I think cancer treatment can be in humane

linn65 · 03-02-2013, 10:36 AM

My radiation was finished on Wednesday....I rode that "high" for a couple days with pain. It is Saturday and I am soooo tired of being in pain! I think the best thing being single and home alone with family coming over some. I have a lot of alone time. I thought it would be nice just admit a person into some type of rehab center the last week of radiation. Feed them 3 meals a day, physical therapy and pain management and that would give a big push to recovery. In the USA we should do more for cancer patients. Not just find the cure but help the heal. We are not in a third world country. And they are making billion dollar profits on cancer drugs......more help to the cancer patient like that would be so nice. I wish the treatment could be changed. It angers me and I know it could be improved if it wasn't for money! Insurance/government. My soap box for the day...

'lizbeth · 03-02-2013, 11:05 AM

Linn65,

This is why we are celebrating the approval of Kadcyla, our newest treatment for Her2+ MBC. For many women this treatment is more effective and less toxic.

Why I applaud your thinking of ways to improve the cancer treatment experience, I encourage you to find ways to advance the standard of care.

We, the patients, can advance treatment by joining clinical trials that offer less toxic options for our cancer.

Keep in mind that you were offered the treatment that was the standard of care that was available at your choice of medical facilities. Other treatments are available, including more advanced treatment in radiation therapy.

The challenge with being newly diagnosed is that most shocked, traumatized new cancer patients do not understand the system. Thus, the tendency to blindly follow the first doctor's recommendation. And the tendency "to hit cancer with the strongest, most toxic treatment" available.

Depending on the characteristics on your cancer, that might, or might not be the case.

I strongly recommend anyone who is newly diagnosed to get several opinions before deciding on a course of treatment. Ask about the clinical trial options available at the treatment facility. With targeted therapies such as Herceptin, Tykerb and Perjeta and now Kadcyla, we can start questioning if chemo really should be standard of care for early stage, and primary breast cancer. Nothing will change immediately. But we, the patient, need to direct the industry by voting with our dollars.

Phase 3 trials can give a solid advantage in disease free progression and overall survival. Many insurance companies will cover the cost of travel, even out of state.

I ask you to consider joining a vaccine trial when you finish Herceptin, or perhaps a study such as the ENERGY study about diet, exercise and breast cancer recurrence rates.

Be The Change that you wish for!

Joan M · 03-02-2013, 11:17 AM

Linn65,

I'm sorry to hear about your pain, and don't worry about venting. The pain will eventually pass. I too had radiation. 36 rounds. Very sore at the end with some skin breakdown.

I give you three cheers for speaking your mind. Go girl!!

I'm an optimistic skeptic and question everything.

I'm sending you good vibes that you'll never need Kadcyla, Perjeta, or anything else.

Hugs,
Joan

CoolBreeze · 03-02-2013, 01:22 PM

I think you need to talk to your doctor's about pain control. Mine prescribes medications for pain and other side effects. There is no reason you should be suffering, there are many good drugs out there. They don't know to do it unless you tell them and ask though.

IrvineFriend · 03-03-2013, 01:06 PM

It's pretty rough stuff. There isn't a day that goes by that I don't have to make a phone call, go to an appt. and get poked with a needle and my 3rd round of THC is this week. I understand the frustration of the long road of pain and I'm just starting out so I can only imagine!!! You've now completed 2/3 of the legs of this triathlon and your hair is coming back! I do follow your journey and appreciate all the advise and help you have given me so please know that you've helped at least another person.

-Julie

linn65 · 03-03-2013, 07:52 PM

Thank you for the responses...it is Sunday night and the red/burned skin is improving. However, I went and watched my son play ball and wearing a bra for a little over an hour I swelled back up in areas. I am taking pain meds, using silvadine cream. It just seems like the tissue underneath is so incredibly tender and it is just pain no matter what I try. I fall asleep and end up some how on my left side and it wakes me up because of pain. I toss and turn all night! It just seems I sleep on and off all day and night never feeling rested. Just tired......how long does this pain last after radiation ?

