Update on Delia's husband - 1250291

delialolly1
Posts:126

Hi all

My husband, P, has the Tarceva rash very badly, especially the face area. We called the oncologist who suggested skipping the Tarceva (150mg) for 4 to 5 days. And that's what we'r doing right now.

I don't suppose the cancer can do anything bad for those few days and wish to trust our onco's advice.

Best wishes everyone!

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Reply # - November 15, 2012, 02:51 AM

certain spring
Posts: 762

I am sure we'd all defer to your husband's oncologist, although a common strategy is to lower the dose rather than stop the Tarceva altogether. The rash is usually worst at the very beginning, as the body gets used to the drug. It should get better with time but I know it can be fairly awful at the outset, both from my own experience and that of others I have met in the clinic.
I too had it badly on my face and the only thing that helped was a topical antibiotic (people here have mentioned doxycycline and Bactrim; I use one called clindamycin). You might want to look at the Tarceva Masterlist - some of the posts are old but the advice on skincare still holds:
http://cancergrace.org/forums/index.php?topic=618.0
Also Dr Lacouture's discussion of skincare is invaluable - he is a dermatologist at MSKCC in New York. The Q&A is excellent:
http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-…
http://cancergrace.org/cancer-treatments/files/2011/09/qa-dr-lacouture-…

Reply # - November 15, 2012, 06:32 AM

Dr West
Posts: 4735

Taking a break from the Tarceva (erlotinib) is exactly what I and many, probably most, oncologists would recommend, and after that many patients will do better either on a lower dose or sometimes continuing on the same dose.

Dr. Lacouture's insights here are very valuable. Thanks to certain spring for the links.

-Dr. West

Reply # - November 15, 2012, 12:27 PM

delialolly1
Posts: 126

Thank you dr West and certain spring. We live 400km from our onco and I guess its more to do with the logistics of getting the lower Tarceva dose...in fact, our oncologist did mention that. We feel quite comfortable now that you are also in agreement. Even P is happy - I showed him your responses and we also had a look at the links provided by certain spring and will consult with the pharmacist tomorrow.

Its not a cliche that knowledge is power. Personally, I feel more 'in control' and its a great feeling! P is not quite in the mood to join Grace but its okay....I share the info with him anyway. Until yesterday he was very worried about the rash...feared its more of an allergic reaction to Tarceva than the common side effect but we're both happy with where we are now.

Blessings, everyone! #do the Tarceva jive, happy face#

Reply # - November 16, 2012, 05:32 PM

sherrys
Posts: 212

Delia, I just wanted to share my experience with you. In September, I started on 150 mg of Tarceva and had a horrible skin reaction - white puscles all over my face and body that would break open and bleed, uncontrollable diarrhea, etc. My onc. took me off of Tarceva for 2 weeks to let my skin heal, then started me on 100 mg. Everything was great for 2 weeks, but then my hair started falling out and I got terrible hives. My upper lip was so swollen it was touching my nose! I had to have IV benadryl and I think hydrocortisone. He took me off of the Tarceva for a few more weeks.

Next week we are trying a different approach. He is having me start on 25 mg for 2 weeks and if that goes well, go up to 50 mg for 2 more weeks, then eventually work up to 100 mg.

My onc. has assured me that these breaks will not be harmful. I hope your husband can find a dose he can tolerate!

Reply # - November 16, 2012, 08:32 PM

delialolly1
Posts: 126

Dear Sherry

Thank you for sharing that information with me. It is very reassuring because P is getting very anxious about being off the Tarceva for these few days. I wil show him your post because I think at the back of his mind that he still sort of worries that his reaction to Tarceva is not 'the norm'. He still suspects that he might be allergic to it. I am so touched by your thoughtfulness...that you actually took time to share your experience to advise us.

All the best to you in your journey.

Blessings!

Reply # - November 16, 2012, 08:43 PM

delialolly1
Posts: 126

Hi everyone

Today is the third day that P is off the Tarceva. Last night he broke he had fever and actually got the cold shivers. Do you think its anything to worry about? It lasted for round about an hour and was over, until even now.

Please pardon me for bothering with such a small matter. Its just that its the weekend and I would not like to call our onco with something that might be trivial.

