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Moms story with many questions...

Momsbestfriend
Posts: 9
Joined: Apr 2007

Mom is 64 years old, strong and was having problems breathing after bronchitis - was sent for a chest x-ray on March 23.

I have been reading this site since I found out about a "shadow" on my Mom's chest xray on March 24. The past 2 1/2 weeks have been full of doctor visits, lung biopsy, waiting for answers, high stress moments, many tears, screams etc.
Last week on Thursday we did receive the final news that Mom has SCLC and yesterday we met with Onc at Strong Hospital and were given the news that the CT has NOT shown any spread of the disease and it is only in the lungs.

Tomorrow morning we have brain scan (although they dont think it has gone there) to be on the safe side before she starts treatment of chemo and radiation next week.

She has an upbeat attitude and has been taking good care of herself by eating all the right foods etc and plans to beat this disease.

My concern right now is how she is going to feel after her first round of chemo - which will probably be Tues-Wed- Thurs of next week. She wants to attend a dinner that Saturday night if she is able to. Do you think that will be possible or will she be too tired out??

Also, my father is so worried about Mom going thru pain (especially since she is so "normal" right now)- is there any reassuring words to give to both of them (and my brothers)to keep her wanting to fight and beat this awful disease?

If you are a caregiver or a survivor, can you please let me know about the burning pain from radiation, foods and more? Please.

My fear is she will be sick from chemo and radiation that she will want to give up the good eats and taking care of herself. Right now she knows she will get sick and says she will follow her diet - but I know that can change.

Sorry if this is all rambled.....I finally decided to post, because this is so hard to go thru and wake up every morning and WISH it was all a dream.

We have a huge strong family base (my Dad has 5 sisters and 4 brothers- and Mom has 1 brother and 5 sisters) and all are remaining positive for her and hope this helps with healing and bringing her into some type of remission down the road......

thanks for listening

CinciRick's picture
CinciRick
Posts: 23
Joined: Apr 2007

Hi MomsBestFriend,
I hope things went well with your mom's CT scan. I quess it may take a while to get the results.
I have only had chemo so I can't tell you anything about the radiation experience. There were a few surprises for me with chemo. I was expecting major nausea and eating problems but to my surprise chemo was easier than I could have hoped for. I suppose they have made great progress on anti-nausea drugs. I was given a prescription for anti-nausea medicine but I rarley used it. I think a 30 pill bottle lasted about 8 months. Before your mom gets the chemo they will give her an IV called pre-meds. It will be a custom mixture designed to go with her situation but it will probably include anti-nausea drugs, steriods, and other medications to reduce the chemo side effects.
For me it goes like this. I get chemo on Friday afternoon. The drugs(mostly the steroids) make me very active (almost hyper) on Saturday and Sunday. I would be so hyper that I would have trouble sleeping on Friday and Saturday night. Then on Monday the drugs ware off and I am tired on Monday and Tuesday.
If your mom reacts the same way, she will be able to be active and go to the dinner party 2 days after the chemo but may be tired the 3rd day. She may be sleepy after chemo if the premeds include something like Benadryl. After the treatment you should get a list of all of the drugs they gave her and you can google them when you get back home. That is what I do.
My first round of chemo is almost a year ago but I can still remember my first reaction was relief that is was so much easier than I expected.
I have been doing chemo for about 1 year now and have not experienced anything you could call pain. For me the worst part was getting my hand stuck every week for the IV. I finally got a port installed and I think it is great. When you see the Dr next week ask them about ports. It makes the experience easier for the patient and for the chemo nurses.
A few days after the chemo wrtie back to us and lets us know how she is doing.
FYI I have NCSLC but I was not a candidate for radiation. Your mothers experience will be different because of the radiation.
Here is a web site about ports:
http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport

Momsbestfriend
Posts: 9
Joined: Apr 2007

Thanks CinciRick for the reply. We had the brain scan this morning and thankfully my cousin performed the test which made Mom feel so comfortable.

The doctors that sent us here do not think the disease has spread to the brain and I am just PRAYING that we do not get any more bad news.

We are all doing as much research as possible and keeping Mom positive. ANd she is so positive that she can beat this with diet and support and treatment....

