Cancer did spread to brain & liver - 1264141

borntosurvive
Posts:52

I can't find my post from several weeks ago. I had lost 12.5 kg and was feeling nauseous and had no appetite.
My doctors did 4 CAT scans. Chest, pelvis, neck, and brain. All previously existing cancers were larger. I now have a spot on my liver, and 2-3 spots on my cerebellum, which they are most concerned with. They did an MRI Friday. Although they hadn't seen the written report yet, my radiation oncologist felt safe in saying that she sees 2 mets to the brain. Maybe a third. They are setting me up this week for 'focused stereostatic treatment.' She explained the pros & cons or this or wbr. Also said that if more brain mets show up, they can use this method again. My onc said they won't treat the liver, because there is no good chemo for me to be treated with anymore. They already gave me the best, and all have failed. Can they use the 'focused stereostatic treatment' on my liver spot? It's not giving me any problems they can see. I'm also coughing up blood (few tablespoons a day). Which they don't know the cause of, probably a blood vessel in the tumor which has necrosis in it. I feel like a mess. I'm just tired. Is there any chance I'll still be here 9-10 months from now. I'm losing hope and ambition.

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Reply # - June 1, 2014, 06:01 PM

borntosurvive
Posts: 52

PS: I did start taking my anti-nausea medication 3-4 times a day and my appetite has increased and I am now eating again. Hope my weight stableizes because all my clothes now fit me again!

Reply # - June 2, 2014, 06:24 AM

JimC
Posts: 2753

borntosurvive,

I'm sorry to hear of your scan results. Is this the post you were looking for? http://cancergrace.org/topic/i-need-help-my-appetite-never-came-back The easiest way to find your previous posts is to click on your screen name below your picture; this will bring up your profile and a list of your posts.

As far as further treatment, from your previous posts it looks as though you've tried gemcitabine, carboplatin, alimta, cisplatin and tarceva. The remaining drug approved for second and later line therapy (here in the US, at least) is Taxotere (docetaxel). It's generally true that if a patient progresses through one or more chemotherapy agents, it's not likely another will be effective. You might want to discuss with your doctor the possibility of a clinical trial of a novel agent, something that is not standard chemotherapy.

Glad to hear that your nausea is under control and your appetite is back. Good luck with your radiation treatments.

JimC
Forum moderator

Reply # - June 2, 2014, 11:25 AM

catdander
Posts:

Hi born, I just wanted to reiterate what Jim said asking about clinical trials of a non chemo/novel type anti cancer drugs. You'll most likely need to get the brain mets under control before moving forward but it may be worth a try. If not a trial hospice works wonders for people who with stage IV cancer and not being treated with anticancer drugs. I don't know if you're familiar with Debra AKA double trouble but she's been on hospice and doing better than ever since dx. She's not the only one and it's a gutsy move but you can go off hospice at anytime and back on treatment for... say a novel agent. They're known for giving people back much of your lives for longer than without them. This link starts on page 33 of much of Debra's cancer journey. Somewhere in the last 10ish pages she moved to hospice. If you're interested maybe start at the end. http://cancergrace.org/topic/new-new-plan/page/33/#post-1263631

I'm so sorry you're in this situation and hope you can find some peace. Please let us know if we can help.

Janine

Reply # - June 2, 2014, 08:38 PM

Dr West
Posts: 4735

I'm sorry to hear about your progression.

To clarify, there's no value in doing focal radiation on a liver lesion, for instance, when the cancer can grow anywhere at any time. The problem isn't any one specific spot as much as the fact that there are likely to be new spots appearing as fast as you treat another.

Unfortunately, after several lines of chemotherapy, additional chemotherapy is unlikely to provide meaningful additional benefit. While a clinical trial is always something to consider, your doctor may recommend that focusing on symptom management and supportive issues is the most important and perhaps only intervention likely to be helpful. A clinical trial is great in some cases, but it would be unfair to pin high hopes on one when it's really something that is pursued just because there are no appealing options that anyone can think of.

I wish I had more to suggest.

Good luck.

-Dr. West

Reply # - June 3, 2014, 07:01 AM

borntosurvive
Posts: 52

Hi all, thank you for your replies.
To catch up, I'm being prepped tomorrow for 'focused stereo tactic treatment.' I think that's like, or is, cyber knife. Apparently I have only 2, maybe 3 very small spots on the cerebellum. So that's getting taken care of.

