hockeyma

Thank you for your information Dr West. I will follow up with your note on ILD to the nurse that comes in every day also as well so they may check for this. Heather

Well, turns out my husbands shortness of breath is mostly associated with a chest infection. So got a nebulizer for the home and the antibiotics and waiting the course of the weekend to see if that clears alot of it up. Oncologists advised that if the breathing does not get any better by Monday that he may be having some reaction to Tarceva and may need to stop for a few days. The biggest concern was perhaps of pulminary embolism as he had a huge nose bleed....yet no other signs other than the shortness of breath to go with it. Cancer is one h of a confusing disease sometimes. Just when you think things are getting a bit better something else wrong happens. Heather

Has anyone experienced shortness of breath when 1st starting tarceva. My husband has been on on it fo 10 days 150 mg. He has no rash yet. He is experiencing shortness of breath even with his oxygen and more fatigue. He has been having some night sweats again. I am afraid that it could be tumour growth but am hoping that the tarceva would be kicking in....anyone with any ideas please let me know. Thanks again, Heather

Congrats to you and your mom! I am very happy for you!

Grace, I hope in the days to come that you can find comfort from all of your friends here. This group of people is absolutely wonderful. It is so hard that you lost Carlton the way you did - but it happened and you cannot regret the time you had as I am sure that they were good days. Heather

I don't think you are alone - don't punish yourself for the way you feel. The whole thing is awful - and I feel like you too. Then I have to shake my head and say - ok not my body - not his fault...part of life. Easier said than done. Just talking and writing it out is the only way I know of and I don't do too much of the complaining thing cause people would think I was cruel. I have a journal I write in periodically - maybe try that - vent on paper like you just did here. You truly don't know unless you live it. I have some family support so that I can get out and work for a bit - but that ends when they fly home next week....DO NOT FEEL THAT YOU ARE A BAD PERSON.......you are a wonderful person for doing what you are - maybe you need others to tell you that too. I'll email you next time I feel same way and vent and you will know for sure then you are not the only one. Heather

When my husband was first diagnosed we tried essiac tea....we are just south of the area where the tea was actually first made up....so it is a somewhat common extra approach. Some people think it works...or at least helps. I don't know if it did anything for my husband or not. We did not stay on the regular schedule with it and currently he isn't on it. I have to check with the doctors if he can with tarceva. We went to the health food store and bought the actual ingredients and brewed it ourselves. We did check with the oncology department and asked if it was ok when he was doing gemzar/carboplatin as you do have to watch any extra supplements that you use when doing chemo. I don't think these are really classed as supplements - really just herbs - burdock root, sheep sorrel herb, slippery elm powder and turkish rhubarb root. We asked our family doctor and he says that there are people around that swear by it. If you ever get a chance - and you like to read - the book about the woman - Cassie - who developed it - is really good. Hope I was of some help, Heather

My husband had 5 days palliative radiation to alleviate shoulder pain. He has been doing great - his pain meds have reduced by 2/3rds since Feb 5th when radiation completed. Suddenly today he is freaking cause the "pain is back and the radiation has stopped working". Is this possible that the onset of pain could come back and come back just like that and not gradually? Also he just started tarceva on the 18th of February - could this have anything to do with the pain. I dread the word progression - just don't get how it could be that quick....any advise, hints or suggestions?

Grace Our deepest sympathy goes to you at this time. Heather and Gerald

Hi Hope the scans show all ok. Thinking of you guys. Heather and Gerald

Oh my, I can relate too. My husband has been between sleeping, sleeping and more sleeping for more than 3 weeks. He can barely climb the stairs to our room. His radiation was palliative. He has not had an urge to eat for 3 weeks either. Fortunately my sister in law is up from away to help us out. She is making him eat and trying to motivate him while I get cleaned up at work so I can work from home and run the kids to their sports etc. They say this is a part of the disease too. Where do you draw the line on knowing if it is the disease (bad thing) or the treatment (ok thing). Seems the more he rests - the lest he eats, more weight and muscle he loses and the weaker he gets. He is starting to come around a bit now - so maybe it is just timing....I sure hope so. Loretta - I know when my husband did his chemo the effects were cumulative - he was on it for 17 weeks when he bottomed out. He is on Tarceva now so we are hoping that will be more tolerable and give him time to build his system back up. Tanner - his last chemo date was Jan 5th and had time off then radiation for 5 days only ending Feb 5th. So if that is anything to go by it may help. Heather

I will chirp in here too - as for Avastin our oncologists said the same thing. Large mass and around pulminary arteries could have bleeding complications. My husband quit smoking a month ago and just started tarceva....we are praying it shows results. Maybe avastin would be an option if tarceva shrinks the mass.....Heather

Hi I was thinking and wondering about how you guys were making out too. My husband does not know any of his updated prognosis either., it is harder on me as I am sure it is harder on you in that aspect too. Stay strong - that is the big thing. We have no idea as to what to expect in the future - it is like a big roller coaster ride. Quality is important. All the best, Heather

Thinking of you and your family at this time.... Heather and Gerald

Hi It is really hard to quit at the best of times and now you are under stress it is worse. My husband was diagnosed on October 2nd. He didn't quit til January 25th when rushed to hospital cause he couldn't breath....never had a breathing issue til then. He was in hospital for a week and is on oxygen so doesn't smoke now, however he is now very lazy and mopey. I am not an anti-smoker (I myself still smoke 5-6 per day and trying to quit) but I can tell you that although my husband cut back from 50 cigerettes a day to 8 a day when he was diagnosed I think he may have still had a better response rate with his 1st chemo had he have quit completely (I read a study the other day that said gemzar may not work for those who still smoke). Also I know as our house has been smoke free for years - that going out in the garage in the winter would not help him from getting chest infections either. I would recommend trying whatever you can to quit now. If you are told that there is no more treatment that you can ever be given then that would be debatable - but as long as there is something that the medical profession can do for you I would try to quit.