Blessings to all!

Reply # - November 16, 2012, 09:06 PM

Dr West
Posts: 4735

I'm afraid yours is really the kind of question that we absolutely can't answer: the people who should be clarifying whether something is a concerning problem is the doctor treating him, not people on the internet who don't have the details. Legally, it is not appropriate for people here to be saying whether a problem is significant enough to seek medical attention for it.

-Dr. West

Reply # - November 16, 2012, 09:13 PM

delialolly1
Posts: 126

Thank you dr West and sorry about the post. Its just difficult. Our onco is 400km away and our GP here at home is just not as clued up with LC as he is with most other things. Seeing that P is fine now, we will watch the situation and call our onc on Monday.

Reply # - November 17, 2012, 01:21 AM

certain spring
Posts: 762

Your GP is about to get a crash course in dealing with lung cancer! There will be lots of these kinds of worries, and it really helps to have someone - lung nurse, GP, district nurse - that you can ring. If you can find such a person, life will be easier and less stressful. My peace of mind has rocketed since my sainted GP gave me her mobile number.

Reply # - November 17, 2012, 01:41 AM

delialolly1
Posts: 126

I read you loud and clear certain spring. Our GP is a great dr and has been wonderful throughout the years. However, about the issue of lung cancer, he is very much like, what someone said here on Grace, seeing statistics and not the individual. He told me that his own dad passed away from lung cancer and there's some cynism there - for which I don't hate him, and sort of understand. Unfortunately that's the approach. I'm also fortunate to also have his mobile no but I have some things I just feel he just won't empathise with. Even P also mentioned that, since the LC he is not comfy with our GP. So yes, we will be looking around for another GP to journey with us and actually have someone in mind. We don't have the luxury of institutionalised nurses around here but again, we have friends who are general nursing sisters who are kind enough to lend and ear.

Thanks for YOUR ear (or eyes). P is up and about today, doing some chores around the house that he's not been able to attend to in a long while.

Blessings to you and take care!

Reply # - November 17, 2012, 02:00 PM

delialolly1
Posts: 126

Today has been a good day. But tonight I'm just feeling very bitter about this cancer. Sorry, I'm sure tha is the first negative post on this site but I'm angry and bitter about this cancer!!!!!

Reply # - November 17, 2012, 03:41 PM

certain spring
Posts: 762

Of course you are going to feel bitter sometimes. The whole thing is very unfair, and it is impossible to be positive 24/7. In some ways it can be more stressful for the partner than for the person with the cancer. I hope you have friends and family you can talk to and vent to.
The mention of a fever prompts me to ask if your husband has had a flu jab? It means you have one less thing to worry about (assuming his doctor agrees).

Reply # - November 18, 2012, 12:12 AM

delialolly1
Posts: 126

Thank you layla and certain spring. I do feel very alone. All family and friends still believe he will be cured and I just cannot tel them otherwise. Tried speaking to my brother last night who said I must stop googling and that I must 'stay positive'. It helps to a certain extent that I ca speak here.

Blessings to you!

Reply # - November 18, 2012, 12:26 AM

delialolly1
Posts: 126

I do sound like a nagger and ungrateful, don't I! Let me add that, yes, I do have a very strong family and friends support network

Reply # - November 18, 2012, 02:39 AM

certain spring
Posts: 762

You should absolutely feel able to speak freely here.
It's a very personal thing but I have found it a great relief to be honest with people. It's a huge burden on you to be keeping a secret. Forgive me for asking but is your husband now clear about the situation?

Reply # - November 18, 2012, 04:25 AM

delialolly1
Posts: 126

My husband and I have not spoken about it. However, he is often in deep thought lately and sometimes he talks about 'if I beat this cancer'. It also saddens me when he talks about 'when I'm no longet on treatment'. Hy is an intelligent and sober minded person, though and he does google sometimes. I don't know if, like I used to be, he somehow just read the parts that are good news because there are all these misleading sites on the internet, which I also bought because of our onco's initial statement that 'there is evan a chance of cure'.

We are in a difficult time now also because our son is in the middle of his final school examination.