BonnieR · 03-03-2013, 08:17 PM

Linn, I can't address your concerns but I couldn't help but notice that you wore a bra. It kind of made me feel sad that you felt it necessary to do so. Is there a way you can dress in something loose and comfortable that will allow you to not wear a bra? I hate that we have to make these concessions to conform. I did it myself and in retrospect wish I had found solutions other than painful and confining garments. Like not wearing them. I don't have any answers. Just empathy. Keep the faith

CoolBreeze · 03-03-2013, 08:39 PM

If she feels uncomfortable without one, there are very soft, forgiving bras out there. Try spanx bralallelajua, or there are some you can find at WalMart along the same lines. They are made of pantyhose-type material only softer. They won't give you tons of lift but you want protection not perfection. You also pull them over your head or from the bottom - no hooks and eyes. They will be a lot softer on your skin

BonnieR · 03-03-2013, 08:59 PM

Yes, Softee makes good post surgery garments too

kvogler · 03-04-2013, 07:26 PM

I hate to sound like a commercial but but I don't feel I was treated badly with my treatment at Cancer Treatment Centers of America in Illinois. This is that cancer hospital you see advertised on commercials. Hopefully, we will have had our last bout with cancer but I reccommend this place for any type of cancer. This is how a cancer facility should be. The founder of the hospital set out to create his own hospital after seeing his own mother being treated poorly as she fought breast cancer. Yeah, I still had to go through the customary treatments, but they add on nutritional support, homeopathic (herbs) support, and spiritual support as well. Local hospitals around me wouldn't touch on that stuff so that's why I flew 582 miles for all aspects of my treatment. My skin broke down too and they gave me this honey stuff and it really worked. It's called Medihoney and it's made from some sort of special amazon honey called Leptospermum. Website for it www.dermasciences.com You are just sticky and smell like honey wearing it twice a day but it keeps the area moist much better than other creams so the skin healed better and quick.

linn65 · 03-04-2013, 09:46 PM

It doesn't feel like a regular burn now it feels painful. It is really tender, and I just keep hoping I will wake up and it feels better. I could handle a sunburn but I think this just is different pain. I think it is more pain then after the masectomy. However, I am just flat out tired, and tired of treatments. Like all the treatments are cummulative and I just feel pain and simply wore out. Then I have these jabbing pains on and off. i feel like this is a toothache and it is always there no matter what you do or the pain pills you take. I am supposed to have a herceptin treatment on Wednesday, and I am going to call and see if I can do it next Wednesday. I just really, really need a break. I need a little time to heal so I can re-focus and be stronger. I feel like I have been up for days, drug thru the mud and even mentally I am at my wits end. I sure wish I had a husband that could help get me thru this, but I do not. The buck stops at me, and to repeat myself I am just plain tired, and I guess feeling sorry for myself right now. And I know people on this board understand....

Jackie07 · 03-04-2013, 11:13 PM

Lynn,

Undergoing treatment (and yes, radiation treatment can make one feel extremely fatigued) put us in a very vulnerable situation - both physically and mentally/emotionally. Be sure to mention it to your oncology nurse about the pain.

Regarding the 'husband' wish, let me tell you, they (at least mine) can be a terrible burden during trying times. I had to ask my newly retired 2nd Sister to come (from overseas) to help me out because hubby had to help Father-in-law take care of Mother-in-law who was in the nursing home due to Alzheimer's. Then 2nd Sister threw a huge fit because she couldn't accept the fact that her younger sister had been living in such terrible condition ... (with a husband who doesn't [know how to] do anything)

I ended up driving 2nd Sister home by myself (we had stayed at my Father-in-law's house fifty miles away after my double mastectomy - had thought it was the best arrangement... didn't last but a week!

Life is full of stress. Relationship can become an issue when everyone is under tremendous pressure.

And who knows? You just might meet someone during this journey...

linn65 · 03-05-2013, 12:47 PM

Thank you for the encouragement everyone!

