richnkim
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Rich received his test results today for the month,his tumor marker was 184 is now 84,CT Scan showed to be stable,so he has had 20% shrinkage all together since starting in June. They gave him a 2 week break from the trial because of his joint and muscle pain,also for the shape that his hands are in. When he goes back in 2 weeks they will be lowering the dose too. Not the best news but atleast there was no growth.I’m thinking this maybe the start of him being taken off the trial.
Hope everyone has a Happy Thanksgiving,we are Thankful for alot in our household this year.
Kim
Joy
I know just what your talking about you don’t want to have to talk about money at a time like this but the reality of it is bills have to be paid, groceries have to bought and if your house is like ours we have a 11 year old son who is eating us out of house and home!
We went to the ADRC-Aging and Disability Resource Center-I’m assuming every state and county has one of these. They can tell about Energy Assist. which could help pay for your fuel and electric bills, also they had info about food to. One of the websites they had was http://www.safelinkwireless.com and thru here you might beable to get free cell phone service. Most of the sites they gave was based on your income. The one she did give us was called Cancer Coalition-don’t know if each state has this org.-thru them they give cancer patients $1000.00 a year in gift cards to pay for travel expenses and or food. This one was not based on income just on having cancer.
Hope maybe this will help, the stress of worrying about money eats away at us just like the cancer does to our loved ones.
Kim
Kathy,
As for the phosphorous you can watch your diet and you can also eat some tums after eating a high phos meal that did help for a while but they finally just put Rich on a phos binding drug Renvela.
As for the lips you could try a urea cream which is what they say to use on any of the skin issue that will pop up usually on the hands and feet. Eucerin has been the brand they have been recommending and they do make something for the lips. Good luck.Kim
Rich went to UW Madison yesterday for his second CT Scan since being on this trial and it came back as “stable” no shrinkage. I have to admit a little disappointing I know with this cancer stable is good just didn’t think we would be seeing stable results so soon into this trial,he has only had 10% shrinkage overall. His last CA19-9 was 97 and it is now 187 so that has us worried to.
This last cycle of the drug has been hard on him with more side effects than before. Has now started with hand and foot syndrome just in his hands,they almost look like they have been burnt with the skin peeling off of them they are so raw and sore. He has been using our son’s eczema cream and that has helped alot. He’s also experiencing alot of bone or maybe joint pain making it hard to walk and hold or open things with his hands,the Dr did give him Celebrex for the joint pain,hopefully it will help.
Praying this next cycle is easier on him with better results.
Have a good weekend everyone.
Kim
When Rich was on his chemo of Gem/Cis his legs and ankles would swell up and his Dr put him on a diuretic and had him wear compression socks. He did say the socks took away the pain of his feet and legs being swollen. Maybe those would help her to.
Hopeseeker,
If looking for a mik substitute you could try almond milk. Rich went to our Chiro who does nutrition and supplements and made a smoothie recipe for him and it uses almond milk in it and he like its. He also uses it just on cereal because it is low in phosphates which he has to watch on the clinical trial that he is on.
As for gas pains have you tried something like Gas-X or Bean-o, I know for Rich those have worked too.
So far with Rich we haven’t had a weight loss problem the smoothie he drinks does have protein powder in it and the supplements he takes have been working. I know when my mom had cancer it was a fight to keep the weight on her too.I wish you the best.
Kim
Molly,
I know first hand what it is like dealing with a Onc dr like that, we call Rich’s dr doom and gloom and we are stuck with him because that is what is available to us in our rural area, but he is on a clinical trial at UW Madison and he is wonderful and we couldn’t ask for anyone better but we still need Dr doom and gloom because he is close to home for us.
As for the molecular testing I would do it now,if the clinical trials would let you do them first (most I’ve seen said you had to fail a treatment first)we would of did a trial first and skipped chemo. For Rich chemo really didn’t do a whole lot but tear his body down to where he had to build it back up before he could get on the trial (platelet count). The trial he’s on now so far is shrinking the tumor without the side effects like chemo had. So I think if you can’t surgery it’s to bad you can’t go right into a trial but have to fail another treatment first.
