HER2+ and herceptin not recommended

[mcgle]

Hi everyone

My onc (here in the UK) said that the benefit of herceptin to me would be negligible, and therefore he would not be recommending it. Having good prognostic indicators (small grade 2 tumour, clear margins, ER/PR+, no lymph node involvement or vascular invasion) obviously helped him to come to this conclusion.

So I had surgery, radiotherapy and am on tamoxifen.

My FISH score was 2.71, which I believe means low level HER2 gene amplification.

Is there anyone else out there, like me, who is HER2+, but was not prescribed chemo or herceptin?

Would really be interested to read any replies.

Mcgle

[hutchibk]

Being Her2+ (albeit "weak" Her2), I would seek another opinion. Her2neu+ means that your cancer has a protein attached to it that makes it much more aggressive than other breast cancers. Herceptin is our great hope at this point in time. You DO NOT EVER want your b/c to come back, but Her2+ means that your chances of mets (recurrance) are greatly increased. In my esteemed opinion, I cannot believe with all that we know about Her2+, that your onc told you that the benefit of Herceptin to you would be negligible. If I am wrong here or overly emotional in my opinion, I hope someone else on the site will correct me. The fact that you might be eligible for Herceptin as a first-line option is an opportunity that you should fight for!! Most of us here are on recurrance and are getting Herceptin as metastatic patients. I do not know my exact FISH score, but I believe that my amplification was considered low. I had a fairly straight forward dx, early stage 2B b/c, 2 cm tumor, one positive lymph node, Her2neu+, invasive ductal carcinoma. I had a right side mastectomy and removed 10 nodes. We did chemo, no radiation (had clean margins from surgery), and I had recurrance after only 1 1/4 years out from chemo. Herceptin was not an option for me at that time as a first line drug, however it was in trials as at that time as a first line drug.

I am not a doctor, so I can only tell you what I would do given your situation, but I would do ALOT of your own research and also re-post this on the main forum in hopes of getting recommendations from others on the site. I would not take any chances and I would personally fight for the opportunity of getting Herceptin. I believe a lot of others here would agree with me. Those of us with recurrance would probably have fought for the chance to get it a few years ago as a first line primary or adjuvant treatment in hopes of avoiding recurrance.

Also, please read this article about Tamoxifen and Her2neu... and show it to your onc. It is not necessarily your best option. New research is showing that. www.bcm.edu/fromthelab/vol03/is6/04aug_n4.htm

[mcgle]

Hi bhutchison and thank you for your reply. Sorry I haven’t got back to you before, but have just returned from a short holiday - something which didn’t happen last year for obvious reasons!

<?XML:NAMESPACE PREFIX = O /><O:p< O:p< font>This is a really difficult call. My onc (after consulting with an eminent professor of oncology) said that herceptin would only be of 0.8% benefit to me, so he could not justify it, either on the grounds of cost or possible health risks. And they are very money-conscious here in the UK, as we do not (generally) have private health insurance policies; we have the NHS instead...

My risk of recurrence is 6% which would be halved by herceptin. And even then, they don't know how effective it would be in my case, given the low FISH score. I don’t know what the recurrence risk is for a negative her2 tumour.
<O:p< O:p< font>
I will, however, be quizzing him about continuing with tamoxifen, given that I am post-menopausal (therefore could take arimidex), and will show him the article you so kindly referred to.
<O:p< O:p< font></O:p<>
<O:p< O:p< font>They simply do not know what the significance of low level gene amplification is, when all other prognosic indicators are good. It would seem that I am an anomaly; I just hope they’re right in saying that neither chemo nor herceptin should have been prescribed. There must be countless healthy women walking around who had breast cancer years ago, and unbeknown to them are HER2+. This is what I must keep a grasp of.
<O:p< O:p< font></O:p<>
<O:p< O:p< font>Thanks for your support.<O:p< O:p< font>

Mcgle<O:p< O:p< p></O:p<>
</O:p<></O:p<></O:p<></O:p<></O:p<>

[momdeeco]

I am 48 and new to the Her2+ group. Was dx 11/05, l.l cm Her2+++ grade 3, stage I, high risk, lymphatic tissue involved, neg lymph nodes. I received 6 dose dense of AC (entered a study), 6 weeks of rads. I have asked numerous times for Hercepitn, however my onocologist says the risk outweighs the benefits and not recommended for Stage I BC. Thinking of getting a 2nd opinion, but not sure whether it is too late to start Herceptin or if any oncologisht would agree to Herceptin. I finished my Chemo in April. Anyone else in a similar situation?

