Plan A for Hatshepsut's Husband: An update
Xeloda 1000 mg. twice a day (one week on and one week off)
Oxyplatinum (via IV) (I'm not sure whether this infusion will be weekly or every other week.)
Vectribix (via IV) (This infusion will be every other week.)
My husband is feeling well. He is eating well and his blood tests were good today. He is a bit weak, though, from his hospitalization. We are handling his fistula with a pouch rather than the KCI Wound Vac that didn't work because of the thickness of the fistula discharge.
I've been told to have him drink a lot of water before tomorrow's treatment, consume no caffeine and eat in the a.m. (I've already filled him up with beet/carrot/apple/ginger juice and blueberry smoothies today---as I do every day.)
I would appreciate any advice you might have and any encouragement you can direct our way. Has anyone been given this chemotherapy drug cocktail? The treatment center told me to expect that we would be there for four and a half hours. I'm already exhausted. Four and a half ours sounds like an eternity.
Hatshepsut
Comments
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Hi Hatsheput,
Thanks so much
Hi Hatsheput,
Thanks so much for this update. I am glad your husband is feeling good + you have a plan in place. I don't have experience with that particular chemo cocktail, but I think the advice to drink a lot + have something to eat before chemo is good. The 4 1/2 visit is long, but often the first one is longer than the rest. Sometmes my chemo days are very long because often they are doing the blood draw, wait for the results to see if the neutrophils are high enough, then if they are a little low, the oncologist has to be called, wait for her to respond, then if she wants me to have it, wait for the chemo to be prepared. Sometimes there is a lot of waiting! Your husband has had his bloodwork done, so that will eliminate some of the waiting. We usually try to have something easy for dinner on chemo days. I want to send good wishes to you + your husband for tomorrow. Please let us know how it goes.0 -
Hi Hatshepsut,it's good to
Hi Hatshepsut,it's good to know that doctor has a plan for your husband.It's also good to know that your husband is feeling well.Today,when my husband was doing chemo in the cancer center,there was a gentleman in the same section as we were.He is 94,I believe his grandson was with him.He had to take a long time chemo infusion,he started almost the same time as my husband did,but until we left,he was still there receiving chemo.He was in good shape and playing chess with his grandson.You and your husband are in my prayers.Take care.0 -
thinking of you and hubby
Hatshepsut (I love saying and writing that name!),
I go in for my chemo infusion tomorrow, as well, so I will be thinking of you and your husband during that time. Oxy and vectibix (which I think is similar to Erbitux) should be a whammy of a treatment. Hopefully enough to really knock his cancer out! You will need to watch for the side effects, though. Not to scare you- but watch your husband carefully during the infusion of the oxyliplatin. Most people do fine, but some people can have an allergic reaction to it- look for red splotches or if your husband starts scratching and complains about being itchy or tingly. I will pray that will not happen! But sometimes if someone is close nearby and it does happen, the person close by would probably notice before the chemo nurses who can't just sit by their patients' sides all day. I'm glad that you have a plan that you're satisfied with.
You and hubby take care!
Lisa0 -
Hatshepsut
I'm glad you have what sounds like a good plan of attack. The smoothies sound good too. All of the advice sounds...sound. I usually don't drink a lot of water before chemo but that's only because I don't care for walking around with the IV bags. My infusions are around 2 hours. Four hours is a long time, if I were your husband I'd probably nap. For you, like others have said bring a book, crossword puzzles, start a FaceBook page(?) Mostly kidding on that one but it's often a great way to make time go by quickly.
Thinking of you both.
-phil
I wonder if there is an area for you to rest in if your husband nods off?0 -
Thank You.
Thank you for your kind posts.
We are home. The chemotherapy treatment went well. My husband says he feels well. It did take four and a half hours!
I am exhausted.
I am still open to any and all suggestions on how to mitigate side effects. Do you have any suggestions on how to deal with dietary issues? We are a spicy food family. The nurse today told us that my husband couldn't tolerate ANY spicy food.
Hatshepsut0 -
Not spicy, not niceyHatshepsut said:Thank You.
Thank you for your kind posts.
We are home. The chemotherapy treatment went well. My husband says he feels well. It did take four and a half hours!
I am exhausted.
I am still open to any and all suggestions on how to mitigate side effects. Do you have any suggestions on how to deal with dietary issues? We are a spicy food family. The nurse today told us that my husband couldn't tolerate ANY spicy food.
Hatshepsut
If the nurse says he can't tolerate ANY spicy food that kind of narrows it down...to nothing spicy. I know there have been plenty if times when all food tasted bland, even the spicy stuff then other times mildly spicy food would make my tongue go crazy.
Glad you both made it through the day, that is a long one.
How often does he have to do this? Every other week?
-p0 -
foodHatshepsut said:Thank You.
Thank you for your kind posts.
We are home. The chemotherapy treatment went well. My husband says he feels well. It did take four and a half hours!
I am exhausted.
