Husband lllb squamous lung cancer

sueliz61

I am new to this - just registered tonight and not quite sure why I am writing. My husband had a kidney transplant 20 years ago and has been on immunosuppresant drugs ever since.
He developed Type1 diabetes in Nov 09.
He was diagnosed with non-hodgkins lymphoma Dec 08 and went through R-chop - petscan clear in July 09.
Sept 09 they noticed a growth in lung and checked again in Dec. It had doubled in size. He had an electromagnetic bronchoscopy and the biospsy results said no malignancy in January.

He had enlarged lymph node in clavical and they biospied that the beginning of Feb - squamous cell metatasized from the lung - they figured. Oncologist said they would do radiation and chemotherpy for 7 weeks and then additional chemo after that.

He has since decided that my husband is too weak to do both the radiation (he has not recovered from the R-chop chemo yet) and chemo so right now will do radiation to the 2 sites and then chemo once the radiation is done.

I really don't know what to say except that I was glad to find a place where I can talk and read what other people are going through.
Sue

abfaul6

Husband has NSCLC.
Sue, I, also am new to this. My husband was diagnosed in July 08. The dr removed about 2,000cc fluid from his lung and said he was 4th stage. He has been through various chemo treatments. The 3rd series gave him more problems than help. He ended up with double pneumonia, the doc. was not sure whether it was caused by the chemo, fluid from a tumor or what. They treated him aggresively and it almost killed him, his o2 sats were in the 70's and low 80's. He started with hospice care in the home in December. Hospice is proving to be a good decision. The nurse comes once a week, and the aide 3x week. I have a number to call in an emergency which is comforting to have. I have 4 grown children who are supportive also grandchildren who help out too.
I am finding the further I go down "this road" the harder it gets. I have to focus on being balanced in my life. I have also found the 1/2 xanax is a great aid to sleeping at night.
What are you doing for yourself? You did not mention yourself.
Hang in there Sue, and keep reading and writing. My best wishes to you and your husband.
Ann

sueliz61

abfaul6 said:

Husband has NSCLC.
Sue, I, also am new to this. My husband was diagnosed in July 08. The dr removed about 2,000cc fluid from his lung and said he was 4th stage. He has been through various chemo treatments. The 3rd series gave him more problems than help. He ended up with double pneumonia, the doc. was not sure whether it was caused by the chemo, fluid from a tumor or what. They treated him aggresively and it almost killed him, his o2 sats were in the 70's and low 80's. He started with hospice care in the home in December. Hospice is proving to be a good decision. The nurse comes once a week, and the aide 3x week. I have a number to call in an emergency which is comforting to have. I have 4 grown children who are supportive also grandchildren who help out too.
I am finding the further I go down "this road" the harder it gets. I have to focus on being balanced in my life. I have also found the 1/2 xanax is a great aid to sleeping at night.
What are you doing for yourself? You did not mention yourself.
Hang in there Sue, and keep reading and writing. My best wishes to you and your husband.
Ann

Hanging in there
Ann, I am so sorry about your husband , but glad that you have hospice to help. I know they helped a lot with my mother. My husband just started radiation on Monday - so far so good. They are able to radiate without affecting his esophogous(sp?)which will help with side effects. He had chemo last year for Non-hodgkins lymphoma and it pretty much did him in. His wbc and rbc still have not come up and he is fatigued. He was starting to feel a little better in Novemeber and then down hill in December. He does not take an active part in his care - from making decisions to his medication and that is so unlike him.
The dr this morning said the raidation is just to keep him comfortable and out of danger of lung collapsing and airway cut off. The chemo after (if he is able to do it) will just be a continustion of making him comfortable. (Isn't that a study in opposites?) Anyway, she said there is no cure and I am confused.
We retired from our business when he got sick last year - the kids have taken over and that is a relief, but I feel lost. I babysit our grandson twice a week - he is 4 months old and that is a wonderful distraction. I also find that I am able to keep myself together at home but often start crying in pharmacies and grocery stores - go figure.
You hang in there too Ann. Thank you for the response- I feel alone and your letter helped.
Sur