By the way, his face looks much better and the swelling has subsided a lot....just the pimples which also seem to clear up...they look less 'potent' (lol) as I thought of it in my mind's eye.

Reply # - November 18, 2012, 04:50 AM

tammy11201959
Posts: 19

Delia, your husband is processing. He has so much to think about, his diagnosis, how to keep up hope, what's going to happen, and most of all how to protect you!
There is always hope! It's just nice to see all the cards you are playing with, Google till your fingers bleed. The more informed you are, the more confident you'll be when making decisions with your husband.

Reply # - November 18, 2012, 05:13 PM

sherrys
Posts: 212

Delia, I also wanted to mention that my oncologist prescribed me oral minocyline (not sure of the spelling) and a topical gel that has worked wonders. Maybe you can ask about that?

Another reassuring thing that my onc. told me is that the rash from Tarceva is generally associated with the Tarceva working. When he saw how awful my rash was, he said, "the good news is that it looks like Tarceva is kicking the cancer's ass".

Also, my rash has not cleared completely, but now instead of being bright red and having white puscles, it is flat and red and almost completely gone. Remember that clearing this rash started in October. It is easily covered on my face with make up, although your husband may balk at that idea. ;)

Reply # - November 20, 2012, 01:40 AM

delialolly1
Posts: 126

P started Tarceva again today. We are a little concerned that the breaks wasn't long enough but are now in agreement that he continues. Our onco feels so too and wants P to complete his tabs to enable him to get a proper finding. It makes sense to us.

This question is for dr West: P's cancer is in the lining of the lung ...that's where it started. What could be possible reasons not to do surgery to remove either the entire lung or the lower part of the lobe where the cancer originated.

Thanks so much.

Reply # - November 20, 2012, 06:57 AM

catdander
Posts:

I hope you'll let me help you with this question. It happens to be frequently asked enough to have its own FAQ
I think we've discussed before that a malignant pleural effusion is considered stage IV because it requires that cancer cells be in the blood system. The first link confirms this about PE and the second link Dr. West explains in depth what that is and how it effects treatment.
http://cancergrace.org/forums/index.php?topic=9386.0

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

It's helpful for you and your husband that you are learning enough to understand his treatment. It's an overwhelming amount to take in but it will be worth it to you both.

Janine

Reply # - November 20, 2012, 07:41 AM

delialolly1
Posts: 126

Hi Janine,

Thank you for the response. My aim is not to irritate by asking what seems like the same question over and over. This thing is on my mind 24/7 and today I was just wondering.....seeing that the cancer is only in the one (right) lung, why not operate. But I do understand that in our case, even if its in the one lung only, there is the issue of the pleural effusion....which, like dr West said earlier, was probably malignant. I was just also thinking that the abdominal sonar, the bone scan and the brain MRI were all clean, but yes, I also understand the micro-what-have-yous that could be lurking elsewhere.

Anyway, we will see our oncologist on 30 November, and do the bone scan, like I said earlier and we are a little anxious and yet excited to see whether Tarceva has been kind enough to us to kick the big 'C's' butt.

Soooo many questions.....

Blessings!

Reply # - November 20, 2012, 08:00 AM

catdander
Posts:

I know and can sympathize. You don't need to explain your wanting to understand all the options. It seems your main question is was the pleural effusion malignant? I think that's the difference between curable and not. However the doctor is treating as if it was malignant and he's stage IV. I think you'll get those questions answered once and for all next week because you will be much more informed. Hang in there and ask away, be ready for that appointment. Since I feel like the door keeper I wanted to explain there wasn't a need for a doctor for this particular question.
you're doing well...

Reply # - November 20, 2012, 02:17 PM

Dr West
Posts: 4735

Janine's exactly right. It's a common question to ask, which is why it's in our FAQ section, but the answer is that surgery isn't done because it wouldn't help if there is cancer in the lining around the lung, including microscopic cancer cells in the pleural fluid. The fact that the scans don't show cancer doesn't matter -- they aren't going to see microscopic disease, but that same disease is what causes the cancer to spread to other places. It's not that different from someone with leukemia -- there aren't scans that show some measurable tumor, but the cancer cells are microscopic and can travel in the blood to cause trouble.