[janet/FL]

Hi Mom Dee
I definitely think you should get a second opinion. Taxotere and Herceptin would seem to be the next step unless you were very weakly Her2+++ then I don't have an opinion. I started the above tx. several months after finishing rads. I had decided against AC though it was recommended.
Let us know what you decide.
Janet

[saleboat]

I agree on getting a second opinion. I think that making treatment decisions for Her2 breast cancer based on stage is thought by some to be passe-- the biology of the disease is too important to ignore. You will definetly find Oncs who would be willing to treat you with Herceptin (I'm assuming that you're in the US, I know it can be more difficult outside of North America).

[momdeeco]

Thakns for your reply. Have gotten another opinion from an oncologist in the same group, and he also didn't think herceptin would be beneficial. Now wondering if I should get a 3rd opinion, or trust the 2 that I have. How do you get past a day without think about BC?

[Bev]

Hi, Am stage 2 node neg, grade 3, higher fish. Did AC, taxol and herceptin, radiation and tamoxifen. Here, when node neg and stage I, some are getting oncotype Dx test to see if Herceptin is warranted. Cost a lot though. Go outside your group for # 3. Good luck, BB

[momdeeco]

Thanks BB. I thought the onotype dx was for women who are ER+ and on Tomoxifen. I was ER-, PR-.

[saleboat]

Hi Momdeeco,

Sometimes getting a second opinion from the same practice is not as helpful as going outside of the practice, or to a major cancer center. I think birds of a feather flock together, so to speak. If I were in your shoes, I would really put all my effort into getting 'it' (your treatment plan) right the first time. I may be mistaken, but I think Oncs in the UK tend to be a bit more conservative when recommending Herceptin than in the U.S.

As for the mental part of this disease, it is very difficult in the beginning, when you have so many unanswered questions, to get through the day without thinking 'CANCER' every other second. I promise, it gets easier. Once you feel some confidence in your treatment plan and get underway, you'll feel some relief. I finished chemo a year ago tomorrow and while I still have my fretful moments, life for the most part goes on as it always did. We're all here for you, and don't stop asking questions.

Jen

[Bev]

Hey MomD, Oncotype is for node neg ladies after biopsy. If you can do herceptin w/o qualifying, just do it.BB

[momdeeco]

Thanks for your help. Have an appt. for a 3rd opinon on 10/9 at the University of Chicago Hospital. Wasn't sure where else to go. Saw they are ranked in the top 10 for "cancer hospitals." (?US AND NEWS REPORT MAGAZINE) Again thanks for your support!!

[karenann]

Momdeeco,

I was also stage 1, 1.3cm tumor, node negative, negative for vascular invasion, grade 3, Her2+++ and er/pr+. I did dose dense AC & T, 34 rads, Aromasin and just finished my year of Herceptin.

My onc told me I didn't need Herceptin (we had several conversations about this). I had this really bad feeling inside, so I got a second opinion at Stanford University and also went before a tumor board at a different hospital. I saw four oncs and three of them recommended I do the Herceptin.

I went back to my onc, armed with all kinds of information and wouldn't you know it... he had a change of heart. I'm glad he did, because I would have changed oncs to get the Herceptin.

Good luck,

Karen

[gin-tx]

Dear Bhutchinson,

Yours and my diagnosis sound almost alike. I had BC 10 yrs ago followed by radiation, no chemo. Then it was back in other side 10 yrs later, I thought I was 'cured', guess you're never home free.
I am now doing herceptin with Aridia, saw 3 onc and 2 wanted to do very heavy chemo, this onc I liked much better, he was 'much kinder' in his approach but first I had to deal with something on bone scan followed by MRI, revealed tumor on spine that changed my diagnosis to Metastatic Grade IV. I have had 5 Herceptin with Aridia treatments, am getting another CT next week to see how spine, lungs, liver, are progressing. They were fine when I had first CT, then a mammogram. Good luck to you and keep me informed of your progress. I could be getting other drugs before this course of treatment is complete, every 3 weeks is a new situation it seems.