Please, let it be

kaitek
Posts: 156
Joined: Aug 2006

Hi Momsbestfriend,

I've always encouraged caregivers and patients to be as informed as possible of the latest news on cancer developments. I'll link up the site I would refer to:

http://www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&cid=72,73,74,75

That page focuses on small cell lung cancer. It is an aggressive type of lung cancer, but reportedly very responsive to chemotherapy. I read the most recent news that intensive dosages of the chemo combination of ICE improves the survival of patients. You should ask your mom's oncologist about it.

I don't have any experience with radiation, but I know of people who had difficulty in their throats from it. I have read that D-fraction extract of maitake mushrooms supposedly prevents or alleviates the side effects of chemo (and maybe radiation). You'll have to decide on your own if you want to try it. At the very least, some supplements will strengthen the patient's immune system as conventional therapies destroy it.

It's very good your mom has a large support network with your extended family. If they are anything like my relatives and my mother's friends, they will provide assistance in any way they can - with or without solicitation. Even the smallest gestures can be valuable. Despite some relatives being in another state, they call regularly to keep my mom's mind at ease. Socialization is important by any means.

Your mom sounds to have the right attitude.

Good luck and my best wishes to your mom.

Momsbestfriend
Posts: 9
Joined: Apr 2007

Thanks Kaitek for the website and have forwarded the information off to my family.

Also, Mom has been on the D-Fraction for about one week now and am hoping it will help with side-effects and more. She is also doing the grape-seed extract (pill) which I have read helps with side effects and white blood counts.

Waiting for results suck and we will keep a positive attitude no matter what. I am sure we will need much family help in the days to come and to help keep her positive.

Do you know of other supplements that could help during this time? SHe is eating healthy with lots of soy, veggies, fruit, fish and a little chicken. Water, vitamin water, green tea, flex oil, yogurt. No white breads, sugar, pasta or beef for the past 3 weeks almost.

She feels so good right now (healthwise) and am dreading the pain she may be in down the road.

The radiation is the scary part as Mom plans to stay strong thru chemo - but sooo unsure of what the affect of the radiation will have on her.

We just want to start treatment asap and are praying for good results on yesterdays brain scan.

please say a prayer.....

kaitek
Posts: 156
Joined: Aug 2006

Hi Momsbestfriend,

Your mom is taking D-fraction. When she has that replenished, consider MD-fraction instead. It's supposed to be even more concentrated and pure extract of maitake mushroom.

An update to others who may be following how my mom has responded to D-fraction: I had my mom start on D-fraction in preparation of undergoing Avastin in addition to Taxol and Carbo, which was the second week of March. Before D-fraction, my mom had to receive white cell booster shot every other week, alternating with red blood cells shot. Her white blood count stabilized enough that she didn't receive any white blood cell booster shot since first week of March. She was given one recently when her doctor took into consideration my mom reported she felt sick for a few days (which she recovered from on her own). And shortly after my mom started on D-fraction, she described her well-being as better. Is it having a placebo effect? She had always reported before that change she felt the same, meaning labored breathing after a walk. But it's been improved now.

I'm not too familiar with grapeseed extract pills, but I'm thinking it has something to do with resveratrol, which has shown anti-tumor suppression against stomach and colon cancer. Personally, I'd prefer to get it directly from red and purple grapes as it is concentrated in grape skin. But my mom isn't a fan of grapes.

I think your mom's diet sounds good with only these reservations or comments. Seafood in general is extremely healthy but you have to be mindful of toxic chemicals such as mercury and PCBs, which filter through the food chain. Luckily, wild-caught salmon has undetectable toxins and full of healthy omega 3 oils. Fish and other seafood with low contamination are pollock, tilapia, catfish, scallops, shrimp, canned light tuna (not albacore), crab and halibut. Stay away from shark, swordfish, mackerel, snapper, and trout.

I'm not too concerned about carbohydrates as white rice is a staple for Asians. (From your use of "shadow," I'm guessing you are Asian.) So I don't put any limits on white breads (we've slowly switched over to whole grain breads already anyway because it's healthier) or pasta (my mom lives on noodles along with rice). On sugar, I understand and believe her oncologist's point that carbohydrates are broken down into glucose in the body so sugar shouldn't be a problem. All cells need glucose for energy. When you look at the nutrition labels of fruits, you will see that they have high quantity of sugars, those in a different form. I don't think it's healthy in general to consume a lot of refined sugar, so I still like to limit that for my mom...and myself.

