Sensitive Question

[Coragirl25]

Hello, my husband had his first scans since starting Nivo. He had 3 infusions and the tumor in his lung has increased. Not the news we were hoping for. They didn't find anything anywhere else and I am trying to focus on that, but I am scared.His oncologist wants to add radiation to the immunotherapy.He is on his way to Houston now for a consultation with the radiologist. My question is, is this the beginning of the end? Is there any hope that he can beat this and be here to see his daughter graduate from highschool? The Doctors at MD Anderson really don't tell us much. I want him to change because MD Anderson is a horrible place. We always wait hours past his scheduled appointments and we feel like a number in a cancer factory. We were there for 12 hours last week! I am feeling low and very afraid of what the future holds.

[strawberryjam]

Hello Coragirl

I am sure this is frightening time for you and your family . Take a deep breath and don’t give up . I have read that tumors often grow at the beginning of immunotherapy and then shrink laterSending you prayers and hugs . Carol

[Coragirl25 in reply to strawberryjam]

Thank you, I am just a mess today.

[missyrand Ambassador]

Coragirl25,

I hear and respect your anxiety. We all support you in doing what you can to live as effectively as you can while managing your anxiety and living with the unknown.

I also want to support using the energy from the anxiety in a productive way if possible.

I encourage you and your partner to write down all your questions, including asking the specific and difficult ones like:

Given how he has responded so far to the treatment, what are your suggestions and why? What are the statistics for persons like my husband for each of the options you are suggesting? What are the possible/ likely side effects? What if we continue on this path with no changes? What help is expected from the recommendation for radiation and for what likely duration of response?

Consider asking for a palliative care consultation. To be clear, this is NOT hospice. It is a collaboration to make sure that any treatment is consistent with your family goals and values.

Ask about research trials and if he is eligible. Three treatments is not all of the dosing options. When my husband was on Keytruda, there was a period of time where the melanoma progressed before progression halted and then there was improvement.

You might be curious about the addition of Yervoy as a combo treatment and if he is eligible/ a good candidate. Some of the recommendations for treatment may also be based on other general health and the genetics of the original tumor.

This is a difficult rollercoaster.

missy

[Coragirl25 in reply to missyrand]

Thank you missy, I appreciate your advice.

[bearkat]

Hi. I haven’t posted in here since my son passed from melanoma last January. I hesitate to post because I don’t think people want to hear from people who had the outcome they are fearing most. I am taking a chance here because your post touched me especially. I could feel that familiar anxiety in your words. I am sending you my best energy and prayers. I wanted to tell you that my son was also seen at MDAnderson and we did have some of those experiences that made us feel like he was just a number, not a person with feelings. I think that is bound to happen in such a big place. After a while, we just refused to take it. We started telling the doctors and nurses how we were feeling. We contacted our patient advocate (do this if you haven’t already). We were surprised to find how responsive they were. There are some things they couldn’t change but some they could and it made a real difference. Just seeing them try to make it better did make it better. It made it possible for us to stay with the best. Another thing that made life easier was that we started using MDA’s satellite locations for every scan or MRI or blood work or anything else we could. At these locations we were able to park right outside the door and get seen almost immediately every time. This dramatically cut down on wait times, etc and made it much more tolerable for my otherwise impatient son. There is also a brand new location getting ready to open in The Woodlands north of Houston very soon. We just started asking “can this be done at another location “ every appointment. At first the doc seemed hesitant but when we pushed for it she ok’d it and quickly agreed that it was a good thing for my son’s overall experience. Sorry for such a long reply, I just wanted to share what worked for us.

Wishing you and your husband the best. Those tumors often grown before they disappear on immunotherapy so don’t lose hope. Hugs to you.