I am still open to any and all suggestions on how to mitigate side effects. Do you have any suggestions on how to deal with dietary issues? We are a spicy food family. The nurse today told us that my husband couldn't tolerate ANY spicy food.
Hatshepsut
Hi
I think everyone is different when it comes to what is tolerated in food. I think it was Phil that said when he was so nauseated and had trouble eating, that spicy Chili? was one thing that he could get down and tasted good. I would try small amounts to find out what is tolerated, I found I did better if kind of snacked all through the day instead of trying to eat full meals. Also did much better if I ate before and had a snack during my infusions. A couple of times when I ate full meals, like when friends took me out to eat was when I got really sick and vomited (I guess I thought I had to eat it all because we were out). Didn't have the exact same chemo as your husband though. And I remember seeing that many have had success with eating melon, really helps with nausea and I imagine it helps with hydration too. One thing is to keep sipping water all through the day, I just kept a jug of room temp spring water by my side and kept filling my glass, and a little fresh lemon or lime wedge squeezed in my glass sure helps too. After a few treatments I did develop a really bad sort of heart burn pain but worse, tried over counter then different scripts, the one that finally worked was nexium, it was wonderful for that. Hope all goes well for him with the chemo and no real bad effects. Also, try and get some rest yourself, even if you have to get a sleeping pill. You won't be much help for him if you get yourself too exhausted and run down. If I think of any more things that helped me I will post again.
Pam0 -
I am so glad it went well.Hatshepsut said:Thank You.
Thank you for your kind posts.
We are home. The chemotherapy treatment went well. My husband says he feels well. It did take four and a half hours!
I am exhausted.
I am still open to any and all suggestions on how to mitigate side effects. Do you have any suggestions on how to deal with dietary issues? We are a spicy food family. The nurse today told us that my husband couldn't tolerate ANY spicy food.
Hatshepsut
I am so glad it went well. Chemo days can be very tiring; I hope you can both can rest tomorrow. I agree with Pam about lemon or lime in water; sometimes I can't tolerate the taste of plain water; there is a metallic taste that I get, but a little lemon or lime really helps. The issue with spicy foods + even mint toothpate is my mouth goes on fire; I think you just have to see what your husband can tolerate + what is appealing to him.0 -
Facial Redness
Thank you, again, for your suggestions. I need an anchor and this board is a wonderful support when people share information (and moral support!) as you have. Thank you.
We do have a visiting nurse service (for now) to deal with his fistula. Other than that, I am the care "team." It does get very stressful and exhausting.
Per your suggestions, I'm pushing my husband to drink water constantly. He doesn't like lemons or limes unless they are in desserts, so he is resistant to my squeezing their juice into his water. Who knows, though? That may change. I'm also defaulting to small meals of soft foods.I'm augmenting his diet with Ensure and I continue to prepare fresh juices for him and smoothies.
My husband does have some decided facial redness today. What do I do about that? I put some Eucerin on his face. Good idea or not? Are there better solutions?
Hatshepsut0 -
Not sure about the red face.Hatshepsut said:Facial Redness
Thank you, again, for your suggestions. I need an anchor and this board is a wonderful support when people share information (and moral support!) as you have. Thank you.
We do have a visiting nurse service (for now) to deal with his fistula. Other than that, I am the care "team." It does get very stressful and exhausting.
Per your suggestions, I'm pushing my husband to drink water constantly. He doesn't like lemons or limes unless they are in desserts, so he is resistant to my squeezing their juice into his water. Who knows, though? That may change. I'm also defaulting to small meals of soft foods.I'm augmenting his diet with Ensure and I continue to prepare fresh juices for him and smoothies.
My husband does have some decided facial redness today. What do I do about that? I put some Eucerin on his face. Good idea or not? Are there better solutions?
Hatshepsut
Not sure about the red face. John was red on the Oxy. His face and arms were red. He had a reaction to it on the 7th treatment and a reaction on the 8th. They took the Oxy out of the mix after that. He was on Folfox + avastin. He has the mutated gene so he can't take the other drug.
Someone will chime in on it. I have read it can cause a rash also. You take care of you too. Thinking of you both. Paula0 -
A woman who came in for disconnect during my chemo had a red face and the chemo nurse told her the steriod given prior to infusion causes that in some people.
Glad you have a plan!0 -
Steroidsdianetavegia said:A woman who came in for disconnect during my chemo had a red face and the chemo nurse told her the steriod given prior to infusion causes that in some people.
Glad you have a plan!
Caused my ears to go bright red.
Hatshepsut...Is your husband's blood pressure good? I know sometimes when it goes high it can cause red face.
-Pat0 -
Sixteen going on 92....Jaylo969 said:Steroids
Caused my ears to go bright red.
Hatshepsut...Is your husband's blood pressure good? I know sometimes when it goes high it can cause red face.
-Pat
Thanks, Jaylo.
As the nurses tell us, my husband has the blood pressure of a sixteen year-old. That is not, I think, the problem.