Emphasize on the veggies and vary them. Don't eat just one kind of vegetables. Your mom takes in more different anti-cancer agents when she eats a variety of cruciferous vegetables and others. As a reminder, radish, daikon and broccoli have the highest anti-cancer potential with isothiocyanates. The less cooked the vegetables are, the more they retain their nutrients. It's different with lypocene in tomatoes (which is also good weapon against lung, stomach and prostate cancer). Stir-frying and steaming are good cooking methods. I'm reluctant about eating vegetables raw as patients undergoing chemo have weakened immune systems and raw vegetables may have germs and bacteria (remember the spinach incident).

Let me just list the supplements and other foods my mom consume as part of her regular regimen. You can decide if you would like your mom to include them.

Vitamin D3+calcium, selenium, fish oil (more as an anti-inflammatory for my mom's arthritis than for the cancer), raw, minced garlic, walnuts, low sugar or sugar-free raspberry jam, & vegetable juice (e.g., V8).

Enrol takes a supplement called AHCH, which I believe is a mushroom extract. You may want to check out his personal story for an another perspective.

It is scary as I remember having those same fears of how my mom would cope with chemo. The oncologist went over all the possible side effects, even if they were rare. Not until my mom got one chemo cycle under her belt did I feel relieved.

It sounds counterintuitive but exercising as much as your mom can tolerate will energize her. It doesn't have to be much. Walking is fine.

I'm not religious at all (atheist actually), but I will keep your mom in my thoughts and pull for her. You're welcome to email/private message me at anytime, if you need to talk or have any questions.

Again, best wishes to your mom.

Momsbestfriend
Posts: 9
Joined: Apr 2007

Hi its me again, MomsBestFriend after a long absence from posting due to high hopes and possibly denial.

Mom went thru 16 rounds of radiation to the brain after scan proved positive for cancer, immediatley after radiation - she started chemotherapy.

Mom had to undergo steroids before and during radiation which made her a wonderful chatterbox -

As the year progressed and she finished her 3 rounds of chemo, the doctor told her that her tumor was just about gone and she asked to please let her undergo one more round of chemo.

She underwent her last round and subsequent xrays and scans showed nothing - that is, until last week.

She supposively has a 4cm tumor in the same lung, lower right and in the past 2 days has been coughing up some blood. I am worried as she and my father go visit doc at 10:30 this morning....so scared. I have to note that during CT scan she became ill and vomited while lying down and doc said blood in sputum probably from strain on body from getting sick. One week later she is now getting blood in sputum when she coughs and says it is not all the time. I just pray this isnt the beginning of the end as she has done soooooooo very good since her initial diagnosis last April

Mom is doign great and feels good and docs told her that her regimen of supplements and her diet helped her stay relatively healthy during and after treatments.

What i dont udnerstand is that her report last week said "most likely recurrent" and that the cancer has not spread to abdomen or other lung - if it IS cancer, why would they not have her start chemo immediatley? As it is, thye have us coming back on Feb 11 for another CT and then result on Valentines Day (nice)

Mom is strong and will continue to fight - her hair has pretty much all grown back (which she is very happy wbout) but now the worries are here all over again. We are a positive and strong family - but todays results have me worried.

Does anyone have any information they can share with me regarding blood in sputum fromc oughing and what this COULD mean?
thanks so much everyone.
Mom has taken her Maitake D and her Flax Seed Oil Pills everyday since initial diagnosis of "a shadow"

handle
Posts: 31
Joined: Feb 2006

hi daughter, first , don't get caught in the veggies and bs, I have sclc, was given a 5% chance of survival. I had massive chemo and radiation. I would eat whatever I could get into me, I was very ill from the chemo and the radiation burnt the heck out of my throat. You cannot eat veggies, your throat is toooooooooo sore, I ate chicken noodle soup,(warm) with toast in it. Warm!!!! , not cold, not hot, throat hurt too bad. It is good for some to say eat well, but I was so sick that I had no appetite and had to force food. I guarantee you though it was not veggies, my throat was soo burnt it hurt to swallow. I was given , "Magic Swizzle", it is lidocain and pepto bismol and that didn't even help. After your mom gets thru the treatments, she can eat whatever she wants ( I mean eating healthy) but while she is battling this damn disease , tell her to eat whatever she fells like eating, she will do way better than force feeding herself healthy foods. I don't mean to sound like a nut, but have been where she is going , six rounds of chemo and six and one half weeks of radiation to my chest, side and back. I would also not let them do brain irradiation (Prophylactic Brain Irradiation), first they must put in check the cancer in her chest first and only after there is no active cancer do they consider doing that type of brain irradiation. I opted against it because I did not like the long term side effects from it, short term memmory lose and dementia in approximately two years after receiving it.I researched alot . My cancer is inactive since finishing treatment in november of 2001, I am doing well. I will talk to you if you want , I will keep you in my prayers, they did help me keep my peace and sanity. This is a hard long road , so please let your mother eat whatever she wants, live healthy after she beats this, you cannot turn the clock back by eating healthy while you are being poisoned with chemo and radiation, it is enough torture with that let alone torturing yourself by trying to eat healthy, eat food, meat, nourishment and after you win this damn battle , then eat healthy. I hope this helps and again would be glad to talk . Mike

