Mom's cancer is back - 1267277

Hi Carrie,

I'm sorry to hear about your mom's troubles, knowing how difficult it is for you as well.

If it is the specific chemo (alimta) that is causing her nausea and poor appetite, her doctor may suggest a switch to something else. About the only way to know if it's the alimta is to take a break from it and see if her symptoms improve. If she's not already doing it, she may want to take her anti-nausea medication on a schedule rather than when she begins to feel nauseous. It's easier to prevent than to get rid of nausea.

As far as her back pain, has she been diagnosed or scanned for bone mets, and if so have they been radiated? Radiation can often provide relatively quick relief from pain.

Some home health resources may be available through her insurance; you'd have to check to find out what services are reimbursed. There may also be volunteer programs available. Perhaps her cancer center can direct you to such programs.

Good luck,

JimC
Forum moderator

If she has compression fractures, I'd ask about doing vertebroplasty. They insert a spinal glue into the fracture. For my first chemo I had carbo/alimta. Then I had a recurrence 2.5 years later and did the same combo. By my 3rd infusion, I had a allergic reaction and can't use it again. I agree with talking with onc and trying a switch. Was her tissue tested for mutations this time around? Take care, Judy

As Judy suggested, perhaps a consultation with an orthopedic surgeon might be in order, to see if there are any interventions which might help her.

As far as diet, products such as Ensure and Boost can help provide calories. In general when appetite is low it is good to experiment with different kinds of food to see if there is something which seems appealing. In the past, GRACE members have reported that some food choices that seem quite unusual have worked well in a particular case, so don't be afraid to experiment. If a fast-food cheeseburger sounds good for breakfast, go with it. Although you'd like her to eat a well-balanced diet, at times you just need to find something to give her some calories.

Good luck.

JimC
Forum moderator

Usually reactions happen with a platinum like carboplatin or cisplatin and during infusion so the chemo staff keep a close eye out for that and react quickly.

Anything you think might help for eating is a good idea. The exception is trying to force it on a person, we've had those who say that just makes them feel guilty. It's funny Jim's example was fast food because that's what my husband would eat. Today we stay pretty far away from those places but at one time they were important. I like to mention bacon for those who ask, it's an item that seemed to help tremendously and I put it in everything, even cooked with bacon grease. Magace helps for some as well.

Too I just wanted to second what Jim said about nausea meds being taken on a schedule and not waiting to get sick.

I hope your mom feels better soon,
Janine

Here's something Dr. West wrote about chemo and appetite:

"It's quite comment for people to have taste changes that lead them to like foods that they previously didn't favor and develop less of a taste for some of their previously favored foods. I don't see any clear pattern to their new likes and dislikes. Many people receiving chemo describe a metallic taste or a salty taste, so we often suggest blander foods. Particularly for people having problems with nausea, it's possible to develop a "conditioned taste aversion" from an association of nausea with a food someone happened to be consuming at the time. That tends to happen less with familiar, blander foods, so we often recommend those in the days after chemotherapy.

Otherwise the so-called BRATS diet is a conservative one to help people with a delicate stomach: that stands for bananas, rice, applesauce, toast, saltines.

Finally, nutritional supplements like Boost or Ensure are a great source of nutrition in a small volume, so a fine choice for people with a marginal appetite. Many people feel that a lot of the flavors of the drinks taste chalky. One option is to use trial and error to find brands and flavors that are more palatable than others. Another option is to add crushed ice to the supplement to make it into a frappe, which some people find makes it more palatable." - http://cancergrace.org/forums/index.php?topic=1599.msg9357#msg9357

There are additional suggestions in the other posts in that thread.

JimC
Forum moderator

Hi Carrie,

There's no problem with liquids only if that's all that seems palatable. If you can provide some nutrients that way with ensure or boost or a milkshake or whatever, all the better. Some times the effects of nausea can lead to dehydration, so fluid intake can be important.

Although each patient's treatment plan can be individualized, usually the platinum combination is only used as first-line chemo. Platinum drugs depress bone marrow function, and their continued use can be detrimental to blood counts, making further chemo difficult or impossible.

JimC
Forum moderator

Hi Carrie,

This has been discussed here, so not a problem at all. There is evidence that it or it's components can help with nausea and appetite. You can read a detailed discussion here:

JimC
Forum moderator

I think this subject is fine and many people have unfavorable effects though many swear by it's ability to calm and manage pain. There are other methods of ingesting cannabis such as cooking with it or oils made from it. There are vaporizing devices such as vapor brothers who make one in the US and is touted to be free of harmful fumes from the heating element. Smoking can cause immediate problems such as cough, congestion and general irritation to the lungs though the amount one smokes I’m sure plays a big part.