-Dr. West

Reply # - November 23, 2012, 12:34 AM

delialolly1
Posts: 126

Good day everyone

I hope that you all enjoyed a blessed Thanksgiving.

I pick up something in a discussion here ond Grace, which prompts me to ask this question: My husband's firt treatment was Alimta\cisplatin. He had four rounds of this infusion. Our onco then said that he could either continue with this combo, or switch to Tarceva. By then, it was clear the P responded well to Alimta, or versa vice because the scan showed shrinkage. Our onco mumbled something about chemo doing well and then there might be resistance to it. By then, we had already heard of the wonder drug, Tarceva, and had anyway originally asked him about it...his response was that it wasn't a relevant treatment to my husband, YET. Anyway, we concluded this discussion by indicating that we would then like to go to Tarceva - this decision was based on what we had heard then about the 'wonder drug' and also by onco's mention of the posibility of Almimta becoming resistant. My question is this: Should we not have stayed with Alimta until it actually showed resistance? I am asking this because, just say Tarceva stops working for my husband, would this same combo be a possible and appripriate next treatment? Is it common to move on to a next treatment, like we did, even if it worked well?

Thank you

Blessings to all.

Reply # - November 23, 2012, 02:46 AM

certain spring
Posts: 762

I don't see why you couldn't go back to Alimta - Dr West has written recently about how assumptions in oncology are changing. It used to be the case that doctors were wary of going back to a previously used treatment. Now, however, if someone has done particularly well on a previous form of chemo, some oncologists will consider returning to it.
I hate to be a wet blanket but I would caution about regarding Tarceva as a "wonder drug". It is in some situations, but not always. Have you thought of inquiring about whether the EGFR test was done, which I see from your signature was uncertain? More and more labs will also test for the "ALK" rearrangement (a mutation that makes a patient a good candidate for crizotinib/Xalkori) at the same time. Very best.

Reply # - November 23, 2012, 03:11 AM

delialolly1
Posts: 126

Hi certain spring.

Thank you for your response. I am happy that Alimta remains an option should Tarceva not have the desired outcome. I was just trying to explain what our first knowledge of Tarceva was, therefore the 'wonder drug'. Between then and now, and thanks to you all on Grace, I am much more informed and it is therefore that I am raising these questions. I do pick these up in other discussions but I have to ask them here to assure myself that my understanding is correct.

I am not aware that P was tested for the EGFR. I have gone through all of the reports but see nothing, unless I miss something because I have to translate from what I see here and what's in the reports as they are not in English. Anyway, this is one of my list of questions at our next onco appointment.

I can tell though, just from observing P, that he does look good, no pains (except the bone or muscle pains sometimes), his appetite has improved remarkably. Basically its just the fatigue bothering him at this stage.

Blessings!

Reply # - November 23, 2012, 03:28 AM

certain spring
Posts: 762

That's great to hear. I hope the rash is not quite as bad this time.
If they've done the test, it will have definitely been recorded and would be in your husband's notes. Sounds like they haven't done it.

Reply # - November 23, 2012, 05:32 AM

Dr West
Posts: 4735

I agree that in the absence of clear progression on Alimta (pemetrexed), it's very reasonable to either continue on it or to return to it later, though there isn't any formal study of the latter option as a clinical approach. You can learn more about these concepts from posts about the PARAMOUNT study, if you want to use that as a search term here.

And yes, certain spring is right about our reluctance to label Tarceva (erlotinib) or really any systemic treatment as a "miracle drug". While it can be extremely beneficial for some patients, they are only a minority of the broader population of people with lung cancer, and unfortunately the beneficial effects don't last forever even in the major beneficiaries. Thinking of a treatment as a "miracle drug" will always lead to disappointment in the long run.

Good luck with his current treatment, and I agree that Alimta remains an option to consider.

-Dr. West

Reply # - November 26, 2012, 12:37 PM

delialolly1
Posts: 126

Hi all

I just thought to drop a note about P's progress. This is the 6th day back on tarceva after the five day break. His face has cleared up and while he is quite energetic, the expected fatigue sets in now and again. We were able to do some shopping...a full day, and he continues to attend to many things like getting our son's car fixed etc. He had a full day at work...which included driving quite a stretch, getting the job done and travelling back home again. He eats very well, has no discomfort or pain. The tarceva itch and diareah is quite managebale. We are so happy about this!

