michele
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Jenny -am going through the very same thing, my heart is so full of sadness, and am overwhelemd by the details. My wonderful husband left me 3/7/08. And I keep wishing I could just find a stairway to heaven to join him.
Stacie -having lost my soul mate Tom 10 days before you lost your Dad, I understand the pain that you are going through and your’s Mom certainly. I agree with JeffG, I feel my husband in so many ways around me still, and there are signs that he is helping me get through this, you feel his support all through the happy day.
Thank you all for your kind words.
Colleen, hang in there, I know how tough this is to hear. Have been anxious for you and Fred too. Just hug him a lot, and take extra time to be with him. I didn’t want to miss a minute with Tom, so on some level I must have known it was soon.
Am trying to take this an hour at a time. It has been a week, and I am definitely numb, going through some of the motions, and wondering when it will hit me. It helps to have a lot of family and friends support but mostly it seems surreal and I am going to seek bereavement counseling soon. The loss seems too big for me to deal with yet, and it seems easier to postpone the reality.
Am not going to leave the site, I found it my lifeline many many times.thank you everyone who posted. This is the most difficult time in our life as it is in all of us who live with this disease.
Colleen -I will email you privately, you too are often on my mind. This journey keeps producing hope in the toughest of times doesn’t it?
Betty, am not sure how you can keep up with the sadness on this site after your loss.
Re the IVC filter -this was done a year ago, but the filters are lower than the liver, and if the CC produces clots in your liver the filter is useless.
My husband is feeling stronger today, so a little hope returns, but the doc did give us a reality check, the chemo has such little effect on this monster, and takes such a toll.
So now we need to regroup and figure out where to go next…
This site has given me so much during this awfull time. Thank you all for keeping it going.cdr – my hubby went through chemoembollization ( 4X) taking Lovanox blood thinner shots, so you might ask to be put on this as easier to get on and off for procedures. You get used subcutaneous shots in stomach, like insulin. We are also waiting to get Ok for Folfox systemic -which is like yours + Leuvocorin. Hope it works for you too.
Thank you all for your responses.
Colleen, have been wondering about you and Fred…and what kind of systemic will he go on? Has his infection gone away?
Betty I saw Sam’s blog and your pic’s and noticed where you were from- our very good friends the Crockers from your town are some of our biggest support. They remember you well. Your blog breaks my heart.
Jeff -thank you for your always excellent advice, amgoing to push further for radiation as you and Betty have experience…we were turned down for it, as they said it has very poor success rate. We will pursue this avenue as well.Charlene -like Colleen’s husband my husband Tom has had 4 chemoembollizations. At Georgetown they do an MRI 6 weeks after the procedure, and every one has had different results and effects. The good news is that it really can destroy a good protion of the tumor, the bad is that they may need to do it more than once especially if there are several tumors on the liver. As for the advocacy issues -there are advocacy health support groups in every state, but your doctor’s office needs to be on the case as Jeff says. We pushed back very hard, and finally got them to approve chemoembollization which was at first denied to us for 2 mos. Push back and see if there are outside groups that can help. Good luck, the process is harder than the disease sometimes.
My husband Tom has had a number of pulmonary embollisms, and thrombosis in the portal vein in the liver. He has also had an IVC placed ( good for leg clots) but since the clots are being thrown by the CC in the liver tumor, the filter does not help. We have had several emergency hospitalizations as the scans are pretty scary, but after consulting with a major hematology oncologist at Georgetown Hospital we were told that many CC patients get clots. They are not always discovered unless symptoms appear. My husband became breathless walking and rushed to the ER. He is on Lovanox ( 100mg) – two shots a day to keep more clots from forming, But the existing ones take a very long time to get absorbed, it has been 10months since the first one appeared, and it is still there and more…
Ted – your love for your Patty is familiar to a lot of us going through this with a beloved spouse. Please know that you and Patty touched many of us and your loss makes it even more important to make sure we appreciate our own families during this season. Am so sorry for your loss.
you’ll get past this latest hurdle Jeff and continue to help the rest of us on this web site. In the meantime a lot of us will be sending a prayer your way as we all face our own challenges this Thanksgiving.
I was just going to post about my husband’s pulmonary embollisms to see if anyone else had gone through this. My husban’d’s CC was discovered in Feb from a ct scan when he was short of breath. Today 8 months later we are still dealing with them, a couple of emergency hospitalizations as everyone panics when they see the size and number of clots that have been developing despite Lovenox 2 X a day at over max doses. The clots are thrown by the liver which has been embolized 3 times trying to deal with CC. As if it wasn’t enough to deal with the disease, this is another major worry. You may be able to contain the clot action with just Coumadin, if not, you can always go to Lovenox. We are looking into clot busters too. Anyone else out there dealing with this?
This is so helpful and as usual Jeff, your input is so positive. I hope more additions will be added and maybe we should even consider a separate topic with referrals for new folks?
C0olleen, I am going to probably ask for a consult with Dr Choti too. Hope your Fred is doing better? We go in tomorrow to get results of the 3 embollizations and next move, To having consistent back pain so am going to ask for a bone scan as per jeff’s suggestion. Thanks to all.Am so sorry Colleen, I know exactly how you must be feeling. God I hope this passes for you both soon. It sure sounds like the tumor necrosis is causing havoc, and it did for us too. Please let me know your news, I will check this site as soon as we return.
Hi Colleen -I so hope your Fred is doing better -am NOT totally shocked at your news as we too have been surprised at the lack of predicatability for each session. Hopefully by now the pains are under control, and he is gaining strength? Am most interested in what they recommend for him at Hopkins, and whether they are looking at surgery as an option? And the Theraspheres?
Tom has had a couple of hiccups -the pulmonary embollisms which have made him short of breath, and lately some major fluid retention in knee which complicated his life for a week or so. The chemoembollization had a tougher reaction ( pain and nausea) this time as well, and he is still not back to full strength.
The MRI will be end of Oct so we are taking vacation, hopefully no more dramas for 2 weeks before we face the hnext hurdle.
We are following ( and praying) for you both, and hopefully next step will be easier for him…please keep me updated when you can.