If and when this trial stops working we will try to get another biopsy and have that sent into Foundation One to see if things have changed. I wish you the best.
Kim
Rich started this trial June 29th and right away his stomach issues were resolved,he did have some vision problems the first cycle (fuzziness) but after the second cycle that has gone now too. He has a little bit of fatigue like he did with the chemo of Gem/Cis. To start his CA19-9 was 282 and now is 97 and today he had his first CT Scan since starting the trial had he has had a 10% shrinkage in the liver and the lung nodules! So he is off to a great start and we pray for many more cycles.
Kim
Kasia,
Foundation One did my husband’s testing and my insurance only paid a small part of the claim and they did not ask for the balance. If you go to their site it even says that on there and you can call and ask for yourself, I did that because I couldn’t believe what I was reading but it’s true, they cover the costs. It’s diffinitely a test that you want done to see what clinical trials he would qualify for. Good luck.
Kim
Mary and Melinda thanks for the info-it’s hard to accept when treatments are only working on one area and not all of them.
Right now he is in a clinical trial at UW Madison trial INCB054828 he started it June 29th with a tumor marker of 282 and today’s tumor marker test came back at 97 so it seems to be working, he will be getting a scan Aug 9th so we will see what that shows.
I’m a little confused on the blood sample testing can it tell if you have different types of cancer? The reason I ask this is Rich was doing well on Gem/Cis was getting shrinkage per scans but the nodules in his lungs kept growing. They could not do a biopsy on them because they are to small. So it makes me think that maybe what is in his lungs is not mets from the CC but another kind of cancer.
Also is Guardant Health like Foundation One where if your insur company doesn’t pay the full bill they don’t charge you the rest?
Thanks Kim
Gail,
I know the feeling of trying to get in as many memories as you can. My husband was diagnosed Stage 4 CC with mets to the lungs in Jan 2017 and we have a 11 year old son.
Maybe a good idea could be to get one of those voice recordable story books that he could record his voice reading the story or maybe their favorite book he could record his voice on tape and then they could always listen to it. We have the Night Before Christmas from Hallmark as a recordable book we listen to each season.
My son e-mails me questions he has about his dad,it’s easier that way for him. I don’t know the ages of your children if this would work but it does keep the lines of communcation open.
I do take alot more pictures and videos than I used.
I think the best memory making are just the day to day family life.
I hope things get better and take care.
Kim
Catherine,
Thank you for the link, it answered alot of my questions.
Dr Fung said he is taking Rich’s med records and scans to the multidisciplinary liver tumor group and is asking Drs Baker and Dr Pillai to join in at the conference to look at them to. Then in 1 month when Rich has another CT scan they will look at that one and decide if we should come to Chicago for a visit to talk to everyone.
We don’t have a radiologist here that does this type of thing so we will have to wait intill we go there. I think it’s very nice of Dr. Fung to be doing all of this for us considering he has never met us and this all started by me e-mailing him and asking him to look at Rich’s scans and then just talking to him on the phone recently. He seems like a nice and caring Dr. It makes us have some hope.
Catherine,
Thank you for replying. Other than the fatigued did your mom have any pain while she had the Y90 or right after? The reason I ask that is Rich’s onc said Y90 is painful and can cause alot of side effects.
We spoke with Dr Fung and we are finishing the this round of chemo-if Rich can he didn’t have chemo this week he had to have another blood transfusion-than we have another CT scan than see about going to Chicago to see him and discuss options, so we are looking at about 1 month out maybe doing a road trip. On the plus side Rich’s C19-9 tumor marker test went from 635 to 243, I think that’s good.
Rich had to go in last Thur for a blood transfusion his platelets were 16, since then still not feeling well,thinking about stopping chemo as it is really making him sick.
Did hear back from Dr.Fung he said after looking at the scans maybe Y90 or Cyberknife.He did say the lesions in his lungs did look like cancer but were very small and chemo should take care of those and they shouldn’t bother him. He wants me to call him back.
Any thoughts on these? I’m not sure which way to go, continue with chemo intill it stops working and try a clinical trial,stop chemo right now and try something else. All I know is Rich says the way he feels right now isn’t living.