I'm very interested in the idea of going on hospice as DT did, but when I read her posts, I can't understand what they are doing for her. There's mention of ALK, and then other treatments. I have no mutations and Tarceva was living hell on me when we tried it. My oncologist did just mention Taxotere (Docy Taxol?) but he told my husband that the side effects were terrible and it might only give me maybe an extra month. I don't ask him how long I have, and I don't want to know. We are getting everything in order and then living as well as we can be. I was interested that DT was on an anti-biotic and would like to know more about how that works. I guess I can ask her. I can get home hospice here in Sydney if they think I need it. Not sure how it works.

They know that I'm game to try almost anything, but quality of life is important. The past year has been a slow but steady downhill. Now I find myself napping a few times a day, maybe going out for a walk. I have never been able to build up my resiliance or strength. Although I am definitely eating now and that may help with my tiredness.

My other problems are that I have some bleeding in my lung (they thought it's from the tumor that has necrosis) and it increased the other day. So they stopped my Clexane 40ml, and now I've coughed out two blood clots in two days. Been off Clexane since last Wednesday. So I'm stuck between a rock and a hard place.

Is there any hope I'll still be here in December? I'll try hospice if that helps my body cope, antibiotics if they help. Anything. I can't do more chemo because either they won't work for me, or they are not approved in the protocol.

Any more advice would be much appreciated.

Reply # - June 3, 2014, 09:16 AM

Dr West
Posts: 4735

borntosurvive,

Here's a link to what hospice is and isn't, as there is a lot of misinformation about it:

http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fac…

It should be noted that hospice practices may be different where you are vs. in the US, as practices are a little different even among different hospices in the same area.

The general goal is to focus on managing symptoms and maximizing quality of life, rather than pursuing anti-cancer treatments that are not likely to provide minimal benefit in absolute terms. The medication you mentioned, Taxotere (docetaxel), is one often used for previously treated patients with advanced lung cancer (and sometimes first line treatment). How people tolerate it is certainly variable, but it's not rare for patients to feel that the treatment is worse than the disease, particularly if they are at all compromised by the disease or cumulative effects or prior treatment.

Good luck.

-Dr. West

Reply # - June 6, 2014, 04:40 PM

borntosurvive
Posts: 52

Thank you all for your feedback and information. I have more comments to make, and more questions. But first I'd like to ask about something called 'microwave ablation?'

Someone I know who's kidney cancer has now a tumor on her liver is eligible for a trial for that 'microwave ablation.' Would I be eliglble for that for the small tumor on my liver? I.e. what do you know about that treatment. I understand they put a needle right into the tumor, and create a magnetic field around it. That's all I know.

They are going to try to get me in to a clinic Tuesday on palliative care. I'll be 'connected' with a small private hospital nearby that does that so I'll have some place to call when I need more help than I need now. If not Tuesday, then early July. I'll know more about what the hospice does after that clinic. At the moment I do have a community nurse who comes to visit me weekly, but that's all. My oncologist and I agreed that I could keep seeing him just to keep updated, but he's not treating me anymore. Still, something could come up at a later time.

Now I need your opinions on something else. I want to go on a cruise. I can't fly until late September (because of the punctured lung back in April.) So in the beginning of October I want to fly to Papeete and get on a ship and do a 10 night cruise, and fly back (I'm in Sydney.) People are treating me like I'll be dead by then, or just not well enough to go, and it has me in tears. I need this to look forward to. I'm not suffering other than arthritis and fibrymyalgia, which I can control. And my cough. I don't see why I can't plan to go on this trip. Probably my last trip. What would you do if you were me?

Sorry if this last paragraph doesn't belong here on Grace, but just thought I'd ask.

Reply # - June 6, 2014, 06:14 PM

JimC
Posts: 2753

Dr. West has said this about microwave ablation in the setting of metastatic lung cancer:

"There is essentially no data to support doing an ablation of a liver lesion in the setting of advanced lung adenocarcinoma. This approach hasn't really been studied in any systematic way, and I don't think there is any evidence that these approaches improve survival, just because metastatic disease will in nearly all cases be a multi-focal process. In other words, even treating a single metastatic lesion definitively will still not manage the problem of other lesions that can develop in other places over time.

I personally have never had a patient go for an ablation of a liver lesion, and I would say that all of these technologies are being marketed ahead of the strength of the evidence. Occasionally such technologies make good sense for people with a solitary liver lesion from colon cancer or a primary liver cancer, since these may be isolated and not be associated with diffuse metastatic spread, but we don't tend to see an isolated liver lesion from lung cancer without any other areas becoming involved over time." - http://cancergrace.org/forums/index.php?topic=10477.msg83915#msg83915

As far as the cruise, please don't feel that your question is inappropriate. Many of us have had to deal with these types of decisions, which aren't strictly medical issues. Personally I don't see much reason not to go if you feel up to it. My wife and I took traveled twice about three months before she passed, and they were wonderful experiences which I would not have wanted either of us to miss.

