Bone pain since starting tarceva - 1249840

delialolly1
Posts:126

Hubby is experiencing severe bone pain in the arm, just above the wrist area..it comes, is severe and then gone. Same in bone behind neck. also, which stage is T3N1M1a

thanks for this great site...most of my questions have been answered going through these posts

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Reply # - November 3, 2012, 04:28 PM

catdander
Posts:

Hello delialolly, Welcome to Grace. I'm so sorry your young husband is going through this. I'm not aware of bone pain being a symptom of tarceva but the doctors say just about any side effect is possible when taking anti cancer drugs. However if your husband has a tumor in one of the areas of pain it's very possible the cancer causing it. The tarceva may need more time to begin working and easing the pain.

You're husband's doctor should be contacted about the new pain. Both because the doctor may want to check it out more closely and definitely the pain can and should be controlled.

I hope he feels better soon,
Janine
forum moderator

Reply # - November 3, 2012, 05:54 PM

Dr West
Posts: 4735

I'm glad GRACE has been helpful. I'd encourage you to search for any info you're looking for -- there's a lot here. Also, just let us know if you have a more specific question, and we can try to to give our best insight. I do agree with Janine that it's very appropriate to keep his doctor informed about any new pain, especially if it's more severe.

Good luck.

-Dr. West

Reply # - November 4, 2012, 11:23 AM

delialolly1
Posts: 126

Thank you so much. Will contact the oncologist in the morning. Its scary, this journey, and the questions to ask. I find that I always fear the worse. Nevertheless, this site is a great help. Take care

Reply # - November 4, 2012, 11:37 AM

delialolly1
Posts: 126

Tarceva pamphlet state so many meds that cannot be taken because it interacts. I spoke to the pharmacist the other day (got mucain because of hubby's hiccups and reflux) and he told me its about taking the meds an hour or more after the tarceva. Just wondering>>>>is it the case for all of the meds indicated as interacting with tarceva...or is there some general rule....LOL guess its a strange question but was thinking maybe there is some general 'rule' so i dont have to hop to the pharmacist each time I look for meds. Does anyone have any other remedies for the hiccups and reflux please? And what causes these?

Reply # - November 4, 2012, 02:00 PM

catdander
Posts:

I understand what you mean by not really wanting to know the answers. But I also think that not knowing and worrying is worse than finding out the worst. If that makes sense. Either way you are very brave to be looking for the answers. This journey is scary and brings out traits I think most of us are unaware we have.

Diet may play a part in lessening acid reflux as well; tomato, caffeine, cola, surgar, refined flour, and greasy foods are usually culprits. But everyone is different. I'm not aware of other drug interactions but I'd still ask when trying something different. Many people call the tarceva hotline pharm when they want to add something that the oncologist isn't aware of (taceva manufacturer keeps a more up to date profile and it is relatively new). I always ask though.

Much of this is my untrained theories and to my knowledge not proven but as for the causes, many people believe a post nasal drip caused by tarceva causes irritation to the esophagus, once the esophagus is irritated reflux is easily more pronounced, which causes erratic breathing and hiccups. But often you just don't know why some symptoms present and deal one by one.

I make a list once I have more than 3 things to buy at the store, so when it comes to asking the oncologist questions I write them all down. Else I'll surely forget.

Please let us know how the conversation goes,
Janine

Reply # - November 4, 2012, 02:44 PM

njliu
Posts: 142

I am a hiccup prone person for the last 20 years or so. Triggered by drinking cold beer, spicy foods or no apparent reason. My simple remedy is taking some sweets which work miraculously for me. I always carry a few Werther's Original with me at all time. I also developed reflux problem and Barrett's Oesophogus lately and have been taking Omeprazole on a long term basis. Hope this info can be useful. Take care.

Reply # - November 4, 2012, 04:38 PM

Dr West
Posts: 4735

There are various medication for hiccups, and the most common one's I and many others use are Thorazine (chlorpromazine) or baclofen.