Keep me informed of how you are doing.
hugs,
ginkott1@aol.com

[momdeeco]

Went to onocologist yesterday in Chicago. Will run FISH test to confirm Her2 +++. If still positive will receive Herceptin. (Hopefully closer to home) Forgot to ask if all patients with Herceptin have a port? She also recommended possible genetic testing due to family history. (Paternal Aunt and Paternal Great Aunt) Another decision to make!! Any suggestions? Have an older sis and 2 daughters, 18 and 25.

[mts]

I did the genetic testing... I just wanted to know for sure. I don't carry the gene, but still got breast cancer. Many women have had prophylactic mastectomies without being genetic carriers... whatever result you may have, the end decision is yours on what to do. Even if you turn out positive, that does not mean that your older sis or her daughters will have the same result. Each person is different.

My onc told me to begin screening my daughter 10 years younger than my breast cancer diagnosis age (I was 41). At this point, early diagnosis is the best cure... I think I will start her maybe 20 years younger than my dx age... She is only 5 now. I would hate to see her go through this #%@* at any age!!! Hopefully, by the time she is 25, there will be a cure! Yet, we can't be sure the cure is coming. So, she will be the best breast cancer educated woman she can be.

And, no, not all Herceptin patients have ports. Most of us have them leftover from original chemo treatments... although I will say I am very glad I have mine. I have a pediatric port. Very small and can barely see it or feel it. AND I am not a small person... I finished my year of Herceptin in Jumy. Will keep port for another 6 months (until my next onc appt) and then take it out.

Best of luck to you! let us know what you decide...
Maria (MTS)

[tousled1]

Last week when I saw my oncologist she did a genetic mapping which will be submitted for BRCA testing. The company that actually does the testing will contact my insurance and go over the reasons why they should pay for the test. I have a very strong history of breast cancer on both my father and mother's side to include my sister, both grandmothers, 2 aunts, 2 first cousins, etc) and have ovarian cancer on my father's side (his sister). I want the genetic testing done and then at the same time I don't. It won't matter one way or the other for me but I do have 2 daughters that I worry about. Just the fact that I have breast cancer greatly increases the chance that they will get breast cancer. My oncologist recommended that they start getting yearly mammograms at age 30. My oldest (31) just had her first and, of course, got called back for a diagnostic mammo and sonogram. She has a "cyst" which they believe is benign and want to watch for a while. I told her to have it taken out now!! My other daughter just turned 30 and I'm trying to convince her to get a mammo but since she doesn't have health insurance it's a problem.

[hutchibk]

I have learned a bunch from reading this thread... and more questions still remain for me as well.

Since I last posted, I have again found rising tumor markers (confirmed by measurable spots in my chest lymph nodes on PET) and my doc has added Taxol back in with my Herceptin. He says that it is no secret that Herceptin tends to work best with a chemo drug along with it. Some women do well with Herceptin by itself... but it wasn't doing the trick by itself for me.

Re: genetic testing... I have been learning that the BRCA genes are apparently not the only lines out there, but they are the only ones identified
at this time. So, coming back negative for those genes does not necessarily
mean that there is not a genetic componant! I know two sets of sisters who
both have b/c and are all 40 yrs or younger. Both sets of sisters tested negative for the BRCA genes, but their docs know that there has to be a genetic component to their cancers, just that the genes that they obviously have are not yet identified and can't be tested for. I am very curious about this as I am waiting to hear if my second Aunt is diagnosed with b/c this week. My first Aunt was dx b/c 4 years ago at 76 yrs, but we didn't think that was enough to indicate genetic predisposition. Now with my second Aunt at 70 yrs, we might be rethinking that. (my mom passed away at 57 yrs - no cancer, and my dad was adopted so I know nothing about his family of origin medical history).

I hope everyone is doing well! I am tolerating Taxol pretty well and waiting to see if this is the path that keeps mine surpressed. Otherwise, I am waiting and watching where Tykerb takes us!

