Devastating news

[emilyalex]

So, my husband just finished High Dose Chemo at IU. CT scans looked promising before we left, HCG had normalized and AFP seemed to be going down. We noticed before leaving that he seemed a bit unsteady on his feet, but assumed it was from all the chemo, nausea medication, not eating for a while, etc. We blamed it on all kinds of things. His lack of coordination got worse and he still couldn't eat, so Sunday we went to the hospital because he was terribly dehydrated and couldn't even keep water down. Geez, I don't even know if I can write what happened next.

Oncologist was worried about balance and motor skill problems, so a brain MRI was ordered Monday. Yesterday, we got the most devastating news possible. Somehow, after all the treatment my husband has been through since October, he has "multiple" lesions in his BRAIN. We learned today that "multiple" means 4 and a few other shadowy spots. Just since Sunday, his speech has become slurred. Now we have an explanation for the balance problems.

The doctors seem baffled and Einhorn was surprised. With decreasing tumor markers, the fact that lesions could show up in the brain is just unbelievable. We begin radiation tomorrow and will continue the fight, but I believe our fate has been determined. His AFP had gone down a bit as of last Wednesday, but by Monday it had gone from 46 to 52. I wanted to think that maybe the AFP didn't normalize because of the active cancer in his head, but I think I'm just grasping here.

I don't know why I'm writing this, really. I know that no one can change this and that I have to accept what is going to happen, but I am just not ready. This is not how things were supposed to be. We rolled with all of the punches. BEP didn't work. Ok, so we have to do HDC. We uprooted our lives and moved to Indiana for 7 weeks. We stayed strong and positive and we battled. To come home and find this out......I don't even know if devastating is a strong enough word. When even the doctors are surprised/confused, you can imagine how I feel. I'm not prepared to be without my husband. I'm just not.

Thank you for allowing me to vent my frustration a little here. I hope I don't sound as if I'm whining or wallowing in self-pity, I just needed to get this out.

Emily

[Domaque]

Emily, thanks for supporting your husband. That kind of love and support can get people through a lot. My father had a brain tumor in 1980. At first, the doctors said that he probably wouldn't make it through the surgery, then, after he got out of surgery, that he wouldn't live 6 months. After he got done with the chemo and radiation, they said he had five years left. That was 1980 and he is still alive today. I am not trying to give false hope, but i wouldn't count your husband out just yet.

You sound very strong and will be OK whatever the outcome. Good luck, and I will say a prayer for you both.

Domaque.

[dadmo]

Emily:
I really have no words that could possibly comfort you, just know you are in my thoughts. Keep fighting the good fight.

[Scott]

Emily, I'm so sorry. Of course you need to vent -- please feel free. Let's keep up hope in the radiation treatment.

[Karen]

Emily,
I am so sorry. You have been, and continue to be, a strong advocate for your husband. You need to vent your feelings. You and Alex are in my thoughts and prayers.
Karen

[Already Bald]

Emily,
I have faith that things will work out. I am so sorry to hear about your struggle. Please keep us posted.

LiveSTRONG

[Lori]

Emily, I'm sorry you and your husband have to continue fighting this battle, but it sounds like you still have it in you to fight a good one. Please always keep hope alive - radiation can work!

My thoughts are with you and please keep us posted.

[Russell's Mom]

with you

I'm glad that you shared. The days cannot be more difficult. Lean on the support systems that are in the hospital. Stay conscious of what is most important to you and your husband. Discard the unnessary extras and create un-interupted time for gathering your thoughts and feelings. My hopes and prayers are for guidance without confusion and clear thinking for you and your husband/family. Take care, Russell's Mom, Sharon

[petep]

emily,

I am sorry to learn about your news. You and your husband are in our thoughts & prayers. Take each day as it comes, and focus on the treatments for now. You are doing all you can do.

pete

[Hopeful]

Emily

What's going on with the radiation? How's everything going?

We're here to help you and provide information, support and everything else for both you and Alex.

