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hockeyma

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Posts posted by hockeyma


  1. Hi

    Just wanted to let you know that if my husband gets back on his feet and recovers from this set back he is in right now that he will be starting the same trial drugs by random pick as you are. So any information out there would appreciate it too. Keep in touch Sharon and hope you enjoy your trip to Disney!

    Heather


  2. 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


  3. Mary Colleen and Flower Girlie.

    We have been on a roller coaster ride since Ger's last chemo. It was January 5th. He was good for about a week, then the pain set in, weight went down and he was exhausted. He had an appointment to set up for radiation on the 1st of February - however on January 26 he ended up in hospital. He had huge shortness of breath and was very weak. I called ambulance. Finally the doctor understands the pain level they have been adjusting for 3 weeks unsuccessfully - so if there is a pain issue with your guys - get someone who really knows what they are doing to do things properly - monitor it and guage it til the right levels are reached. As far as the shortness of breath - he had been coughing more prior - so the family doc thought perhaps disease progression. Of course no-one could go to radiology and look at the Jan 8th catscan and do a new one to compare - get on there butts if you think something is up. I should have. They thought collapsed lung caused it but the cancer clinic says no - embolism - not sure as already on thinners. I have written a note to my family doc to get this straightened out. Ger is still in hospital - he is on a small amount of oxygen cause he got the sh-- scared out of him so bad that he is now paranoid. We went to a cancer hospital hour and half from here yesterday for the appointments for radiation and had it all moved up - mind you it is short and palliative - another questionable move which I will deal with tomorrow. So I guess in the long run - he is still in hospital and I hate it and I miss him being home but he is getting the run back and forth for radiation - but he is nervous and insecure now cause of all of this. I have requested a respirologist and think that I will have to probably also get a psychologist. So lesson learned - stay on top of it. Don't assume and push for all the proper tests rather than a guess.

    Heather


  4. Thanks for the help. Whoever figured total collapse of lung wins. We were up much of the night and he got weaker and was in severe pain that the meds couldn't control. We called an ambulance in the morning and they took him in. The mass of cancer that Gerald has rests on the svc vein and up to the shoulder by the base of his neck - thus all of the pain cause when the lung collapsed I imagine it pulled on all of those nerves and the tumour is sitting on something that affects the shoulder and arm (not enough time to look up everything to get to technical). What they are doing now is keeping him in hospital on morphine and then transporting him to Sunnybrook 1.5 hr away on Monday to radiation for marking. I have to clarify what else. Anyways - wish us luck. Just thought I would let you know and will touch base once I have more information.

    Heather


  5. Maybe someone would have some suggestions here. My husband up until now has not had a lot of breathing problems. Shortness of breath is not what brought him in to hospital and ended up in diagnosis. He has had a problem over the last month of getting the phlem up and has been to the doctors numberous times for pain. He has a partially collapsed lung and is still really tired now off chemo for 3 weeks waiting for radiation. Doctor said yesterday that tumours in the lungs could create more shortness of breath - which I guess indicates that his are probably growing? Other than puffers or antibiotics for preventative of pneumonia does anyone have any tips or tricks that do help? Today he had an episode quite similar to an asthma attack. These questions might sound stupid but I just don't know what to think.

    Heather


  6. Bill, that was wonderful. I believe you missed your calling. Your depth and perception is a blessing. I look at my husband in the last few days - seeming so quiet and accepting in his faith and I wonder what rolls through his mind. I believe you have opened the doors for me. Thank you

    Heather


  7. I am really sorry about your experience with the naturopath. I am sure that if the shoe was on the other foot he wouldn't have wanted to be spoken to that way. Some doctors just don't get it. We had one assistant radiologist we spoke to who kept empasizing the "one year" factor. Not what you want to hear. What I say to any of them now is that we know the prognosis but Ger is going to try for a lot more than that so we would like as much team effort as possible. All the best with your hubbies next chemo.

    Heather


  8. Hi

    There are different forms of meningitis...normally in a teenager it is meningicocal and shows up as a severe rash on the legs....if you do a search there are some excellent websites that will show pictures and give the signs to look for. My brother had meningitis and it started as strep b pneumonia. Meningitis usually strikes quickly (like within hours)and patients are severely ill before it is sometimes taken seriously. It is a good thing the doctors are on to it but sounds to me like there is definitely more to it. Hope all works out.