[tousled1]

I know this should probably be posted under articles of interest (which Iwill do) but wanted to put it here also as a reply:



New Breast Cancer Gene Found
But BRIP1 accounts for only a fraction of familial cases, researchers say By Kathleen Doheny
HealthDay Reporter



<TABLE><TBODY><TR><TD class=ARTICLETEXT>http://www.healthday.com/Images/Editorial/WHI048.jpg <!--Spanish ID:535424-->MONDAY, Oct. 9 (HealthDay News) -- Scientists say they've spotted a new breast cancer susceptibility gene that might someday help women ascertain their risk for the disease.

Women with mutations in the gene, called BRIP1, have twice the normal risk of breast cancer, British researchers report in the November issue of Nature Genetics.

"Others have proposed that it might be associated with breast cancer, but we are the first to actually show it," said Dr. Nazneen Rahman, a professor of cancer genetics at the Institute of Cancer Research in Sutton, England.

Still, BRIP1 probably plays only a minor role in breast cancer risk generally, the researchers added, since the mutation itself is uncommon. The increase in risk associated with this gene is small in relation to the risk associated with mutations in other breast cancer genes, such as the better-known BRCA1 and BRCA2.

While mutations in BRIP1 increased a woman's risk for breast malignancy twofold, other gene mutations raise it much more. According to background information in the new study, mutations in BRCA1, 2, and another gene, TP53, increase the carrier's risk of breast cancer by 10- to 20-fold by age 60. Women with BRCA mutations have up to an 80 percent chance of developing breast cancer in their lifetimes, estimates the American Cancer Society. Mutations in other genes -- such as CHEK2, ATM and the newly identified BRIP1 gene -- are associated with a more modest risk increase.

In their study, Rahman's team screened more than 1,200 breast cancer patients who also had a family history of either breast or ovarian cancer for mutations in the BRIP1 gene. None of the women had mutations in either BRCA1 or 2.

Rahman's team found that nine of the women had mutations in the BRIP1 gene. In a control group of healthy women without breast cancer, just two of the nearly 2,100 women tested had the mutation.

The likelihood that a woman with mutations in BRIP1 would also have mutations in the other breast cancer-related genes is unlikely, Rahman said, "as all of these [mutations] are relatively rare."

Less than 1 percent of American women have a BRCA1 or BRCA2 mutation, according to the American Cancer Society. BRCA1 and 2 genes normally function as tumor-suppressing genes, so mutations in either can make them incapable of preventing breast malignancies.

The new study adds valuable information for researchers, although it doesn't mean women should get tested for the new mutation, said Andrew Godwin, director of the Clinical Molecular Genetics Laboratory and the Biosample Repository at Fox Chase Cancer Center, Philadelphia.

Previous research, he said, found that this gene "did not appear to have mutations that lead to an increased risk of breast cancer." But the previous study was much smaller, he said, and, in the case of the Rahman research, "because they screened so many people, they found a different type of mutation in this BRIP1" compared to the previous research.

While the frequency of this newly identified mutation in the population is low, the new research helps breast cancer researchers determine just how many of these genetic mutations are involved in the disease, Godwin said.

"Susceptibility genes" that have been identified so far account for up to 25 percent of familial breast cancer risk, Rahman said. So, there's still a long way to go to completely solve the puzzle.

The take-home point for women: "In breast cancer families without BRCA 1 or BRCA 2 gene mutations, there are likely to be several different genes, each with small (for example twofold) effects which will be acting together with each other and other non-genetic factors," Rahman said.

She agreed with Godwin that women shouldn't automatically be screened for this the BRIP1 mutation. Much more research is needed before that routinely happens, Rahman said.

