PositiveNote

When Tarceva stopped working for you – what, if any, other treatment are you taking? 

I have Stage 4 NSCL cancer and have been on tarcvea for 7 months. Today I discovered the Tarceva is no longer as effective and the pleural fluid is beginning to build up again. Oncology has suggested trying Afatinib to see if it might keep the cancer in check. 

Has anyone used Afatinib?

I’m wondering what to do next.

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.  

Hi Kelly,

I have not heard of this ‘pulsed Tarceva ‘ treatment – have you checked out the Tarceva web site?  They have a support contact feature that may help address your treatment options.

Has your Oncologist used this treatment with other Tarceva patients?

 I to have stage 4 NSCLC  and at 124 pounds the recommended daily dose of 150 mg was too strong for my body. The rash – head to toes, FATIQUE,  dry cracking skin, eye stys and diarrhea did me in after 3 weeks. My hair thinned out too.  I took a 4 week rest to reset my body – it is a slow growing cancer so I was OK without treatments.  I restarted Tarceva at 75 mg per day and after 6 months I can report that the cancer’s side effects of fluid around my lung is almost gone and I can breathe normally.  I still have diarrhea every 6 days or so but the other side effects are much diminished. Dry skin  and rash is a constant battle. Diet has become very plain; no spices, or rich foods and daily at a minimum.  A rest every day is needed – if I fail to do so I am exhausted but can’t sleep.

 I pray that you get the best medical attention and correct dosage to help you though this life challenge.

 May God bless you and your family.

Praise God!

Yes, keep your focus on Jesus and His promises. He is with us each and every day holding our hands as we walk this challenging journey. Only He can fill your days with peace and joy.

The Lord's prayer is a powerful prayer - you can not loose. If He grants a mircle you are healed here on earth, if a mircle is not His will for you, you will be with Him in Heaven

Hi, I am sorry  to hear about your lung cancer. I understand your shock at the diagnosis. I too had hip pain and a nagging cough. My doctor thought the hip pain was due to mild arthritis and the cough was allergies – that was in Feb 2014. In April 2014 my  breathing was so labored and I had chest pain that sent me to emergency.  An x-ray revealed fluid in the pleura around  my entire right lung. Over 1500 ml was drained but that was only half of the fluid.  Tests on the fluid and a PET scan confirmed the diagnosis of Stage 4 Non-small cell lung cancer.  What a shock !  I am a 62 year old female,  a non-smoker and to the best of my knowledge, have not been exposed to any toxic chemicals.  I have the EGFR [epithelium growth factor rate]  mutation that supports taking a targeted drug ‘ Tarceva’ daily.   I have been on 75mg of Tarceva [150mg was too strong for me]  for 6 months now and I can report that I am feeling very good – almost as good as I did a year ago. There is much information on the internet about this type of cancer and various treatments.  I also joined a cancer support group for the first 4 months that really helped me understand cancer and helped me adjust my life to my new normal; living with cancer.  

I pray that you receive all the medical help and advice you will need to regain your quality of life.

I have been on 75mg Tarceva for 5 months now;  the first  month at 150mg for 3 weeks BUT the side effects – diarrhea and rash in scalp, face, in nose and eyes did me in. I stopped for 5 weeks to rest my body. In July 2014 I started again at 75mg dose; cut the 150 pill in half. The rash and diarrhea returned but less intense. 

I manage these side effects by staying  away from dairy, reducing caffeine intake to almost nothing, no spicy foods – a very plain diet is best. I go to my  comfort foods until my stomach and the diarrhea settles down. I experience diarrhea every 5- 9 days. Imodium helps – I take as directed on the package. So far my weight is stable; it fluctuates up and down by 3-5 pounds.

 I drink LOTS of filtered water daily and apply body lotion everywhere daily. I drink liquids with a straw to reduce dry lips. This really helps.

I apply Moroccan oil to my scalp (I lost 40% of my hair 40% over 3  months). My hair stopped falling out 4 weeks ago – it is dry and grows slowly. The oil helps it look natural.

For my dry eyes the doctor advised Refresh PM – a gel for night time along with OcuSoft Plus – a eyelid scrub that you leave on overnight. This treatment along with day time Refresh drops helps control the dryness and for the first time in 6 months I am sty free. 

I hope this helps.

May God bless you both throughout this journey.

On Sep 09, 2014 2:12 PM DJWINZ wrote:

Also known as erlotinib... A pill form of chemo.... I'm asking my doc about it since the Gemzar I am on is doing absolutely nothing to decrease my ca19-9 levels..... Please let me know! Thanks, Donna

Hi Donna

Tarceva is not considered chemotherapy; it is a ‘targeted’ drug that works best if you have the right genetic markers. Many people I have communicated with have very minor side effects with Tarceva, others – like myself, have experienced stronger more intense side effects. It will be different for everyone. Tarceva is a daily dose that you take at home which is so convenient and if you are fortunate – with very little or minor side effects it will target the cancer. I hope you have the right genetic markers.

I’ve been on Tarceva since May 2014. In April 2014 I was diagnosed with Stage 4 non-small cell lung cancer; a tumor in my right lung, fluid in the pleural membrane around my right lung and small tumors in my lymph nodes.

For me, after tests indicated I had the right markers I started treatment with a 150 mg daily dose but about 10 days in I was overwhelmed with FATIQUE, a nasty rash on my face, in my nose/ears and scalp and all over my upper body. It was sore, itchy and cracking open. Eye stys lined my upper and lower eyelids and these were painful. I was having diarrhea every other day and soon became dehydrated. I took a rest for 20 days and resumed Traceva at 75 mg. This dose works best for me. I still experience the rash, eye stys and dry skin but not as severe as the first attempt. My hair has thinned considerably and is very dry. The diarrhea comes and goes. Tarceva has reduced the fluid around my lung so I am breathing much better and I can sleep lying down. Today I will have been on the 75mg dose for 12 weeks and the rash and eye stys are diminishing. My thinning hair is not falling out as much and my quality of life has pretty much returned to normal- about 85% if what it used to be. 