Ernie hit the nail on the head - do find an oncologist who looks for success and future - not palliative and not one that is negative from the get go. My husband did Gemzar/Carbo and it worked ok for the 1st 3 cycles. Make sure you get scans done after the 2nd or 3rd cycle so you can ensure that there is progress. By the 4th cycle it did not work anymore. He was just prescribed Tarceva as a second line treatment yesterday (in Canada Tarveca is only covered as a 3rd line treatment). Mind you there isn't alot of "hope" for him either and he is "palliative" but you have to try whatever you can. He only quit smoking a month ago. Because he has lost so much weight the doctors feel that it is the most tolerable option for him. Best of luck. Heather

Hi Just an update on my husband for all of you whom have been so great in support and research. My husband went to see the specialists yesterday. There had been talk of him perhaps qualifying for a clinical trial however because he has lost so much muscle and weight he does not qualify. He is still weak and on oxygen. To even give him an IV chemo at this point would be pushing things so the doctors perscribed him tarceva instead of taxotere. Yes - I am happy about this - I have been following some good tarceva response stories.....for awhile. I think it is boiling down to Tarceva being our only hope. If he can have some success with it as well as gain back 20lbs and some energy it will open some more doors for him. We will pray and hope for the best - that is all we can do now. Thanks, Heather

I am so sorry to hear about what you, your children and your husband are now going through. Prayers are with you all. Heather

My husbands cancer progressed very quickly - before diagnosis - they couldn't believe how much he had with such little indication. The fact that his tumour biopsy proved to be neuroendocrine is I am assuming the reasoning for the quick progression. Gemzar and carboplatin did not work as 1st line. For the radiation which was classed as palliative they did his right lung and his chest and mediastinum. There does seem to be symptom relief of the pain in his shoulder as it is reduced. His shortness of breath is improving also and he is on and off the oxygen now. Gerald has however lost quite a bit of weight and muscle. I guess the best chemo will be one that targets the type of tumour???as well as being one that is easiest on his health which he is trying to recover....I have not asked about avastin but I will. I am not sure of the status of it in Canada. Thanks for your help. Heather

I sincerely hope and pray that your mom has great scan results. Heather

I am so sorry for your loss and for the loss of all the members of this site. Frank was an inspiration to all. Heather

I am glad that your husband is home now. Mine just got home on Friday and I would much rather have him home than in hospital. I pray that your husband will get through this set back and come back to you fighting strong. All healing energy and good thoughts coming your way. Heather

I questioned as to why the radiation was palliative. Initially they said they could do none - so I guess this is better than that. From what I understand it is such a large mass and there is so much cancer in the organs that doing a heavy dose radiation will only be more painful and irritating for him. I queried as to whether by some fate that things improved and could this be done again which they said yes. It is hard to accept the palliative word but at this point by seeing how sick he is - it is probably the best.

It has been a rough 2 weeks for my husband and his condition has deteriorated somewhat. He is done palliative radiation on Monday and returns to Sunnybrook for appointment with the oncologists to figure if he is well enough for a clinical trial. If he is not well enough he can choose from two other chemo's. Can I get some imput from experience or choice of what has worked for some the best- I have been reading all the profiles but it seems to vary. -The trial is an IMCLONE trial which randomly assigns a chemo to each client. So he could either get taxotere, alimta, taxotere and erbitux or alimta and erbitux. - Taxotere alone 1x every three weeks - Tarceva If he gets the trial he has to travel to 3 hr round trip 1x / week. The Gemzar/ carboplatin regimin worked for him initially but then failed in the long run. He only took 4 treatments of the 6. So this is not an option. Any thoughts? Doctors are now classifying him as very late stage IV and have really dropped all sense of battle. Heather

Has anyone had any experience with this.... My husband was recently hospitalized due to what they thought was collapsed lung - which was the same - jan 8 when he could breath - to now - so now they don't know what for sure went on. Still looking. So to make a long story short - he is on oxygen and still in hospital. My sister in law and I think that he may need a bit of oxygen but he had such a scare when the sudden shortness of breath happened that he is now panicking whenever the air leaves his nostrils. It is on a low setting....but he doesn't want to even leave the hospital. He gets rides to the radiation treatment in an ambulance and on a stretcher - he is capable of walking. In other words he is scared - you can see it in his eyes. He never had a breathing issue before this. Now to make matters worse he see's an oncologist tomorrow about second line chemo but I have been told that when they see a patient in this relapsed - apparent digressive state - that they are hesitate to be agressive. Has anyone been through this or experienced it. Any hints? How do I get this out of his head - Heather