There are certainly many drugs that interact with Tarceva (erlotinib), but some are problematic no matter when they are taken, and others are advised to not be taken within about an hour of the Tarceva. The drugs that reduce stomach acidity, like Zantac or Tums, etc., are the ones that shouldn't be taken right around the time of Tarceva. Other drugs for gastroesophageal reflux disease (GERD) that are "proton pump inhibitors" (PPIs) -- such as protonix, prilosex, prevacid and all have scientific names that end with "prazole" -- work around the clock and are advised to not be taken with Tarceva or other oral EGFR inhibitors even if taken at a different time of day.

The many other drugs that can interact with Tarceva generally alter the metabolism of the drug by the enzymes in the liver. These interactions generally aren't influenced by the times at which these agents are taken.

-Dr. West

Reply # - November 5, 2012, 01:21 AM

delialolly1
Posts: 126

Thank you catdander. My feeling is that I will wait on hubby to give the clue for the conversation. I also take it that its a process. First time after 22 years of marriage that there is something we dont talk about. Meanwhile, we carry on and think nice things...try everything..and celebrate small positives. We take the TArceva at six in the morning, so your advice of 12 hours will then work well, I think. I also take your advice that its best to consult before trying any meds, especially those listed as contra-indicated. Thanks for your time and input.

Njliu, thanks .....I will try those...the sweets you mention, are they sour ones because someone told me that something sour helped for him. Hubby's apetite is quite a problem and for now it certainly hasnt got to do with his diet...we do watch that. We spoke last night and actually realised that these hiccups were present even before Tarceva, while he was on Alimta. Its the reflux that has appeared since the Tarceva - maybe its by coincidence, I do understand that. I did mention it to the oncologist and now that it was discussed here, Im more at ease about it. As it is, every new thing that crops up, first thought: spread of the cancer!!! Thats why it is so nice to interact here. Thanks for sharing and taking time to read. Take care!

Thank your for that most valuable information Dr West - thats exactly the kind of information that I was looking for. I will remain wary and consult with the pharmacist whenever I doubt anything. I like your approach, Dr West, that you are able to assist accross such a broad spectrum of issues related to cancer.

Why is it that, with other posts, I get to see people's info at the bottom of the post but mine does not show? Or does it show on the reader's side? Kindly assist please. Thank you all so much

Reply # - November 5, 2012, 02:59 AM

certain spring
Posts: 762

I love Werther's Originals! Quite the thing.
Delialolly1, I am sorry about your husband, but hope the Tarceva will help him.
You asked why your info is not showing up - here are links to some tips and a help forum:
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature
http://cancergrace.org/topic/profile-bio-avatar-forum-signature-tips-su…
On the bone pain, I doubt it's got anything to do with the Tarceva, especially since your husband has only been taking it for a few days. As Janine says, it takes time to get to work. I didn't see any side effects for a week or more.
As to the other medications, it is easy to feel spooked by that lengthy list, but the drug companies are covering themselves for every eventuality. The main things to avoid seem to be the grapefruit juice and the PPIs, but I have taken many other kinds of medication while on Tarceva and haven't had any disasters yet.
Best to you and your husband.

Reply # - November 6, 2012, 02:37 AM

delialolly1
Posts: 126

Thank you njliu. I dont think we get those here, but I'll try other sweets then. ON the point of sweets....I was told sugar is not good for people with cancer? do you know anything about this? Best wishes.

Thanks certain spring. Still I cant get it right hey. There's nothing that says 'signature' . All the best to you too.

Hubby remains very tired and no apetite. Monday we will be doing blood work...I thing the onco wants that because at our last visit the white blood cell, magnesium and calium were very low. He was given a booster which does not seem to help in that area. Other than that he is kind of okay.

Reply # - November 6, 2012, 03:55 AM

catdander
Posts:

Thankfully sugar doesn't play a direct role in the growth of cancer though a good diet is important for everyone. Sugar can and in many opinions should be enjoyed. This is a link to a post on the subject, http://cancergrace.org/cancer-101/2010/09/02/does-sugar-feed-cancer/

Oddly enough there are 2 profiles on the site. One for the main site and the other a "forum profile". You want the latter. Click on your user name, delialolly1, to the left of any of your posts. That should take you to your forum profile. Once there click edit signature and paste your bio info there.