  9. In addition - I would like to thank Dr West and everyone here who has responded and researched to help me and my husband out. I think that this website has ultimately got to be the best source for someone who is touched by lung cancer....whether they be the caregiver - the patient - or those grieving. I lost my brother suddenly to meningitis at the age of 32 in 1998 and when my husband got diagnosed in October this year at the age of 42 I made a vow to myself that I would do whatever I possibly could to prevent him from dying. I searched all kinds of websites and finally with a lead from Ernie on another message board found this site. The information, communication and help are a huge bonus as well as comforting because you don't feel like you are battling this beast and all that goes with it alone. When the other day we found out that Geralds cancer diagnosis was not common and that treatment could vary it really threw me for a loop. I now have masses of information that is not just statistics but from very real people and I appreciate that with all my heart.

    Heather


  10. From my point of view I wanted to let you know that I also find the time lines very helpful. From the start I have copy and pasted onto plain paper any that are similar to my husbands situation - which incidently has changed recently to be a not so common diagnosis - and I have compared those timelines and what seems to work and not work for people in comparison to my husbands degree of cancer and treatment - make sense? So even though they may not be of use to some they definitely are to others. I find it unfortunate actually that when a time line is changed that it changes it back to the members 1st post. There are members who were caregiving family who have passed on and original diagnosis, treatments etc get modified after that. It would be nice if the original timeline at time of post stayed on the old posts and later posts showed the changes. We are here on this message board because we are facing reality and as a caregiver for my husband I am living it 24/7 anyways - so the more information - whether sad or not - I can absorb the better.

    Heather


  11. Hi Mary Colleen.

    My husband was on the same type of chemo - he would have gemzar and carboplatin thursday of week one, and then just the gemzar on thursday of week two, week three he would be off. After 3 of these 3 week cycles - so going into his 7th actual treatment - his hemoglobin count went for a total dive and he had to get transfusions. He was shorter of breath. He would fall asleep standing up and could do nothing without getting exhausted...totally. We would have people over and he would fall asleep talking to them at the table. I couldn't figure out what was going on - his week off he was like this the whole week - and after the blood work for chemo they called and said no chemo - get blood instead. I wish you and your husband well and hopefully he gets better so he can get his final round of treatment.

    Heather


  12. Don

    For the small amount of time I have spent on this website I have found you to be very supportive and informative to all those you have conversed with. I am sorry you have had so many hard times. I pray that you may feel now the same comfort and support that you have given to everyone else.

    Heather


  13. I am very sorry about your mother. Remember she is free of pain now and in a much better place. I know you will be as strong for your family now as you were for your mom in the past monthes.

    Heather


  14. Barbara

    I think that you should go to a cancer treatment centre if you haven't already. We were going to just our oncologist in our local town ... he is good and well respected but my husband has to go to radiation at the cancer centre 2 hrs away anyways. So we have met with a medical oncologist there also. They are more focussed, have more staff, and have more time to deal with Ger's situation and already we are getting more definitive answers. If you at least get what your oncologist is going to do - then go for the second opinion at a centre of what their plan would be - then you would not have any self doubt. Make sure you get a copy of all of your reports, scans - you even should be entitled to your ct scans on disc....I go over and over my husbands reports all the time (though I can't read the ct discs I still have them). You are 1 of 200+ patients of your doctor - you never know if they might miss something or pass it up as nothing to worry about where you might catch it and question it - so having your records is good. Sorry that the cancer has come back. You beat it before you can beat it again.

    Best of luck - Heather


  15. Hi

    Thank you so much for all of the help so far - keep it coming - i am so grateful. This has been a real roller coaster ride so far for sure. I am printing out all I can and want to make sure I have it all together on the 1st of Feb for meeting with radialogist and oncologist at Sunnybrook. I know they are going to set the radiation up then....but he needs a long term plan big time.

    Heather


  16. Well we didn't get the catscan results back yet but we did get the revised pathology report which are done for the third time now- this time by Sunnybrook. They didn't know if there was thyroid involvement and were checking because the characteristics of my husbands cancer were so abnormal. The result is metastic large cell neuroendocrine lung carcinoma. Apparently this isn't common - stats are 5-10 percent of nscl are this -and have poor prognosis from what I have read. Does anyone know anything much about this or know anyone that has it. I have done a few quick searches on this site as to not freak myself out too much as we have to take kids to hockey shortly and I am coming up with more links to small cell. I don't even know if we want the results of the catscans when they come in - seems like the better he feels the worse the reports say he is. So strange. Help would be appreciated. Thanks.

    Heather


  17. Hi Heather

    My husband drinks green tea and he also drinks essiac tea - and these were both ok'd by our chemo department

    Let me know what you are drinking for sleeping - cause he has a hard time with it - he has sleeping pills but they don't seem to last more than four hours.

    Heather

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