</TD></TR></TBODY></TABLE>

[gin-tx]

I don't know what a Fish score is. I'm going to ask my oncologist tomorrow when I see him and see if he agrees with no treatment if you have a small tumor and low score. I don't have any idea what my Fish score was. I would have to ask. Are you doing radiation?

ginkott1@aol.com

[Bev]

MomD. I don't think you'll need a port for H exclusively. If your techs are currently hunting in your thumb and ankles it might be a good idea. If you have giant grape vines for veins you'll be OK. BB

[momdeeco]

Thanks to everyone who has replied to this post. I have learned so much. Waiting for results of the FISH test and have a Muga Scan next Tues. If all "o.k." will start Herceptin the next week. (No port/ good veins!) Do most of you continue to work full time with Herceptin? What is your major side effect? Planning a Hawaii Vacation in Feb. Do you think I'll be feel up to going? Again thanks for all your help and support. "Phil. 4:13"

Karla

[Hopeful]

momdeeco,

I had surgery, no chemo, and started Herceptin while receiving radiation therapy. I am now receiving Herceptin every three weeks and taking daily Femara. I do not have a port, they use very small needles and it is not a problem (thus far, anyway!) for me to receive the infusion through a vein in my arm. I have had three infusions, and they have become easier each time. With the initial loading dose, I was given Tylenol, an anti-emetic and a huge dose of Benydryl. The only problems I had were with the anti-emetic (constipation) and the Benydryl (put me out like a light, was "hungover" next day). The last two infusions I had without any prep. I have had no side effects at all. I drive home by myself afterwards and do some work at home before bed. I am back in work the next morning and feel fine. I think people who have chemo have more problems with side effects. Maybe I am just able to adapt to the drug very well, but, based on my own experience, I would expect you could both work full time and enjoy your vacation. Good luck to you.

Hopeful

[gin-tx]

I think it's great you won't need a port but it also depends on how many treatments you will be receiving. If only a few then you should be fine. I don't have any idea how long I'll be taking herceptin, maybe a couple of yrs and maybe forever as for the status of my cancer. You will feel fine with traveling in February. I wouldn't plan to go day after a treatment, I am usually pretty tired. And as far as working, I work 6 hrs a day which is all my onc and surgeon will allow me to work. And I am very tired by 2 pm, I come home and rest and am not out in stores running around or shopping. Unless I need to go to grocery or pharmacy. Good luck with your treatment. By the way my veins are terrible and I couldn't manage without a port.

hugs

ginkott@aol.com

[Bev]

Karla, Everyone is different but after treatment for a few weeks or months you'll know how herceptin affects you. Go up to the purple bar above and click on search. Query Herceptin side effects and you'll have a wealth of info. H has been good to me. Crappy nails, runny nose, forgetful and I sleep a little more on weekends. Other than that I feel great. I would say H by itself does not affect my ability to work or play. It took a while for the AC/ taxol cloud to burn off. Best of luck. BB

[gin-tx]

I know everyone is different but I find I cannot sleep the night after my Herceptin treatment. One treatment I had, slept about 2 hours that night, then up until 5 am, this past treatment my onc gave me a RX for sleeping pills, I slept about 3 hours, then was up until 4 am. Tried to go to work next day, lasted 4 hours, went home. I was so groggy and just felt literally awful. Are others out there having sleeping difficulties.

ginkott1@aol.com

[tousled1]

Gin-TX,

Every since I started Herceptin I've had a terrible time sleeping. Have tried Lunesta, Ambien, and now on AmbienCR. I can fall asleep but then I'm up wandering around in about 2-3 hours. Not sure if it's the Herceptin or just that there is so much on my mind. In any case, I've seen quite a few women on this board who experience sleep problems.

[Bev]

I do sleep lightly now and if I wake up it's hard to fall back asleep. It could be H, I'm writing it off to stress. With ambien. I had to take 2. I only take them the day before a really stressful event, like chemo. BB

[peace]

Hi all
I had sleeping plobulm too.when I was started chemo.I slept 4hr in 4days.
I was so tired. I know my brain is WIDE wake.not sleeping at all.
and then I asked my onc and I got ambien but I still wake up middle of the night.I cloudn't go back sleep.
I took onther pill or even more I still have problem...
and another Dr suggest to take a Lunesta. this is much better but unpresent taste is so bad. but once I get used to I can't sleep enough. Dr suggested take a benedly with that.so I took every night ..until chemo and surgery done.
and I'm off any sleeping pill now.