kaitek
Posts: 156
Joined: Aug 2006

Hi Mike,

"don't get caught in the veggies and bs"

Your comments appear to refer to my comments, so I'd like to elaborate more on this veggie bs. I don't think we're far in agreement, where nourishment is the primary concern for all cancer patients. I've said it before that 40% of cancer patients die from malnutrition. If it's a question of staying nourished, of course, consume whatever you can. I've even suggested Ensure supplements and protein shakes. One of my mom's oncologist first advice was to eat whatever she can, without restrictions on anything - not even foods with sugar.

I have no experience with radiation, but I know from a friend here with her father's experience how debilitating it is to the throat. Still, I wasn't taking into consideration the condition of momsbestfriend's mother when her throat will be raw and sore. But while she can down any kinds of foods now, it would be good for her to consume the vegetables with reported cancer-fighting properties. Of course, everyone can decide for himself or herself whether there is merit to those reports, but even the American Cancer Society is encouraging for people to get at least 5 servings of fruits and/or vegetables a day. Momsbestfriend appears to go along with that.

To be sure, there are lung cancer survivor members here who aren't regimented in their diet choices. Karen3leesons and Plymouthean have noted they don't restrict their diets. Well, they can correct me, if I'm mistaken. Karenlee3sons is the longest survivor here that I know of. They, obviously, show there are different approaches to surviving that's not dependent on diet. I don't want anyone to think my suggestions are better than anybody else's, as there is no definitive study to endorse the efficacy of integrative medicine or CAM. What anyone decides on ultimately is an individual choice, hopefully informed with the help of his/her oncologist and own research.

You're a SCLC survivor of over 5 years so I respect your opinion. And you do have more to offer in advice for momsbestfriend than I, as your lung cancer type is the same as her mother's.

Momsbestfriend, I am reminded of the benefits of proton beam therapy, which is a variation of radiation therapy, but more precise. It has less side effects. You may want to talk to your mom's oncologist to see if your mom would be a good candidate (not all cancers are) and if it is available in your area.

handle
Posts: 31
Joined: Feb 2006

sir, what I am trying to say , is" during treatment , eat whatever you can get into your body , after you have gotten the disease stable , yes , then fight with healthy diet, but while in treatment, the things I loved, liked most did nothing for me , but made me sick. I had to experiment and see what would I could keep down with out heaving. I don't want to cause any hard feeling as this is the most rotten disease in the world and any help from anyone is much appreciated. I am sorry for offending anyone, just trying to help and I do hold you all in my heart and pray for recovery from this dreaded disease. Mike

kaitek
Posts: 156
Joined: Aug 2006

It's not a problem and there's no hard feelings. I understood what you were saying, which is why I said that we weren't far in agreement. I might have needed to clarify my position if anyone doesn't take all my messages into context. I know if my messages were taken in isolation, I may sound radical & unconventional in my approach. Truly, I didn't disagree with what you said in the bigger picture.

I appreciate your contribution as a survivor to this site. Would love to chat with you tomorrow, if you're interested and can make it. Be well and take care.

molse
Posts: 9
Joined: Mar 2007

My father was diagnosed with St. 4 NSCLC in March. This grabbed hold of him so quickly that we didn't have a lot of time to weigh the risks and benefits of moving forward with chemo. My father did decide to move forward with chemo and possible radiation, and we are waiting on the results of his first scan to see if the chemo has made any impact on the main tumor. What a blessing. After some scary moments of dehydration and nausea - my father is finally getting used to what to expect. We anticipate good results on the CT scan. I would suggest scheduling an appt. a few days after the first round of chemo to receive fluids etc... You can always cancel, but it's good to know your mom will receive them if necesary...

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