are comming up with new treatments every day and it's just a metter of time that they WILL find a cure. You and your husband are in my prayers. 

Kelly,

I am sorry to hear your situation --- I think you are trying to reach hopefulheather---- 

RE: Stage 4 adenocarcinoma, dx at age 35

by hopefulheather on Sun Jan 25, 2015 11:32 AM

Quote | Reply

Sorry I haven't updated in a while. My husband passed away in december. I'm not quite sure how the Dr's went from hopeful and keeping us on a positive track to he isn't going to make it a few days later. I will keep all of you in my prayers and hope you all have a better outcome than my husband did.

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