JimC
Forum moderator

Reply # - June 6, 2014, 06:29 PM

Dr West
Posts: 4735

I agree with all of my earlier comments about microwave ablation. I think it would be something to do just for the sake of doing something and would have no value to you. It may be marketed, because the place that does it will make money, but there would be no rationale for doing this.

I also agree that it's perfectly fine to plan for a trip, but I strongly advise my patients to get travel insurance to cover the possibility that a medical complication will interfere with their ability to travel when the time comes.

Good luck.

-Dr. West

Reply # - June 9, 2014, 07:39 AM

double trouble
Posts: 573

Dear Born to Survive,

I'm sorry I didn't see this and respond sooner. I don't know how Hospice works in your country, but I can tell you about my experience with the Hospice I signed up with.

I had become so sick and weak on treatment that I nearly died, so I decided that getting my strength back and feeling well was my priority and that treatment would have to stop. At least for now.
Janine (Catdander) said that it was a "gutsy move." I don't feel like it was so gutsy. I just wanted to continue living for as long as possible and I was in a situation where my doctors were telling my family that I had days to weeks to live, that I probably wouldn't ever leave the hospital, and that if I did I would never be able to live independently again.

But thanks to some very good care in a great facility and some really nice and dedicated doctors, I began to improve. My radiation oncologist visited me and said that further radiation treatment was not an option. My hematology oncologist visited on a day when I was really drifting in and out, not very lucid, but the gist was that he had options for continued treatments that we could choose from should I decide I was ready. At the time I was not ready!

I also want to clarify something for you about the antibiotic therapy I've been on. Antibiotics do not treat cancer. I have cancer in the center of my chest and possibly in some lymph nodes nearby. I also have a very active and stubborn lung infection that we have been fighting for nearly 2 years now. That is what the antibiotic is for. It is not for the cancer.

So with the help of my very good pulmonary (not cancer) doctor, I began to improve. I think I was given every antibiotic, antifungal, and antibacterial substance known to man in the process, but it worked and I began to improve.

Continued in the next post...

Reply # - June 9, 2014, 08:11 AM

double trouble
Posts: 573

Continued from previous post...

I was discharged from the hospital to a rehabilitation hospital because I had become so weak I could not stand, and I spent nearly a month getting back on my feet. It was during this time that I signed up with Hospice. They provided me with oxygen equipment, a wheel chair and a walker. I improved enough to move into an apartment and they began sending a nurse once a week. She goes over all of my medications and orders the refills I need, which are delivered to my door. She checks my pulse/ox and blood pressure, listens to my heart and lungs and asks if there are any problems, etc.

I also have had visits by the doctor to whom I have been assigned, respiratory therapists, a nurse practitioner, and various social workers who have helped work out insurance issues, and they brought me a hospital bed so I can sleep with my head elevated, which helps me breathe. Also available are clergy, who I have declined. If I want to go back into treatment I can opt-out of Hospice at any time.

The greatest thing for me has been pain control. I don't know how much my cancer contributes to the pain I experience (mostly bone and joint) but I can tell you that they worked with me until my pain was gone but I was still alert and able to function fully. That is probably one of the biggest blessings of Hospice. They do not want me to hurt. And when I don't hurt it frees my mind up to enjoy every minute of life to the fullest.

I hope I have answered some of your questions, and I promise to check in for a few days to see if you have responded.

To all my fellow Gracers hi! Love and (((hugs))) to all!

Debra

Reply # - June 9, 2014, 08:44 AM

marisa93
Posts: 215

Best of luck to you, Born to Survive! And I hope you are feeling well at the time of your trip :)

Love and (((hugs))) to you Debra!!!! You are a constant inspiration :)

Reply # - June 9, 2014, 11:23 AM

catdander
Posts:

Thanks Debra for checking in and responding. I apologize if the gutsy term doesn't fit here but you will remain one of the more gutsy people I know so I just assume your decisions are from a place of power, strength, and will as much as from desperation. (((hugs)))

Reply # - June 9, 2014, 12:31 PM

JimC
Posts: 2753

Great to hear from you Debra, and thank you for providing such helpful information. And if you don't like Janine's g-word, how about generous? That one describes many of your posts here, which always display your willingness to help other GRACE members.