Hang in there. There's a few of us out here who understand what you're going through and can help with anything you need.
Patti

[Karen]

Emily,
You and Alex are in my thoughts daily. I'm hoping the RT is helping Alex and you are holding up OK.
Karen

[CharliesAngel]

devastating news

Emily, I read your message and immediately decided I must register so I can tell you my husband's story. First of all, I am an Oncology nurse and I have been in practice for 24 years. My husband was first diagnosed with TC in 1983 and after all the surgeries and chemo, he went into remission. Everything was well until October last year (around the same time your husband was diagnosed) when we learned that his cancer has recurred after 22 years of being disease free! To make a long story short, he had HDC with 4 cycles of TIP and we were all hopeful that he will once again win over this awful disease. My husband had very high tumor markers and extensive lung mets but this did not discourage me because I had faith in God and in his wonderful doctors ( Dr. Robert Fein in New Brunswick & Dr. Bajorin @ MSKCC in NY). Well, by the end of the last cycle, his tumor markers that had fallen dramatically during treatment, had started an upward swing again. I couldn't figure out what happened. How could the chemo be working so well and then suddenly not work anymore? The doctors thought about a stem cell transplant but decided against it in the end for various reasons. We were left with no other option but to consider enrolling in a Phase 2 Clinical Trial. Then, it was discovered in a routine MRI that he had a tiny 6 mm lesion in the brain. 15 days of RT later, a repeat MRI showed the lesion is gone and guess what -- his HCG, AFP and LDH are all normal! I guess my point is, you are not "just grasping". There's a very big chance that it IS the brain tumors that caused your husband's markers to rise. You see, chemotherapy usually does not cross the blood-brain barrier so these brain tumors are happily growing while the cancer cells in the rest of your husband's body are getting killed off. The good news is, radiation is a very effective tool and with God's help, your husband can still come out of this a winner. Be strong, Emily and talk to God. I don't know what your religion is or even if you have any, but I am a strong believer in the power of prayer and I know He is always there to help us if we turn to Him. Always think positive and you'll see how much better you'll feel and your husband will feel that positive energy, too.

[Scott]

I just wanted to say welcome, CharliesAngel, and thank you for sharing your story. What a shock it must have been to have a recurrence after so many years! It clearly demonstrates the importance of lifelong follow-up. Best wishes to you and your husband.

[emilyalex]

Thank you all so much for your replies, your concern and support. This has been such a tough week and I know I couldn't have gotten through it without your support. You can explain all of this family, friends and co-workers, but no one can really understand what it is like unless they have been there.

Wheeler, my husband, was released from the hospital late Friday evening and has had two radiation treatments so far. I'm still very worried, as occasionally it seems as if he has brain damage. The doctor told us she was "optimistic" and that supposedly his lack of coordination and slurred speech would get better with radiation. Hopefully I'm not imagining this, but he does seem better today. He requires a lot of supervision, with his balance being so off, so I have to help him do everything. Poor man hasn't gone to the bathroom or showered alone in weeks.

We are going to have blood taken for markers tomorrow, but the doctor's office sends labs out to Quest, so it will probably be Wednesday before I get them back. I'm almost afraid to get them now. As of last week his HCG was still normal, but since we keep getting bad news, I'm afraid now that one will go up, too. I am really, really trying to stay strong. Some days it is easier than others. His family can't help much in taking care of him and I don't have family in town, so I have a lot of responsibility. But I will do absolutely anything to help him and I am determined. It's amazing what you can make yourself do when you love someone as much as I love him.

CharliesAngel, thanks for registering and sharing your story. It is a tremendous help to know that this can be overcome. And Scott, Patti, Pete, Sharon, Lori, Dadmo, Domaque, AlreadyBald, Karen - thank you all for responding. We both appreciate your support.

Emily

[Karen]

Emily,
I am glad you're home with Wheeler (I just assumed "Alex" from your screen name...sorry!!!). The post from CharliesAngel sounds very encouraging and I so glad she reached out to you! The power of love is amazing, and you are doing a fantastic job of caring for your husband. Stay strong and keep us posted!
Karen