Ginger is used to combat nausea though it doesn’t hold a candle to the prescription nausea meds I did use it in my cooking during the 3 or so days after chemo infusions for my husband.

Like Jim said trial and error is the only way to find the things someone will have an appetite for. Unfortunately I gained a lot of weight during this time but my husband also maintained above 100lbs if just barely.

After the steriods wear off (the day following infusion) it’s possible that all your mom will accept is fluids and ensures plus are an easy go to.

Below is a link to a blog post on 2nd and so one lines treatments, http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
and one on treating nausea, http://cancergrace.org/cancer-treatments/2009/05/19/cinv/

I hope your mom does better once everyone learns the tricks of the tread so to speak. ;)

Much hope for the upcoming infusions,
Janine

I've not heard of marijuana helping with pain but with appetite, nausea and insomnia. There are prescriptions for appetite enhancers-marinol is one and I think it's a synthetic cannabidiol and would be legal.
Take care, Judy

I'm sorry your mom is suffering again, and that you're not living near her. I had that experience when my mom had kidney cancer, and I know how frustrating it is. Is it possible for you to participate in any family conferences with her doctor via Skype? Ask the most computer-literate person you know to help you set it up, if you need to. You may get a lot more up-to-date information on her condition, and your contributions to her care may be more timely and therefore more satisfying.
When my nausea was at its worst, I was told to keep hydrated with what tasted to me like a sickly sweet sports drink, and it made my nausea worse. I finally settled on a couple of cans a day of low-sodium V-8, because I'm not particularly fond of sweets, and found that very satisfying. (This was not all the liquid I got, just a satisfying boost.)
Good luck, and know that you, your mom, and the rest of your family all have all of our best wishes.

I think that is one of the things that GRACE is here for--as a place you can vent your fears and frustrations, where others have been through similar situations, where sometimes there is useful advice, and where you can be reassured that whatever your motivation, you are doing all that you can and should. We all function on the information we have at the time, and can you imagine how the doctors must feel when a new mutation is discovered after a number of patients have been lost for want of a targeted treatment being developed in time? They would be useless if they wasted time on what might have happened had they known more or done more, and you will you. The fact that you are there for your mother, today, in her current situation, is the most important gift you can give her. Carry on, Carrie! I'm thinking of you.
Nan

I agree with Nan and there's no judgement here. We want the best for our ourselves and loved ones so we come to Grace in search of not just the new and improved but for the hundreds of tiny bits of information that an appointment with an oncologist can't provide. And support, lots of good hearted support.

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Janine

Hi Carrie,

I just wanted to say that you aren't alone. Like you - I don't live near to my dad (recently dx with lung cancer) - and am finding it really hard not being there. Having potential health issues yourself can't be helping. It does all suck!! I think it is great that you have managed to be on speaker phone for appts, it sounds like you are doing a lot to keep involved and help your mum. Thinking of you.

Carrie,

I'm sorry there's so much going on, and sorry I missed the thread until today. It's certainly concerning that her performance status is so marginal and that she's losing weight. It's hard to know whether this is because of the underlying cancer or the treatment, but if she got much worse just after chemo and then improves again in the next 2 weeks, you'll know it's from the treatment. This also implies that she can do better by making an adjustment (perhaps another agent or dose reduction). Obviously, if her functional status doesn't improve over the next few weeks, it will be difficult to threat the needle and treat her further.

As far as eating goes, it's completely reasonable to try everything from a liquid diet, perhaps supplemented with Boost or Ensure (and perhaps made into a frappe with crushed ice to cut the medicine-like taste that people often find objectionable), to Megace or medicinal marijuana, which some patients do find helpful (and others also find at least moderately helpful to manage pain). That said, I do agree that, coming from a place where medical marijuana is legal, I do think it's very common to see the enthusiasm about marijuana be about 90% based on recreational interest and medicine only providing a pretense.

Finally, I agree that it's definitely difficult to distinguish between possible metastatic disease vs. garden variety (non-cancer related) vertebral collapse from osteoporosis, or sometimes some other degenerative but benign cause of back pain. Along with MRI imaging, an opinion from a thoughtful orthopedic surgeon could be very helpful.

Good luck.
-Dr. West