I hope that works,
Janine

Reply # - November 6, 2012, 12:56 PM

delialolly1
Posts: 126

So this afternoon I mustered the courage to call our oncologist and ask him a few questions. The call was to inform him that, since he last gave hubby the booster for the fatigue (due to low blood counts, if presume, and following on to the last Alimta), after a five day of no treatment, before starting Tarceva, the fatigue remained.ONco advised that we go to our family doctor to get another booster.

Then I decided to ask the burning questions and this is how it went:
1. Is hubby stage3a or 3b? Answer: 3b
2. Last CT showed shrinkage of the lymph node (although initial report stated a 'few lymph node involvement'. Question: What about the cancer in the lining of the lung? Answer: Its difficult to monitor that because its in a flat area and its difficult to measure it, monitor it.
3. Hubby had a severe pleural effusion (thats what took him to hospital). It was drained and took over a week to be at a level where they could actually discharge him (dont know if the discharge came as a result of us nagging and asking whats going on, why is it taking so slow. Hubby stayed in hospital for a month waiting for the drain to clear up. He was discharged with some fluid still in the lung (still in there today) but at least it did improve his breathing. Question: was there cancer cells in the fluid? Answer: Well there is cancer in the area where the fluid was.
So yes, I was very angry on hearing this. This site is the one that made me ask these questions because everyone knows the minutest detail of their disease and we didnt!! Well, my anger at the evasiveness of our oncologist has subsided
I would like to know what all this new info means for us. How does it change our initial approach of 3a? Especially the pleural effusion? Must add that hubby doesnt have serious breathing problems and a cough which isnt too bad.
Today is day 6 of tarceva and the rash has started. We are fine with that ....been expecting it.
Also diarea....for which we use immodium.
What now?

Reply # - November 6, 2012, 01:46 PM

catdander
Posts:

You are certainly getting stronger by questioning about details of your husband's diagnosis.
I don't understand the answer to the question about whether or not your husband had a malignant plural effusion. Perhaps a doctor here understands what you have relayed in the previous post, "Question: was there cancer cells in the fluid? Answer: Well there is cancer in the area where the fluid was."

I will ask a doctor to comment. You should hear back within a day.

Reply # - November 6, 2012, 02:12 PM

catdander
Posts:

This is Delia's biography stating husband's situation.

South Africa. Husband 46, dx 27 July 2012, adeno nsclc, stage 3, previous smoker, poorly differentiated tumor, stopped about a week or two before dx, alimta four times, showed shrinkage, then started on 31 October 2012 with tarceva 150mg, not sure whether EFGR was tested

Reply # - November 6, 2012, 10:17 PM

Dr West
Posts: 4735

I'm sorry to say that it really sounds to me like this is almost certainly a malignant pleural effusion. In the older staging system that was recently replaced, this was stage IIIB, though it was typically referred to as "wet IIIB" and treated the same as stage IV because it really has a comparable prognosis and isn't generally felt to be treatable with curative intent. So the primary treatment approach is systemic (whole body) therapies like chemo and oral or IV targeted therapies, but if the cancer has spread to the fluid outside of the lung, it can essentially travel throughout the body in the same way as if cancer cells were found in the liver or bone, etc.

-Dr. West

Reply # - November 7, 2012, 04:34 AM

certain spring
Posts: 762

It must be very painful for you and your husband to have to deal with this new development, especially when the oncologist had told you at the outset (I read your post on the "Cheerleader" thread) that there was a chance of a cure. And it is not that long since your husband was diagnosed, so you must both be still in shock.
You said the oncologist was vague and you obviously feel frustrated about the lack of clarity. I wonder if you might want to think about getting a second opinion, with a view to finding an oncologist who is easier to talk to? Dr Weiss wrote a useful post about second opinions:
http://cancergrace.org/cancer-101/2011/11/13/an:insider%E2%80%99s-guide…
I hope the Tarceva works well for your husband. I wanted to say is that although it is very difficult to deal with this kind of news, you will manage to deal with it together. Your love and your support will help your husband so much. Best wishes to you both.

Reply # - November 7, 2012, 07:04 AM

delialolly1
Posts: 126

Thank you catdander, Dr West and certain spring. Thank you for your response and the time you took to hear me out. Yes, I am devastated. Worse is, I am in this conversation without hubby's knowledge and have to process this and see which way forward. Its difficult, because it feels like cheating when Im in a discussion here and he does not know of it.....its my problem, I know, dont expect you to comment on it. I will see how best to deal with it.

