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Falling out of control


Bonnie

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I've been a member of this board since November 2002. That's when my husband Howard was first diagnosed with lung cancer. The journey has been filled with bumps along the way but they were all doable...until now. Howard has declined rapidally since Christmas and we didn't know why. His MRI's and CT's all came back fine until the last one. That showed three tiny little 'creatures' in his right lung(his original cancer was in the left lung). The doctor felt very hopeful about this since Howard did so well on chemo the first time. He started him on Alimta and Carbo. I don't think that did anything except awaken a sleeping giant. They did a PET scan on Wednesday and it showed liver involvement as well as bone involvement in his spine. I have to ask how accurate are the PET scans since just 3 weeks before his other tests came back fine. I'm totally out of control and don't want to see Howard lose his battle, our battle that we have fought for so long.

The doctor said he is hesitate to go on with treatment since Howard is in a weakened condition compared to what he was prior to this new 'bump'. When I asked him if he was saying we are out of options he said no there are lots of chemo drugs out there and apparently Alimta was not the one for Howard. He was not this weak prior to starting Alimta. He said he was going to get the research person started to try and find any clinical trials or what would be the best recommendation chemo wise. He cannot have any more radiation since he had the max amount with the first tumor and it is that tumor that has awakened.

Even with my daughter being a pulmonary nurse I am not able to carry on a normal daily routine without thinking of what Howard might be facing. He does not want to give up, in fact he said he was not going to just do nothing, he wants more chemo.

I'm scared. I remember the gut-wrenching pain when my first husband was killed in an auto accident. Howard has pulled our family together and my son, even with children of his own, has grown very close to Howard. They are like father and son in many ways! He is not taking his very well at all. How can I help them when I can't even keep my heart from breaking when I think of my sweet Howard having to endure this again or worse yet, not being here with us.

Bonnie

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Hi, Bonnie. I don't think we've crossed paths before, since all but a couple of your previous posts were before I joined LCSC, which was in September 2006. Do you know the cell type of Howard's new cancer? Alimta is usually quite effective against adenocarcinoma, but recent trials have shown it to be almost useless with squamous cell.

There's a new website that you might not be aware of, cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. He or one of the other oncologists on the GRACE faculty can give you the pros and cons of PET scans and answer your other medical questions.

I'm really sorry to hear about this latest turn of events and wish you and Howard the best. Aloha,

Ned

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Bonnie - I am so sorry to hear of your husband's recurrence. I also had a recurrence about 18 months ago, and am currently doing well. There are many new drugs out now, and hopefully they will hit on something that will work on your husband's cancer. It sounds as though his attitude is good an that is so important. You might also want to consider a second opinion at some point - sometimes two heads are better than one.

I will keep you both in my thoughts.

Diane

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Howard's has the same type of cancer he had the first time, adeno. He is now starting to have pain in his spine and stomach area. I have taken a leave from work for three months to be with him. However, the doctors are talking more like a month to two months at most. I still can't believe how fast this is all happening after 7+ years of remission. Worse yet, why didn't the MRI or CT pick this up? I'm not a great fan of the PET scan since we have had false positives early in our journey of lung cancer, but now I'm even more confused.

Howard does not want to go to the hospital so I will have everything brought here that possibly can be. The only thing that I can't have delivered is a cure for this beast. My sister was diagnosed last month with the same type of lung cancer as Howard. It never seems to end.

Bonnie

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Bonnie,

I am so saddened to hear you are dealing with this on two fronts. I can only hope that the days go easily and that you find some time to take of yourself as well.

Is Tarceva a possible option - so easy to take and can do a lot in a short time. Even if he does not have the mutation, it might bring some relief? Just a thought. It wasn't something you would have been exposed to 7 or 8 years ago.

Take care.

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Is Tarceva a possible option - so easy to take and can do a lot in a short time. Even if he does not have the mutation, it might bring some relief? Just a thought. It wasn't something you would have been exposed to 7 or 8 years ago.

Yes, and Tarceva has a lighter side effect profile, especially in terms of blood counts, than the majority of IV chemos, and can sometimes be given to patients who are considered too debilitated to tolerate IV chemo.

Ned

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Bonnie,

I'm so sorry to hear the news of your husband's recurrance and your sister's Dx.

I'd ask about Tarceva. My mom was doing poorly last fall after flunking her third course of chemo and her Dr. put her on Tarceva. The difference is startling. Mom is back to her old self and is very active. It is worth asking about.

Are you bringing in hospice to help? I understand they can offer a great deal of support and assistance.

Susan

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Bonnie, I read your first post awhile ago and don't know why I didn't respond. I thought I did.

I am so sorry to hear in your update that things have gotten worse. I can't believe you have to deal with your husband's decline and your sister's dx on top of it. Hope the advice to try Tarceva was something his oncs might consider. I remember Susan's mom's decline before Tarceva being very scary. And like ts said, I hope you have time to take care of yourself as well.

Judy

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Thank you for all of your kind words, however Howard was admitted to Hospice yesterday and is now on a morphine pump to help eliminate his pain. Things have happened so fast in a just a matter of a few days and the cold hard truth is that I'm going to have to say good-bye soon to a wonderful man.

After the death of my first husband he came into my life and my children's and brought us together as a family once again. My son is taking this extremly hard doesn't want to leave him alone in the hospital. To see my grown son cry is heartbreaking.

Bonnie

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Bonnie I am so sorry to see this today. I understand how difficult it is to deal with right now, and want to extend my thoughts and prayers to you and your family. It is such a rotten disease and it treats everyone so differently.

I wish I had the words and the cure but I can always say a prayer for Howard and you and the Family.

Please spend the best time you can with him and make sure he is comfortable because I know how much he is loved just from reading your posts!

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