My husband’s treatment was discontinued today.
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Melanie I’m so glad you had such a smooth transition with Hospice. I know the Oxygen made Teddy calmer and helped his pain a tad. Good luck for some smoothness to continue and in making this your “precious time”.
That was basically the same for my husband. He did 4 rounds of Gemzar/Cisplatin totaling 8 treatments, over a period of 3 months. They did 2 CT scans during that time, and both times, the largest tumor grew a centimeter, while all the smaller ones were pretty much status quo.
Since he feels so bad, and chemo only made him feel worse, the doctor thought discontinuing it would be the best thing. I asked if there was any other treatment he believed might work, and he very frankly told me no.
Hopsice came Friday and they were really wonderful. They got an oxygen tank and wheelchair out to our house the same day. My husband has pericardial effusion – probably due to the largest tumor (11 cm) and he’s having a lot of chest pain and shortness of breath, so those things were a godsend and something never suggested by the doctor. So I can see hospice is going to be a great resource to have.
Hi all,
I’m enclosing the link to hospice and palliative care of greensboro. This is the place that we used when my Mom was ill. I’m enclosing the link because it has excellent information for hospice in general.
The hospice in Greensboro stressed the palliative care especially. They were able to provide everything with just a phone call. They arranged for oxygen, a shower chair and eventually a hospital bed. Mom was assigned a nurse to come several times a week or whenever we needed her, a social worker who would visit and always bring her flowers, a home health aid to help her bath and wash and style her hair, and they provided my Dad with trained volunteers that would come and visit with Mom for a couple of hours allowing Daddy time to run to the grocery store or drug store or just have some time to himself.
Check out the site….Hospice in my opionion is about people LIVING with cancer…..
Hugs to all who are on this part of the journey….my prayers go out to you!
Pam
Hi Full of Hope –
My husband also was on Gemzar/cisplatin and had 3 rounds of chemo, which was 6 treatments for him – chemo on day1 and day 8, skip day 15, back to day 1 and day 8. After this first “round” of chemo, his tumors were not shrinking so treatment was discontinued. At his stage they didn’t think chemo would help, but for our children and grandchildren he had to try.
Some people do very well on the chemo and have had their tumors shrink and that is what we hope for you.
Come here and allow us to walk with you in whatever ways you are comfortable. We welcome you to our family and will do whatever we can to provide support, answers, encouragement, a “virtual” shoulder.
Blessings as you search for more answers. Please, if you haven’t already, get second or third opinions and see someone who is very familiar with CC so that you get the best possible options and treatment.
Blessings, again,
Susan
Full of Hope –
I just went through 3 rounds of an 8 course treatment with gem/cis, had a MRI and discovered it wasn’t working so chemo was discontinued. The tumors has grown and a bunch of new ones were discovered. In Feb 2009 I had surgery where they took a good part of my liver so additional surgery is not an option.
My Onc said there was nothing else she could do for me and referred me to Fox Chase Cancer Center. I have an appointment with them this coming Thursday.
Gem/cis seems to be the basic route everyone takes.
Hi! I’ve never posted and still not quite ready to share my story…BUT I will say I have found comfort and heartache here. So many on this site have touched my heart and have helped me through many sleepless nights. My question for Melanie (or anyone who can answer) is…How many rounds of chemo did you go through before MD disconitinued tx? How many different chemo combinations did you try before they decided nothing would help?
Any answer is appreciated…
Thank youThanks everyone for your thoughtful replies. The cancer treatment center was on top of everything and put in the referral yesterday. Hospice contacted us within hours and is coming out tomorrow morning. I am hoping with their expertise, and no chemotherapy, he will have that much-needed period of time where he feels better. He’s been pretty much bed-ridden since all of this started in November.