cobra1122

Sue
Sounds as tho you've both had a rough journey so far, but I just want you to know as many will your not alone nor do you have to go through this without help.
You have gotten on a site that is full of support and information, all you have to do is ask and someone is usually more than willing to answer. Though everyone has different results and experiences on this journey, we can share our experiences on treatments, side effects, clinical trials, and other aspects of dealing with this disease.
I am 49yrs, I was diagnosis with stage 4 lung cancer in '08, NSCLC in my right lung with mets to the lymphs, and SCLC in the lung.If you read my bio you will see that my Health status is quite complicated, but I am still plugging along. Though, I have had some down turns and am now on Hospice (as of Jan/Feb 09) I plan on carrying on as long as possible.
I had chemo when first diagnosis, it was palliative care. My lungs were to involved for surgery and the cancer to advanced for any other treatment. But it did help buy me more time to spend with my wonderful wife, 3 kids, and 5 grandchildren. But I suffer from multiple health problems and am thankful for each day.
It sounds as though your husbands Onco Doc is doing everything that he can without further risk to your husbands current status, and if you feel that more could be done dont be afraid to ask, or even seek a second opinion.
I just want to wish you both strength and positive attitudes, even at the lowest times, positive attitudes help, my wife and I believe that is what keeps me going. We use Humor and a positive attitude no matter what, it helps us remain sane ( if you can call it that).

Our Prayers and Best Wishes to Your Husband, You,Your Family,and Everyone....,
Dan(cobra1122) and Margi Harmon

galfit

Stage 3B Non-small cell cancer and Care Taking
Hi,
My name is Barb and I don't have cancer but my partner does. I am up tonight because tomorrow she is scheduled for a full body PET Scan and I am unable to find sleep tonight because I am scared for her. She had her right upper lung removed, followed by four rounds of chemo including a clinical trial medication. She has continued with the clinical trial medication(Avastin) every three weeks. Maybe a month ago she had a x-ray of her lung and that was clean, but due to her continuing to lose weight, sleep long periods of time her oncologist was concerned and ordered the PET scan. How are you coping with being the responsible one for the majority of all? I am so glad I found this site, it's a relief to be here and to read other postings. Thank you all.
Bless you all,
Barb

congoody

galfit said:

Stage 3B Non-small cell cancer and Care Taking
Hi,
My name is Barb and I don't have cancer but my partner does. I am up tonight because tomorrow she is scheduled for a full body PET Scan and I am unable to find sleep tonight because I am scared for her. She had her right upper lung removed, followed by four rounds of chemo including a clinical trial medication. She has continued with the clinical trial medication(Avastin) every three weeks. Maybe a month ago she had a x-ray of her lung and that was clean, but due to her continuing to lose weight, sleep long periods of time her oncologist was concerned and ordered the PET scan. How are you coping with being the responsible one for the majority of all? I am so glad I found this site, it's a relief to be here and to read other postings. Thank you all.
Bless you all,
Barb

welcome
hi Barb,
welcome to CSN - I have been reading and occasionally contributing for a few months now (also had right upper lobe removed and am holding my breath until the next PET scan) - my partner left a couple of months after my diagnosis and lobectomy so things have been more than lonely around here without her - just so you are aware (I did not see this until recently) ,if you scroll down the discussion board there are sites for caregivers and for lesbians (am not sure it is needed but some feel more comfortable having their own space to vent) - hope your partners' scan is clear -
kindness and warm welcome - connie.

sueliz61

galfit said:

Stage 3B Non-small cell cancer and Care Taking
Hi,
My name is Barb and I don't have cancer but my partner does. I am up tonight because tomorrow she is scheduled for a full body PET Scan and I am unable to find sleep tonight because I am scared for her. She had her right upper lung removed, followed by four rounds of chemo including a clinical trial medication. She has continued with the clinical trial medication(Avastin) every three weeks. Maybe a month ago she had a x-ray of her lung and that was clean, but due to her continuing to lose weight, sleep long periods of time her oncologist was concerned and ordered the PET scan. How are you coping with being the responsible one for the majority of all? I am so glad I found this site, it's a relief to be here and to read other postings. Thank you all.
Bless you all,
Barb

Barb
I too am so glad that I found this site. It has helped me alot in learning and in seeing that we are not alone. It has also helped lift the black cloud over my head just a little bit.
I have become somewhat crazed with research - wanting to be able to have the information and ask his dr the right questions. (Kurt does not have any desire to read up on the cancers that he has had.) I am not sure that this is the right approach - I think moderation in all things is probably the way to go.
If you are going to be responsible for all your partners care- remember to go easy on yourself. I have found that lists are my best way of coping. I also include fun things or at least ordinary day to day things on my the list so it is not all about illness. I try to get imput from him but if he doesn't respond I go ahead and list things like - walk in the garden - play with the baby.
He is so fatigued it breaks my heart, but I want his mental attitude to be upbeat sometimes.
I hope that the pet scan results are good. Please keep us imformed- we do care.
Sue