. I did call the onc office and ask if I could delay Herceptin until next Wednesday. She called the doctor and he agreed I can go next Wednesday!! I am so thankful he did not push and say I had to come because if he would have then I would but I truly feel 1 week off won't kill me in the long run. But emotionally, mentally and physically I just need a whole week off with nothing but getting better, so I can feel better and continue. I know it won't be perfect but each day my radiated area is improving, and I just didn't want to feel radiation problems and throw on herceptin SE.....oh and here in Indiana it just started snowing and a winter storm warning. Now I don't need to worry about driving in snow for the cure...lol.

Patty F · 03-05-2013, 04:14 PM

Hi Lynn. I am also from Indiana.
I just wanted to let you know that the whole breast area on me that went through radiation is still very tender to the touch. I have asked the oncologist and Radiation Dr about this but no one can tell me why.
If my cat walks across my chest it hurts so bad. My seat belt hurts also.

Mary Jo · 03-05-2013, 06:08 PM

For me it's been 7 years since my radiation. The area where I burned very badly, is still tender to the touch today. I cannot wear a bra but wear a snug fitting cami.

Yes, you are right.......thinking back......cancer treatment really can be inhumane, however, it is all we know at this point.

Praying I never walk the chemo/radiation road again and pray for all those that continue to walk it. It is not an easy road.

Thanks for the post....

Mary Jo

Debbie L. · 03-06-2013, 08:01 AM

Linn65, you are so right -- we do get it. We've all been there, and we read your words and nod our heads. End of treatment can be one of the very hardest times, and it's sometimes a shock to find this is so, because we expect this to be done when we're done. Even more, others expect us to be done when we're done. Yet for most, it takes much longer than that to be done.

So be gentle with yourself. Expect that there will be a lot of emotion bubbling around for quite awhile yet -- fear, anger, frustration, anxiety. Also fatigue, which makes it all harder. I've heard it said that we should allow at least as long as it was from diagnosis to end of treatment, for healing back to our new normal after treatment. And that's just the physical part of healing. The emotional "stuff" can take longer. So keep coming here, where we understand. And be patient and gentle with yourself.

I know that there are husbands, mothers, sisters, even kids -- who are wonderfully supportive and helpful during treatment. I do hear what you're saying -- that it can be lonely without a partner. But I have to point out that this is not always the case. Sometimes even fairly decent partners just are not very good at any part of the medical or supportive stuff, and I've heard many a woman say that in some ways she thinks it would be easier if she were by herself while getting thru treatment.

As to your other comments about what should be done to support cancer patients, I don't exactly disagree. In that pie-in-the-sky world, that would be lovely. But in a world (and a country) where so many cannot get even the most basic health care, I think that it's unrealistic and even selfish to expect more than we currently get. I think it's more realistic to work toward some form of community support, whether it be with a giant breast cancer group, or a small one in one's own community. There are so many people to help -- people who fall thru the gaps during treatment, as far as getting enough of this important kind of ancillary support (transportation, meals, house-cleaning, some simple pampering). I know there are agencies and programs to help with some of these things, in some areas. But lots of people, for many reasons, are not able to access them. I guess it's back to that pie-in-the-sky world, but I do wish there could be a broader network of support, independent of "formal" health care. Even if were just in the form of an overseer, a case manager sort of person who would know all the local resources and could hook people up with them. In addition, this person would clearly see where there were gaps (for example, funds exist for help with gas costs but there are no drivers for those who can't drive), and work to fill those gaps. Much, if not all of this could be accomplished with volunteers.

We (society, especially medical society) talk about how there are more and more cancer survivors and so we must address their needs. But we could add to that and say that perhaps the best people to address those needs are the cancer survivors themselves, who are often in a perfect position to offer help to others.

Ooops, got going there. Back to YOU, Linn. I hope that you soon feel that physically, you're on the upswing as far as pain and energy. The rest (emotional recovery) will take longer and for most, is more of an up-and-down track although overall toward the up direction.

