momof3
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Hi Marion,
They were only able to give him 1/2 dose of lovenox today…without a blood thinner they don’t want him out of bed since there is a significant risk of a clot going to his lung. The right leg was clotted in all the major veins from the thigh down.
A transfusion is a possibility but they are still in a debate over whether the decrease is related to chemo or the heparin. Hopefully they will come up in their own in the next 24 hours.
I will meet with his oncologist tomorrow morning so we can discuss the options…my husband brought up the idea of hospice today as he’s not sure what value the chemo can bring if he keeps having these other issues that get in the way.
We’re both so discouraged since thechemo was making progress but we can’t steer clear of the roadblocks.
Best,
GaikHi Victoria,
Thanks for your message. Unfortunately we are now in the hospital with DVT in both legs. They had started him on heparin but his platelets are down to 42k so they stopped it and are waiting for a plan from oncology. I’m definitely worried that this is the start of a big downhill slope.
GailIt’s hard to believe its been a month since my last post. We ended up with a stent replacement two weeks ago – he spiked a fever of 102.5 but luckily it went back to normal once the new metal stent was installed and the duct was flushed.
We were able to resume chemo this morning and so far the results have been pretty good – the two mets that were found in his brain 6 weeks ago have been resolved (confirmed by MRI). The repeat PET scan showed reduction in either size or activity of almost all of the areas to which the cancer has spread, except for the bones.
The biggest worry is that with the degree of spread that has already taken place, that the chemo will not be able to make enough headway against the main tumors to give us a fighting chance. I’m really trying to settle into a day to day existence but with twins starting middle school in the fall and a 7 year old, it’s hard to not think toward the future.
We’re headed to Penn to see Dr Damjanov on May 4 to find out about clinical trial options based on the Foundation One testing.
Thanks as always for your thoughts and support.
I’m glad to see that this topic hasn’t seen much activity. My husband had 3 mets in the brain, both under 1 cm so they were only found because of a brain MRI after a memory lapse issue.
We got the good news tonight that after the 3 rounds of GEM/CIS he’s had so far, the mets can no longer be found on the MRI…looks like the chemo took care of them first!
Welcome to the family we wished none of us had to belong to! My husband also seems to have his highest energy levels and lowest nausea on chemo days. I do think it’s due to all of the additional fluids and IV anti nausea meds they deliver alongside the chemo. His first repeat PET scan post 3 rounds of GEM/CIS showed decreased activity or size in almost all areas in which the cancer is present, with the exception of the bone mets. Hoping the next 3 rounds go as well and that your wife also sees reductions with the treatment!
I lucked into finding out about camp Kesem a few months ago and all 3 of my kids are so excited about a week of sleep away camp this summer!!
Thanks Marion, luckily it was nothing more than too much constipation. They kept him overnight in the hospital and we got to meet with his GI doctor today…good news is that the plastic stent is still working but it will likely need replacement with a metal one in the next few months. Has anyone been through this recently or have any advice? He’s pretty nervous about the prospect.
Thanks
GailAfter having a pretty spectacular week in terms of his energy and pain following this week’s chemo, we are now in the ER getting checked for a potential bowel obstruction. He’s had other unrelated digestive issues from time to time…just praying this doesn’t turn into something serious!
Thanks everyone,
We agreed with the doctor today to lower the morphine dosage to 15mg rather than 30mg. This is a significant change since as of a few weeks ago he was taking 60mg’s. We are hopeful that this means the cancer is being reduced by the gen/CIA but won’t have the next PET for a few weeks.
He is down another 5 pounds over the last two weeks but this is the smallest weight loss yet and we are hoping it will slow down now that webbave added EnsurePlus with whey protein mixed in twice a day.
Unfortunately the doctor has not yet reviewed the FoundationOne report but will hopefully talk it through during next week’s appointment.
All in all, not a bad start to round 3!
GailThanks Marion, you make excellent points. I did set up a website that helps with organizing both meals and visits…that’s come in very helpful when chemo prevents us from doing pick ups and drop offs at school. But it’s true that I’m probably not putting in for meal assistance as much as I should.
Since my husband had shoulder surgery last year, we have a yard service, and I’m using gift cards from our long distance friends to cover some of the extra expenses.
We start round 3 tomorrow — hopefully he’ll handle it as well as the others so far.
GailThanks everyone for welcoming me into the fold.
So far, I have had help from local friends so that I can take the kids to their swimming lessons, and I’ve been able to get out of the house for a little while at a time to do things like grocery shopping, which seems to be a bit cathartic as strange as that sounds. I’ve got a cleaning service coming every few weeks to help keep the chaos under control.
I do think that as I start doing more work during the day, that meal help would make a lot of sense. It’s just so hard to fathom doing this all on my own…I had respect for single parents before but even more so now.
We did get the results of the FoundationOne testing last week, so I am hoping the doctor will discuss them with us tomorrow so we can get an understanding of other treatment options. I just hate hearing that he is “not curable”…I still want to believe recovery is possible.
GailHi Lainy and thanks for your reply,
We are now with a wonderful ONC at Penn after a terrible hospital experience where I was told it wasn’t worth doing a PET and we would just do chemo until he couldn’t take it any more. We are headed to a nutrionist today as his appetite is very poor and he has already lost quite a bit of weight.
I have a lot of support from both my work colleagues and parents from my children’s school. It’s hard to even know what help to ask for…I could probably do a bit more work but find it so difficult to focus as my mind keeps wandering. I have applied for a few therapy sessions through my benefits that they will do through the computer so I don’t have to worry about leaving him home alone.
His next PET scan is on the 3rd and repeat brain MRI is on the 18th so we are hoping for something to move in a positive direction. So far every test result starts with “I am sorry, but” and we really need some glimmer of hope.
Best
Gail