We are holding thumbs foR the bone scan on Friday!

Blessings to you all!

PS..we laugh about the coarse hair as we count our blesssings!!!

Reply # - November 29, 2012, 02:20 AM

delialolly1
Posts: 126

Hi all

Just got results of blood back. While I know that CEA is not a reliable marker we are quite happy that the CEA has gone from 6,6 (last test) to 5. Originally, at diagnosis it was 10. I know this is a silly question but if not answered, its ok! Can we take this as good news? Or maybe, is it possible that the CEA shows a drop while therE could be progression?

Thanks.

Blessings!

Reply # - November 29, 2012, 09:28 AM

certain spring
Posts: 762

I'm pretty sure the GRACE doctors will say that they don't use CEA markers as reliable indicators of what is going on. (In fact, I see that Dr West has just written on another thread "You’re right that serum tumor markers like CEA are not considered to be a reliable indicator of the effect of treatment".)
A scan is much more useful, as explained here:
http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…
For what it's worth, no one has ever told me my serum tumour marker numbers! All best.

Reply # - November 29, 2012, 10:02 AM

delialolly1
Posts: 126

Thanks certain spring.....I checked the link. I do understand about CEA not being very relaible. Our next CT will only be in two months time and I guess we are just a bit over anxious. I see in the link one dr talks about the general state of health and that CEA in isolation cannot give a reliable indication. My husband gained weight, eates well and generally looks much much better....no discomfort or pains. Fatigue sets in early evening. I know I repeat myself with this...pardon me...its nicE to talk about it. Anyway, the low CEA and his improved general health make us feel very optimistic. I guess this is more of an emotional than a scientific question.

Tomorrow is the onc appointment and the bone scan. Will keep you updated.

Blessings!

Reply # - November 29, 2012, 11:02 AM

catdander
Posts:

Delia, It sounds like you have plenty of cause for high hopes that all is working as planned. That's about all we have to go on as we live from scan to scan. It's such a highly emotional life these days I know. I'm so lucky that D is doing so well yet we struggle everyday with the unknown. Somehow our bodies learn how to move forward. Mine works best with antidepressants, I never thought I'd feel that way but they really work almost immediately for me and I stay on quite a low dose. Not suggesting anything just saying it's what works for me.

Hope!

Reply # - November 29, 2012, 12:14 PM

delialolly1
Posts: 126

Hi Janine

So very true what you saying. About antidepressants...I have a repeat prescription but have not done the repeat when my month's supply finished. I thought I was doing well but have just realised that it was probably the pills helping me LoL! Am stocking up again tomorrow again.

Talk about emotions! What a rollercoaster! But, like you say, our bodies seem to adapt. P and I were just talking about how fast the year went....seems like so long ago when we were in hospital, him with the drain that took a month ...I remember when I went to hispital in the mornings and first thing was eyeing the drain's content! And here we are today, days away from Xmas celebrations! These are blessings!

Hope your hubby is still doing well. Wishing you all the best.

Blessings....take care!

Delia

Reply # - November 29, 2012, 08:30 PM

catdander
Posts:

Thanks Delia, I went a couple of years before I even tried them but so glad I did and if I miss a couple of days I really know. But it's just a few tears before I realize I've missed a couple of doses and I'm not at all opposed to them. I thought I'd miss being sad, that I'd be cheating the feelings I should be having. :roll: Geez how wrong I was.

We live for the moment and I'm so lucky to have so many,
Janine

Reply # - November 30, 2012, 07:25 PM

delialolly1
Posts: 126

Oncologist's admin lady messed up our bone scan pre-authorisation and our medical aid (insurance) did not give approval when we got there. However, P's bloodwork is good. Onco says it sounds like the remaining fluid in the lung has cleared up - I want to second that, as a lay person, because he really has no breathing probs, even when he sleeps. Onco thinks that P is doing exceptionally well, given the weight gain and general state of feeling good. He said its ok...we can do the bone scan in January together with xrays.

Both P and I felt its good and we are happy with the situation. I just wish that P would allow us to celebrate these happy moments but he doesn't want to. Says he will do it when he is cancer free one day.