I have seen the stories of the lung cancer survivors here on this forum, and while Im a taken aback by what I questioned and the responses Iv received, I will keep the hope high!! I am looking forward to the Tarceva's performance and am very positive that we will have a positive outcome from it.

I must tell you that hubby looks good.....definately doesnt LOOK sick. Still fatigue, no apetite and nausea, and, as he describes it, 'muscle weakness' but on the whole, he tries his best to be fine.

Not good news but very happy that I am on this forum. I find direction here.

Dr West and your team who started this forum, I wonder if you realise how you touch people's lives. I wish we were nearer to you.

Reply # - November 7, 2012, 02:16 PM

catdander
Posts:

If only I could not comment I'd probably not be moderating this board. :roll:
I was in the position of knowing my husband had moved from curable to incurable for about a week. I ended up telling him as he continued to engage me in conversation about surgery that was now no longer possible. Plus I didn't want him to find out at the cancer center in the next couple of days. I'm so terribly sorry you are carrying this information on your own but understand the wish to keep his hope of cure alive as long as possible. You will both learn that there is much more to hope for as you move forward.

Reply # - November 8, 2012, 01:29 AM

delialolly1
Posts: 126

catdander, you are such an inspiration. thank you for that. How is your husband doing. I see that he went on a treatment break....still on the break?

Hubby seems to look better every day. He returned to work last Tuesday, after about three months away from work. I think that also has much to do with him looking so good. We have this laugh.....since Monday morning we wake up looking for the Tarceva rash :lol: ......and we dont want anyone to tell us the rash does not necessarily mean the Tarceva is working.....we WANT to believe it and it gives us joy each morning to seach for more of the rash :-D . HUbby also eats better....we do small little meals throughout the day. The only new complaint he has is that his nose pains, right up the bridge of his nose, as well as his nostrils. We wont blame it on the poor Tarceva!!!

Anyway, our next visit to the oncologist is on 30 November....I think we should do some scans again.....or what do you think. ON this point, when hubby was first diagnosed in July, they did actually do a CT, a bonescan (which was clean) and an ultrasound of the abdomen (which was also clean). After that, during our three-weekly visits, I think we did xrays twice. What do you think we should be asking for on 30 Nov?

From now on, I will ask for a copy of each of these scans.

Take care, and keep on brightening the lives of others. Much love!

Reply # - November 8, 2012, 04:21 AM

catdander
Posts:

Thank you so much for the vote of confidence. D is still on a treatment break. He was still without evidence of disease (NED) after 3 months without treatment so we are humbled to be so lucky.

If is standard practice to scan with CT at 3 month intervals while on treatment or more often if there is concern of worsening. Below is a link from the FAQs sections about assessing response. Plus there is a seemingly infinite amount written about side effect management while on tarceva much of which is discussed in the EGFR section of the forum.

All the best hopes,
Janine

http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…

Reply # - November 10, 2012, 08:43 AM

delialolly1
Posts: 126

Something I forgot to mention at the beginning. At diagnosis time, hubby's CEA count was 10 and in October it was 6,6. That's not too high hey? Anyway, one more question: This that hubby's is a poorly differentiated tumor....how do we go about monitoring it? Is there really now way to measure it and to know that we want it to go from here to there?

Hubby continues to be very tired. There are some signs of a rash starting and also dry skin. And the D. I think his apetite is improving......for the first time he actually says the word 'hungary'. We remain concerned about this pain he gets just aboe his wrist (a terrible pain that comes and goes...but not every day) and then also this sorenessof his nose - the nostrils and the nose bridge area. Its painful when touched, he says.

We will be doing some bloodwork on Monday, hoping that his potassium and magnesium levels would have picked up. Given what I described, as well as the fact that our next onco appointment is only on 30 November, should we be asking for other bloodwork...apart from the potassium and magnesium?

Thanks so much. Take care.

Delia

Reply # - November 10, 2012, 08:58 AM

delialolly1
Posts: 126

Dear Tammy

Thanks for sharing that part of your journey with me. I will carry that beautiful message with me as I travel my journey.

All the best...take care.