Blessings to all,
MelanieDear Melanie – At home hospice care was a godsend for us. They were completely on top of pain and nausea management. My heart goes out to you as you consider this next step. Blessings to you and your family. Susan
Melanie – I agree with everything said above by Lainy and others. We had Hospice for John….the degree of how much you need them is also up to you. At one point, they were here 24 hours/day and I found that disconcerting….so I asked them to cut back. They readily did whatever I asked. I mentioned this one other time on another thread, but Fentanyl did not work well for John and I was told that it needed to be absorbed through body fat. Since he virtually had no body fat, it didn’t control his pain. Just thought I would mentioned that in case the same happens to your husband. You will feel better once you meet with someone from Hospice. They are very sweet and accomodating. I was also told that if John needed anything more than their care, he could immediately be taken off Hospice and treated at the hospital. That was comforting to know. I wish you both a peaceful and pain-free Hospice experience. Hugs – Nancy
Melanie, Hopefully I can help you through here a little. You and your husband will know when it is time to call Hospice. You tell your ONC and he gives the order for them to come. They come rather quickly, evaluate the patient and they are johnny on the spot for anything you need. We never had to wait for drugs, wheelchair, walker or anything. They came twice a week from the beginning and we had them from August 18 to Dec 3rd. The bottom line is COMFORT! You can ask them anything and they will guide you all the way. Teddy had Morphine 12 hour release twice a day with hourly morphine for breakthrough oh about the last month. We still lived our lives in the beginning going out to eat and etc but it was nice to have them here as it gave us both more confidence. Our Hospices Nurses were not familiary with CC but that’s OK we can educate them! Teddy was taking the Morphine and stool softeners. If you have any questions at all please feel free to e mail me or post back. You are not alone as this whole family will be right by your side.
Melanie,
I am not at that point yet so I dont have any advice from experience. As I have been thinking about what my wishes are I would say that comfort is the biggest concern. So pain relief would be one of the things I would discuss. The only other thing I can offer is prayer for you and your husband. I am so sorry that you both are having to go through this… I am sorry that we all are having to deal with CC. Wish they’d find more options for us or a cure. God Bless,
JamieDear Melanie, I am so sorry your husband’s treatment has been disconnected. When my dad’s treatment was disconnected, his oncologist said he would probably get better for a while and he did. For a few months he had more energy and was able to get out and do things. I hope that will happen with your husband. My dad was under Hospice care, but they only came to check his vitals and see if we needed any medication ordered. Hospice wanted him to have as much time as he could without my dad feeling like he was sick, so to speak. He had a Fentanyl patch and morphine pills for breakthrough pain. That was all he needed until he passed away. As time went on, Hospice continued to see him once or twice a week. Our Hospice nurse was not familiar with cc, but her dad died of liver cancer, so she really told us what to look for in taking care of him. The biggest concern when my dad became weak was his risk of falling. My dad did have blockage and in the end we did not go for an external drain for comfort sake. I hope this information helps and your journey is a peaceful one were you can have some memories to hold onto. Best wishes to you, Pam
Hi Nancy, yes I think not having a blockage eliminates many potential complications with the stent placement, not to mention the additional symptoms that come with it, so in that regard we have much to be thankful for.
We just upp’ed his Fentanyl patch from 50 mcg to 75, which we’ll start this evening. 50 seemed to work pretty well the 1st day but was wearing off within 48 hours, so hopefully 75 will be the magic number. For nausea, Promethazine Hydrochloride did wonders. But he’s reluctant to take it because it knocks him out cold.
I’ll be praying for you and your husband too. Hate to hear that you’re going through the same thing.
Oh Melanie, my heart breaks with you. I am a step behind you but I am afraid we will be there soon. We haven’t called in hospice yet so I will be listening to your replies as well. My husband does not have any blockage as well. I think we are both fortunate in that regard. Has he tried different pain killers? Doug tried 3 until he was happy with hydromorphone. What has he tried for the nausea? Hoping you manage to get him pain free ASAP. Hugs.
NancyHis CT scan showed the hepatic tumors are not responding, and the largest one has grown. Chemo is robbing him of his quality of life, and since it’s not working anyway, his doctor suggested we stop treatment. So we’ll be starting the process of hospice soon. *heartbroken*
Can anyone tell me if there are specific questions I should ask? What to expect? Fortunately, he does not have any blockage issues, but there is still pain and nausea to contend with. I’m hoping we’ll have someone who has experience specifically with CC.
Thanks,
Melanie
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