I'm glad to hear that your care team is helping you control your pain, and that you are enjoying every moment. That is something we all need to do.

JimC
Forum moderator

Reply # - June 9, 2014, 01:57 PM

shy one
Posts: 49

Debra, Thanks for your very helpful information about hospice. Someday I will be taking advantage of it, but it is good to have the information ahead of time.

And Born to Survive, I, too, was given a few months to live, but that was five years ago and I've been on 4-5 cruises since. Dr. West's advice to get trip insurance is good advice for anyone, but especially for those of us who are concerned about having a limited amount of time (and would need our money back if that's the case. If not, well, then...) Best of luck to you.
Nan

Reply # - June 10, 2014, 03:47 PM

borntosurvive
Posts: 52

Dear Debra,
I needed some time to digest what you so kindly shared with me, plus I've been busy with doctors, and also so exhausted I probably take 4+ naps a day. I feel like a rag doll.

After reading what you described about what your hospice, and having just had a meeting with a palliative care doctor yesterday, I think our palliative care covers your hospice, and then later on, we have hospice. I can get everything through our palliative care that you mentioned, and I will when I need it.

As far as pain goes, I think mine is RA, and Fibromyalgia, which I've been treated for for years prior to cancer. I also have a thyroid disease called Hashimoto's thyroiditis, just adding that in fyi. When I was in chemo, it (the RA) went away, but over time it's come back. Although not so strong. Yet. For pain they gave me Targin (from when I had the drain in my lung) and now added in a bit of OxyContin. This is mostly because I get pain in my hands and arm from the RA and also one lymph node in my neck can ache quite a bit. These were waking me up during the night and giving me a bad nights sleep. Hopefully I can now sleep through.

As to living life to the fullest, I personally have to limit myself to just looking or be in conversation, or a gentle walk. My husband wants me to hire a wheelchair so we can get out more, but I'm resisting because I think the little bit of walking is better for me. Maybe I'll reconsider it though.

I have never had, nor heard of a hematology oncologist, and wonder if I need to 'find one' here? I know my doctors over at 'Chris O'Brien Life House' in Sydney, work in a team, so when they discuss me, they know which doctors I need But I wonder if I need to pursue this one independently through Life House? Since I have the problem of blood clotting (as is common with lung cancer) and now I have been take off Clexane due to my coughing up blood which increased a couple of weeks ago, but it back down to what it was previously now.....

Reply # - June 10, 2014, 04:02 PM

borntosurvive
Posts: 52

(Continued...) My first oncologist never even had me see a radiation oncologist, so that one I also did on my own 8 months after diagnosis.

As for anti-biotics, my current oncologist (I'm hanging on to him even though he's not 'treating' me anymore because I like his input and he's on 'the team') thinks I don't need them. My bleeding is caused by my tumor wrapping around the main aorta of my lung (I THINK that's where it's doing that), and so I'm at high risk of bleeding but also of blood clots. Maybe a pulmonary oncologist is what I need to add into the mix?

I have a cardiologist, and she agreed with stopping the Clexane blood thinner.

The news that it has spread to both liver and brain was a shock. I don't think we're both over it yet, because we are so limited as to what we can do to enjoy life, that it's dragging us both down.

With my collapsed lung, flying to meet our ship is a bit risky (but we intend to do it anyway as long as the last scan prior says it's ok to go), but if I don't have that to boost my spirits, well, I can just feel myself being pulled down more and more. I'll really feel like a loser in this fight. It depresses me just to think about it, and for the first time in 12 months, just thinking about it makes me want to cry. I can barely talk about it without getting upset.

Oh, Dr. West, yes, we fully expect to get travel / cancellation insurance and the woman at palliative care says they have experience writing all kinds of letters and filing all kinds of forms to insurance companies to get patients money returned to them. It would be a lot of money to lose.

I'm really glad, Debra, that we had this chance to talk, and that you had such a good run with your treatment. I wish you YEARS of helpful treatment!

Nancy

Reply # - June 10, 2014, 07:09 PM

Dr West
Posts: 4735

It's absolutely reasonable to get a hematologist/oncologist, but usually the palliative care specialist can do a good job focusing on symptom management without needing to delve into the details that the hematologist/oncologist would often focus on. More often, there's already a hematologist/oncologist involved, and then when a palliative care specialist is available, it seems like we're somewhat redundant in what we do.

Good luck.
-Dr. West

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