Debbie Laxague

BonnieR · 03-06-2013, 12:51 PM

Amen, Debbie! I will add that my cancer center has a free Navigator Program which I trained in It is persons in recovery helping newcomers navigate through treatment. The amazing thing is how few patients want to participate. Most turn it down! So that is the perplexing other side of the coin.
Linn, never think you are "feeling sorry for yourself". You are entitled to everything you feel. So glad you got the treatment break and avoided the storm at the same time. Serendipity!
I have a supportive husband but have heard many stories of spouses actually leaving when they are needed most. But I understand your wishing. I hope you have a network you can call on for help. And that you have suggestions of things they could do for you. People want to be useful but don't always know how
We are always here for you. Keep the faith!

linn65 · 03-06-2013, 03:37 PM

This board helps soooo much! Since my last radiation 2/27 it has been tough! I haven't went to work since last Tuesday, and I think or feel sometimes the perception of radiation isn't a big deal compared to chemo. I think both have there own set of problems and neither is a cake walk. The last week I didn't think I was going to make it for my muga scan and the follow up with radiation. I cried most of the drive thinking I can't do it, but I made it. Fortunately, all the medical people at the facility or incredibly kind, and I was able to dry it up before I went in for muga. I am sure I looked like a pathetic mess!

Anyway, the burn is improving daily and it is more tight and sore under my arm. Also, I did have two big crying episodes two nights in a row. However, today I haven't cried and feel a stronger then the past week.

. I can be a very lonely and mental battle for sure, and I can understand others feeling strong when finished with treatment. There is no way but up when you are battling, fighting, climbing this long road of Breast Cancer.

I know or am sure there are different supportive things in place but when you are in the midst of it all you are too exhausted working on the treatment to figure it out. A case worker would be ideal as Debbie said and they could set those types of things up. I know in gas alone it has cost over $100 a week just to get to treatment and a gas card would have been nice. Meals on wheels, prescription delivery, grocery delivery....All would be great!

People ask what they can do, but I have never been one to say..well, do this or that. I just know if I am on this journey for reason I hope I can pay it forward or help someone else knowing what it's like.

The tears of a BC patient or I should say for me has been at times such a deep grieving process and there are times when I wonder if I can make it through it all. However, each day I start over and try. I never knew I would have so many tears to cry, but I am hoping for a healing on the inside and out that I had no idea was possible.

This forum is my therapy and am thankful for it!!!

StephN · 03-06-2013, 03:47 PM

Linn -
Hopefully the Herceptin alone will not cause added side effects. Most of us get through it quite easily. Having had to go for daily treatments, I am glad your doctor thought it was ok for you to have a week with less running around!

The burn from radiation is actually rather deep. I had a triangle in my upper front right quadrant radiated, but actually had a burn coming through on the back of my right shoulder opposite the triangle! It looked like a medium sunburn, and there was NO other way I could have gotten it as I was keeping covered up, and out of the sun (such as we have here in the Misty Woods).

The pain I had was more like an ache and sore muscles. My massage therapist gently worked it when the skin was healed.

Keep repeating: Every day, in every way, I, Linn (or name), am getting better and better.

linn65 · 03-06-2013, 04:03 PM

It is weird but I don't feel like I have cancer anymore. I feel like they have been so aggressive with treatment that surely all this treatment took it away. Hopefully, wearing a bra tomorrow I won't swell up like I did after Saturday wearing on for an hour. I wanted to watch my sons ball game, and because I have my right breast still I feel naked without a bra on.

I am hoping doing herceptin alone with nothing else I will do okay. The last time I had it on Wednesday and by Friday night I felt fluish. However, the last two herceptin's I was doing rads too so I don't know what it will be like herceptin alone. I sure am keeping my fingers crossed it Is smooth sailing! My rad doctor did say the first two years are the most likely for reoccurrence and that will be my first stepping stone.

My breast surgeon won't use the word "cure" or its all gone. He said the only way I have to know if its gone is time. The longer I go the better odds I have! I know for sure when he orders my 6 months scans I am asking for a brain MRI too just because of this board. Maybe he will do one but if not I wouldn't know to ask for one either.