Anyway, my lesson learnt is to follow up every single day in the week prior to our visit, whetjher authorisation has been finalised with our medical aid. Can't believe I let this one slip.

Blessings to you all

Reply # - November 30, 2012, 11:03 PM

Dr West
Posts: 4735

It's too bad that you need to be so vigilant, but there are so many moving parts, and often so much additional paperwork these days, that it can often really help to be the squeaky wheel in order to get the grease.

-Dr. West

Reply # - December 10, 2012, 02:53 AM

delialolly1
Posts: 126

Hi all

It is now almost one and a half month that P is on Tarceva. He continues to do very well...eats well, is energetic and has no discomfort or pain, except for the diahrea(sp)-the only bad thing, for which he takes immodium (is there anything stronger than immodium that he can use, please?)

We had a lovely family event this past weekend and we all are so happy that P is doing so well! Its good to have him back :-).

We are looking forward to the next onco visit on 4 January 2012, where, finally, the bone scan will be done! We got the medical aid approval a week after the previous visit BUT...dr West, for sure I will make sure BEFORE the time that there is no mess up again. I'm wondering whether we should really have this scan....it was initially ordered when P had 'bone pains', which have since disappeared. I wonder, in fact if we shouldn't postpone P's onco appointment to the end of JAnuary and then do all the scans as we should since that would be closer to him being on Tarceva for 3 months!! Lol...pardon me, but I'm thinking as I type here! I feel strongly that we should wait but I'll check with P....maybe he will have better peace of mind if we do it 4 January.

The purpose of the post was just to update you, thank your for all the good thoughts and vibes and the information that keeps us in control of our situation and help us with decisions! Otherwise, it is to wish you all Happy Holidays !

Blessings,

Delia

Reply # - December 10, 2012, 06:39 AM

Dr West
Posts: 4735

Thanks for the update. I typically see patients at about 2 and 4 weeks after starting Tarceva (erlotinib), mostly to check on side effects, and then repeat a scan at the time of a visit about 8 weeks/2 months after starting it.

Good luck!

-Dr. West

Reply # - December 10, 2012, 07:08 AM

delialolly1
Posts: 126

Thanks dr West. Our last visit was on 23 Nov. This means that it works out just as you indicate above, should we keep to our 4 January appointment. I thought it would be too early to do CT's etc. But sounds like we can kEep it like that. Will anyway speak to oncologist tomorrow.

Blessings!

Reply # - December 10, 2012, 09:07 AM

catdander
Posts:

Delia,
It sounds like things are going well, well better anyway. I'm so glad to read about your life settling down and finding a normal sense of living. It's such a difficult trick to pull off when dealing with lung cancer.
As I write this I'm listening to an Al Jazeera piece about medical care in Syria and a woman not able to get chemo for her breast cancer. How horribly sad, perspective is everything.

Just an FYI and not to scold, it's important that we not tell anyone what they "should" do. As you know and as I want anyone else reading this no one can tell you what you should do in cancer care unless they are your doctors, they have all your information, including the patient's input. The word sends up red flags for our doctors for they are such easy targets for law suits when discussing these topics online. So please steer clear of the word should, 8-) thanks.

As far as when to scan. It may come down to deciding if it's a battle in which you want to engage. My husband's oncologist does PET scans every 3 months. There's many reasons why that's not the standard of practice. The one that bothers me most is that it is much more expensive than is needed. We don't have to pay out of pocket and for us cost the same as a CT but ordering this very expensive scan is one of the problems with the US healthcare system...the ordering of costly procedures that don't change the outcome of treatment decisions. I'll leave it at that. It sounds like your husband's scan is on a very similar if not same schedule as is a very standard one.

Below is a link to a discussion about skin care and treatment. It includes more links at the bottom of piece. http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-…

I hope your husband continues to feel better, that's great.
Janine

Reply # - December 10, 2012, 11:02 AM

delialolly1
Posts: 126

Thanks Janine. And sorry about THAT word! I re-read the forum guidelines and saw the warning..sorry....zipping up THAT word!

You are right about the scans, very similar here.

Take care....blessings!

Delia

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