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After Chemo - What next?


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Old 05-03-2014, 03:33 AM   #1
Markywolfy
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After Chemo - What next?

My wife, Lorraine (51) is nearing the end of her 6 cycles (5th yesterday and final in 3 weeks) of (palliative) chemo treatment and do not know what happens next and can't find out much from our oncologist who talks in riddles.

She has an unknown primary (probably cervical but no sign or symptoms here) which went to the colon and then liver and small spots on the lungs. We have been told it is terminal although we do not know any timescale.

Lorraine has responded well to the treatment and liver functions improved so much (AST from 1060 to 178) and blood counts more or less normal and after a scan following the third session we were told the cancer has shrunk by 2 cms, fluid in abdomen (Ascites) gone and now no signs of cancer in the lungs so we were really happy. However after seeing the oncologist just prior to the fifth session we are now a little confused.

What we would like to know is what happens following the 6th cycle particularly as she is responding so well to the chemo with few side effects. We asked but this is when we didn't get any clear picture. We have been told they will re-scan her at the end of the chemo but told that once over she can 'get on with life'.

Why does Chemo have to stop when it is clearly fighting the cancer? Will she be offered more sessions at a later stage? If so when could this happen?

What happens to the cancer after without any treatment - surely it will start to grow again? Why wait for this to happen - why not keep Chemo up as a preventative solution?

How often will Lorraine be monitored?

Are there any drugs that can be used at home that can help keep the cancer in abeyance?

Is there anybody out there who can give us some advice?

Mark

 
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Old 05-03-2014, 06:54 AM   #2
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Re: After Chemo - What next?

Mark, I am sorry you are struggling with such serious issues without clear and helpful answers from oncologist. I can give you some general info but of course do not know her case specifically, and with an unknown primary it makes it even harder. First, chemo is typically done in rounds which put the cancer, hopefully into remission, a quiet, non-progressive stage for an undetermined period of time. It depends on the type of cancer, how aggressive it is, how effective the drug "cocktail" used, and the patient's own immune system, nutritional and general health state are. So after chemo, she should live as normally as possible, focusing on the important things to her, and adding in whatever you can manage as "extras" like special events, trips, visits with family, etc. She may stay in remission for several months. When symptoms start to reappear, time to get checked out, see what and where has cropped up, and attack it again with another round of chemo. Typically with widespread disease, each round gets less effective. It is impossible to give a timeline. I have seen people suddenly get worse and die, but I also have seen people go 5 years beyond what you are describing. Has a biopsy of any tissue been done? Cervical cancer usually always has some local signs-bleeding, discharge, bleeding after intercourse. Are lymph nodes
involved on CT scan? Ovaries enlarged?
What she can do for maintenance is make sure she eats well, including adequate protein, iron, and take a vitamin supplement daily. She should maintain as much activity as she feels like, resting when needed, and pacing herself thru day. The hardest part may be the mental worry and depression can set in for either/both of you. It is fine to get that treated if need be, so you can both enjoy and make meaningful what time together is left. You can also find counselors that specialize in chronic/terminal illness counseling. Later on, I would highly recommend hospice care. They take people who are estimated to have 6 months or less left, and are so very helpful and compassionate, knowlegable and kind. You can also get books from library on end of life decisions/planning that may help along the way. The trick is to keep LIVING, not focus on dying, and make this part of life's journey the best it can be for both. This will need to be a time of honesty, compassion for each other, giving and taking, and will be a rollercoaster, so staying flexible is essential. A good friend, clergyperson, family that are supportive are priceless assets. Don't be afraid to ask for help from others. Most people want to help, just don't know what to say, how to help, and may make mistakes that are insensitive out of ignorance or awkwardness. Try to tolerate that, as they mean no harm. She should be in control of who knows about it and how much. She will likely feel out of control of her life, so it is good to let her control what things she can. I hope some of this is helpful in general. If the primary source could be figured out, it would help a great deal in choosing effective chemo treatments, as the drugs are matched to the type of cancer. Good luck going forward, and I hope her Drs. get more helpful and forthcoming with information. You have found a very good supportive resource here, and I am sure others will respond as well.

 
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Old 05-03-2014, 09:30 AM   #3
Markywolfy
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Re: After Chemo - What next?

Thank you for your time to reply - I appreciate it.

Ovaries/Cervix etc has no sign but we think maybe it started here and was maybe eliminated by bodies defences but had already started to migrate to the colon - outer walls - all a bit strange for the doctors to identify.

You have clarified a few points which gives me some ideas for questions at next Oncologist visit.

Thank you again x

Mark

 
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Old 05-08-2014, 05:13 PM   #4
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Re: After Chemo - What next?

Mark,
Do you know what type of cancer it was? In other words, was it an adenocarcinoma, or did it have similarities to other types of cells, such as squamous or small cell. And what type of chemo was your wife treated with?

You referred to the chemo as "palliative", but it may in fact be curative. Only time will tell. Usually what will happen now is that she will be carefully followed, probably every three months at first and if she stays clean, then it'll go to every four months (probably after the first year), then every six months, etc.

The reason you can't stay on chemo forever (unless the cancer keeps recurring) is that chemo is toxic not only to the cancer cells, but also to normal cells. Too much chemo can cause you as many problems as the cancer itself.

One hopes that the chemo will have totally knocked out the cancer. And it can happen...I'm proof of that. I had C.U.P. in 2001, metastatic, third stage. I was treated with chemo (four treatments over 12 weeks) and radiation. I've been free of that cancer since October of 2001. I'm down to once every two years on the CT scans. My mother had breast cancer which wasn't discovered until it was third stage and, although she was on chemo frequently over an 8-year period, she did survive for 8 1/2 years and didn't even miss a day of work until the last three months.

Hopefully your wife will have a good outcome from the chemo. Don't give up hope. And if you're not comfortable with this oncologist, don't hesitate to go for a second opinion. At the very least, you want to find someone who can explain things clearly. A very wise doctor once said to me, "a doctor may be tops in his field, but if he can't explain things to you in terms you can understand, then he's probably not the right doctor for you." So true!

The other thing I would recommend is finding something to laugh about. Go to funny movies. Listen to comedy albums. Look at things differently with an eye to finding the humor in everyday life. Laughter is a wonderful boost to the immune system. And although it might not cure you, it'll sure as heck make it easier to get through all this.

Good luck Mark, and keep us posted on how things are going for Lorraine and you.

Ruth

 
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