The redness on his face and nose has lessened in the last hour. Maybe the lotion worked.
Hatshepsut0 -
Hi Hatshepsut,I rememberHatshepsut said:Sixteen going on 92....
Thanks, Jaylo.
As the nurses tell us, my husband has the blood pressure of a sixteen year-old. That is not, I think, the problem.
The redness on his face and nose has lessened in the last hour. Maybe the lotion worked.
Hatshepsut
Hi Hatshepsut,I remember that one patient in cancer center got red when he was having oxi,then the oncologist came to give him some oxygen,after a while his redness was gone.He complained that never happened before,just that treatment.As you know,the body may react differently each time to chemo.I think the oncologist has idea to deal with the redness.Next time when you see the doctor,bring it up.Take care.0 -
Stop making him blush! ;-)Hatshepsut said:Facial Redness
Thank you, again, for your suggestions. I need an anchor and this board is a wonderful support when people share information (and moral support!) as you have. Thank you.
We do have a visiting nurse service (for now) to deal with his fistula. Other than that, I am the care "team." It does get very stressful and exhausting.
Per your suggestions, I'm pushing my husband to drink water constantly. He doesn't like lemons or limes unless they are in desserts, so he is resistant to my squeezing their juice into his water. Who knows, though? That may change. I'm also defaulting to small meals of soft foods.I'm augmenting his diet with Ensure and I continue to prepare fresh juices for him and smoothies.
My husband does have some decided facial redness today. What do I do about that? I put some Eucerin on his face. Good idea or not? Are there better solutions?
Hatshepsut
Use non-scented soap for one, that helped me with the rash.
Also, heat and sun made it worse.
I'm not real sure about the Eucerin, the fewer additives like fragrances the better when dealing with the rash.
Hope this all helps
-phil0 -
Hi Hatshepsut,Hatshepsut said:Facial Redness
Thank you, again, for your suggestions. I need an anchor and this board is a wonderful support when people share information (and moral support!) as you have. Thank you.
We do have a visiting nurse service (for now) to deal with his fistula. Other than that, I am the care "team." It does get very stressful and exhausting.
Per your suggestions, I'm pushing my husband to drink water constantly. He doesn't like lemons or limes unless they are in desserts, so he is resistant to my squeezing their juice into his water. Who knows, though? That may change. I'm also defaulting to small meals of soft foods.I'm augmenting his diet with Ensure and I continue to prepare fresh juices for him and smoothies.
My husband does have some decided facial redness today. What do I do about that? I put some Eucerin on his face. Good idea or not? Are there better solutions?
Hatshepsut
If your
Hi Hatshepsut,
If your husband doesn't mind the taste of the water, he doesn't need the lemons/limes squeezed in. There are some days when I just can't tolerate the taste of plain water.
I am on folfiri + avastin + I often get facial redness, usually several hours after chemo is completed. It just goes away on its own.
You are doing a fantastic job of looking after your husband; I hope you are able to get a break once in a while to rejuvenate.
Best wishes, H!0 -
More questions.
Thank you for your replies. I know I am a caregiver rather than a patient, but this colon-cancer specific board is a lifeline for me. Thank you for helping me cope and for helping my husband heal.
My husband's facial redness seems to be resolved. And, he is also once again having bowel movements. In fact, he is having a number of bowel movements (four or five a day) after several days with none. The movements seem normal and definitely are not diarrhea. I don't think I should worry about the frequency of normal-looking bowel movements, should I?
Appetite and weight, however, are on the decline. I'm pushing Ensure and small tastes of other foods. He told me he wasn't sure whether he was nauseated this morning but he didn't want to finish his normal cup of hot chocolate soy milk and he didn't want breakfast. I gave him one of the anti-nausea pills we were given by the oncologist and things seem to have calmed down. Does chemotherapy nausea come and go (his treatment was on Wednesday)?
It seems that we are quickly being trust into the maelstrom of chemotherapy side effects and challenges.
This morning my husband was pretty "down." He told me he doesn't know whether he can beat this and whether it is worth putting me through the myriad struggles involved in caring for him. While my husband has Xanax for anxiety, it occurs to me that it may be time for an anti-depressant. I have absolutely no experience with people taking anti-depressants. Do they work? Do they interfere with the chemotherapy drugs? Do you get them from the oncologist or from another type of doctor?
I am, of course, at his side forever and always. (We've been married for forty-one years.) This morning's conversation breaks my heart, though. I know the fight is going to be tough. I know the oncologist gave us a 50/50 chance of this working. I also know that we have a chance and, short of debilitating side effects, I think the fight is worth more years together. I also know that we have the option of addressing his cancer in more non-traditional ways. The fact that his tumor is actively growing, however, has caused us to opt for chemotherapy to stop/arrest the growth of the tumor with traditional chemotherapy at this time.
Forgive me for going on and on. It has been a hard morning.
Hatshepsut0
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