Reply # - November 10, 2012, 10:45 AM

catdander
Posts:

I'm not sure what you're asking about monitoring. Your husband will be monitored as in the post I linked to above. The more differentiated the cells of the tumor the more they no longer look like they did when they were normal. Kind of like reverse evolution. So poorly differentiated cells don't look like the lung tissue that is was morphed from. It is related to less good outcomes than well differentiated cells but have little to do with the individual person. For instance my husband's cells were poorly differentiated but he is doing well as a person with stage 4 nsclc.

There's lots written about how to care for side effects of tarceva skin problems (you may need to log off to get results from the search...a browser thing). The first line of defense is super moisturizing. The nose tenderness sounds like how my husband described his when on tarceva. One really great thing about tarceva is it doesn't usually cause problems with blood levels like chemo.

I hope you can get the wrist pain figured out and stopped, certainly something to talk to his doctors about.

All best,
Janine

Reply # - November 10, 2012, 10:57 AM

delialolly1
Posts: 126

Thank you Janine. We are sorted with the Tarceva skin situation. Trying all sorts of moisterisers!

Regarding monitoring: According to our onco, there is cancer in the lower right lobe..where the PE was. We know that the one lymphnode showed shrinkage...its monitored by the scans. So how wil we know that the lower part shows a response to treatments? Would it shrink? Because the onco said its difficult to measure the size......said something like "the spots are scattered and can't be measured"

Reply # - November 10, 2012, 09:31 PM

Dr West
Posts: 4735

It should be still be possible to see that the disease is visibly growing or not. We would love to see shrinkage, but seeing no growth is a favorable finding even if it isn't shrinking. The other finding that would suggest progression is one or more new areas of disease. Otherwise, we're happy to see stability of an advanced NSCLC.

-Dr. West

Reply # - November 12, 2012, 10:10 AM

delialolly1
Posts: 126

Dear Janine

I think we've finally figured out the issue of hubby's sore nostrils .......you mentioned somewhere that your husband explained something similar while on Tarceva, if I remember well. Anyway, the Tarceva white heads came with a bang....we noticed that hubby's nose is slightly swollen and on closer inspection it looks like its the very same white heads causing the tenderness....the pimples are under the skin and we suppose therefore the swollen appearance.

Thanks for your input there but we will certainly be watching the situation.

Take care,

Delia

Reply # - November 13, 2012, 01:24 PM

delialolly1
Posts: 126

Today is day14 of Tarceva for hubby. The rash is bad but really managable. He really look much better to me...the fatigue is less, his apetite is improving (I'm even happy that he craves burgers and french fries and ice cream), he gained two kilos. Really an improvement on the quality of life, after Alimta (I still love Alimta because it made the tumour shrink!). We got the results of yesterday's magnesium and potassium and the test for the kidneys and all looks good. 30 Nov is our date with our onco. We'l do a bone scan becasuse huvvy complained of the wrist and leg pain and also the lower back pain. Lower back pain only when he stands for long periods. I think Tarceva is doing him good.

I mentioned that he had pleural effusion, that was drained back in July and August...and some fluid still remaining but after the drain he never had any breathing problems. He had a slight cough but really not too bad.

Our onc called today. I do think that he is paying us more attention now since I asked him those questions about hubby's diagnosis. I just feel so informed and more on top of things since joining Grace. Thank you all.

Reply # - November 13, 2012, 03:52 PM

catdander
Posts:

So glad he's feeling better. I'm pretty certain most doctors take the lead from patients and caregivers about how in depth they go with details. Glad you found Grace to help with your cancer education, no matter how little we really want to need it.

Reply # - November 13, 2012, 06:17 PM

Dr West
Posts: 4735

Glad you're feeling better about things, and especially that your husband seems to be doing better. And I'm always gratified to think we're helping here.

-Dr. West

Reply # - November 15, 2012, 12:06 AM

delialolly1
Posts: 126

Thank Dr West, Janine and ....yes!.....yipppeeee yippeee yayyyyyy Layla :).

I don't know how to change my topic but I don't like it anymore....sounds rather negative to me. I'm going to open a new discussion or thread under Update on Delia's husband (Layla-inspired ;) ...hope she doesn't mind!

Blessings all!

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