I pray that whatever treatment you end up taking works well for you and that you regain your quality of life and health.

Hi – I’m wondering if anyone taking Tarceva has lost their hair?

 I have been told it is a remote chance with hair loss listed as a ‘not common’ side effect.  I’ve been on Tarceva now for 8 weeks and my hair is thinning very quickly. I’m experiencing a tender scalp and at times I can feel the hair falling out.

I’m now looking for a good source of head coverings.

In April 2014 I was diagnosed with Stage 4 NSCLC. It had metastasized to my lump nodes and pleural membranes around my lungs; I was functioning with only 1 and a quarter lung capacity. The only symptom I had was a persistent cough for about 3 months, then things changed quickly, I had trouble breathing and could hardly talk. I am 61 years of age, a nonsmoker, fair sensitive skinned and 124 pounds. A targeted drug was my best option and Tarceva at 150 mg was prescribed. On day 8 through to day 21 the side effects started to present and escalated; a nasty sore rash all over my head, neck, back and chest - even in my ears and nose, diarrhea, my eyes were burning red, weeping, sore and sensitive to light, FATIQUED, sensitive mouth, hair started to thin out, skin peeled from head to toes. After a 20 day rest, I restarted Tarceva at 75 mg. As of this writing the side effects are greatly reduced and the liquid surrounding my lung has reduced. I can breathe and talk normally.

I benefited from reading so many of the comments on this site that I want to share with you the products that helped me manage the side effects and my well-being. 

#1 – PRAYER – mine and others that are supporting me through this journey.

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 – it will likely sting but you must.

Skin – a fast lukewarm shower using a mild body soap [I use Safeguard], to exfoliate the flaking skin I use a soft facecloth and ‘OLAY’s Fresh Effects’ – it is a face product so it is mild on body skin.

Face Wash – OLAY cream cleanser – is mild and moisturizing. I follow with a toner to remove flaking skin – Neutrogena is an alcohol free toner.

Moisturizing your skin – for my face I use Lancôme SPF 30 face moisturizer – lotion and 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.

EYES – to combat and sooth the dryness ‘Refresh Plus’ lubricant eye drops a few times throughout the day and before sleep. A cool wet cloth to cool for a minute and then apply a warm compress ‘Bruder’s microwave activated eye hydrating compress’ for 3-5 minutes – this eye hydrating mask really works.

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. So far I have not 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 so I drink more.

Sunscreen – Neutrogena Ultra Sheer Dry Touch SPF 55. It goes on dry and does not feel greasy even in the heat of the day.

LIPS – mine are so dry! I use ‘Vichy intensive care for dry lips’ and ‘Sally Hansen Lip Lab Clinical Treatments’.

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 – I color my hair and before too long it became dry and the scalp was flaking. 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 my hair is soft and looks natural.

If you are reading this – you or someone you love, are trying to manage your way through a treatment – I pray that you find the answers to your needs and that you also find the peace and strength to carry you through your journey. May God bless you!

In April 2014 I was diagnosed with Stage 4 NSCLC. It had metastasized to my lump nodes and pleural membranes around my lungs; I was functioning with only 1 and a quarter lung capacity. The only symptom I had was a persistent cough for about 3 months, then things changed quickly, I had trouble breathing and could hardly talk. I am 61 years of age, a nonsmoker, fair sensitive skinned and 124 pounds. A targeted drug was my best option and Tarceva at 150 mg was prescribed. On day 8 through to day 21 the side effects started to present and escalated; a nasty sore rash all over my head, neck, back and chest - even in my ears and nose, diarrhea, my eyes were burning red, weeping, sore and sensitive to light, FATIQUED, sensitive mouth, hair started to thin out, skin peeled from head to toes. After a 20 day rest, I restarted Tarceva at 75 mg. As of this writing the side effects are greatly reduced and the liquid surrounding my lung has reduced. I can breathe and talk normally.

I benefited from reading so many of the comments on this site that I want to share with you the products that helped me manage the side effects and my well-being. 

#1 – PRAYER – mine and others that are supporting me through this journey.

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 – it will likely sting but you must.

Skin – a fast lukewarm shower using a mild body soap [I use Safeguard], to exfoliate the flaking skin I use a soft facecloth and ‘OLAY’s Fresh Effects’ – it is a face product so it is mild on body skin.

Face Wash – OLAY cream cleanser – is mild and moisturizing. I follow with a toner to remove flaking skin – Neutrogena is an alcohol free toner.

Moisturizing your skin – for my face I use Lancôme SPF 30 face moisturizer – lotion and 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.

EYES – to combat and sooth the dryness ‘Refresh Plus’ lubricant eye drops a few times throughout the day and before sleep. A cool wet cloth to cool for a minute and then apply a warm compress ‘Bruder’s microwave activated eye hydrating compress’ for 3-5 minutes – this eye hydrating mask really works.

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. So far I have not 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 so I drink more.

Sunscreen – Neutrogena Ultra Sheer Dry Touch SPF 55. It goes on dry and does not feel greasy even in the heat of the day.

LIPS – mine are so dry! I use ‘Vichy intensive care for dry lips’ and ‘Sally Hansen Lip Lab Clinical Treatments’.

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 – I color my hair and before too long it became dry and the scalp was flaking. 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 my hair is soft and looks natural.

If you are reading this – you or someone you love, are trying to manage your way through a treatment – I pray that you find the answers to your needs and that you also find the peace and strength to carry you through your journey. May God bless you!