[hutchibk]

Hi Hopeful

I have also had the bad Benadryl trips! We discovered that I only needed a 25 mg capsule to avoid any allergic reaction to the Herceptin. I used to get the 25 mg dripped from a bag, but that knocked me flat out, and the one time that they pushed it from a syringe into my line I had an out of body experience. It was pretty freaky! Now it is just a 25 mg capsule and no problem. I am also getting Taxol now, too (indefinitely) and that dosage of Benadryl works a-OK for it as well. I drive myself home from every treatment, too.

[hutchibk]

I didn't have trouble sleeping on Herc, but now that we have added Taxol back in, on days 4 and 5 I have trouble sleeping, along with the achy restless body syndrome... But I take Lunesta and 3 Motrin and it works really, really well for me.

[Bev]

Benadryl kicked my butt. I think I had more IV but can't say for sure. Gave me a wierd kind of heart racing rush. BB

[mcgle]

Mcgle (who started this thread) here again.

Well, my first post-surgery mammo is looming, and I am getting pretty anxious, as I received neither chemo nor herceptin for my HER2+, FISH weakly positive small tumour with focal DCIS.

I am just hoping that my treatment was correct!<O:p</O:p

<O:p</O:p

[Hopeful]

Hi bhutchinson,

I have had problems in general with antihistamines. I used to take two children's benadryl to go to sleep on planes. I totally understand the "out of body" experience. I guess individual reactions all depend on body chemistry.

Hopeful

[hutchibk]

yep, I understand! - my nickname much of my adult life has been 'half beer brenda' so that should tell you my tolerance level of anything that can be mind or body altering, including and especially antihistimines! It's interesting that I tolerate the chemo so well... but have historically leaned toward children's dosages of meds as well. LOL.
I am grateful that I do tolerate the chemo so well!

[momdeeco]

Thanks for all your input on Herceptin. My FISH test was 7.3 and muga was 59%. Was hoping muga to be a little better than that because it was 67% prior to chem in Jan. (AC) Will be starting Herceptin tomorrow~ every 3 weeks x 1 yr. Thanks again for all your support.
Karla
DX 11/21/05 AGE 47
ER,PR-,HER 2 +++
12/12/05 PARTIAL MASECTOMY
1.1CM NODE NEG,STAGE 1, HIGH RISK
1/05 CHEMO(DD-AC X 6)
5/06 RADS X30
10/06 HERCEPTIN X 1 YR

[gin-tx]

Glad they found a level that was good for you. I am having problems with spine (had a tumor on spine that was malignant along with BC, had to take 18 radiation treatments which started about the time I began my Herceptin/Aridia treatments). Am having terrible pain in spine and the last CT looked good, so am seeing a spine specialist on Fri before chemo. I have trouble lying flat at night. I take one pain pill and about an hour later a Lunesta. Does it give you a funny taste in your mouth, everything tastes bitter to me. This lasts me till about 3 or 4 am, then I'm awake and in pain so I take a couple of Alieve or Advil. I have had no trouble with Benadryl, in fact my nurse was so surprised, everyone is sleeping but me and I'm wide awake. I think it's the recliner in the chemo lab, not too comfortable so I come home and usually lie down for an hour or so. If I sleep then I'm up that night. But the first night after treatment have a hard time sleeping. That's why I changed to Fri so I won't have to go to work on Sat.

Hope you continue to do well and keep in touch.

ginkott1@aol.com

[hutchibk]

I understand that Benadryl can go either way - some people (like me) zonk out from it, but a lot of folks get the opposite effect, more of a 'wired' reaction. Maybe you are one of those? My sister-in-law is one who gets 'wired' and agitated from Benadryl. Hope they find what the pain is in your spine. Was the spine tumor separate and different from the b/c? What kind of malignancy was it? Osteo sarcoma?

I too have occasional sleeping issues about the 4th or 5th night after a Taxol/Herc treatment. Mostly just trouble falling asleep, basically insomnia. That's when I take Lunesta. I haven't noticed any funny tastes - no bitterness.

Thinking of you today, knowing that it is your chemo day...

[gin-tx]

You are so kind and thank you for thinking of me. This is what makes this web site worthwhile and such a lifter to all of us. I think the reason I can't relax during chemo is the fact that the recliners are not that comfortable and now with this new issue with my spine. I don't know how it the tumor in June was diagnosed, my surgeon called it malignant, Stage IV metastatic cancer, but now that you mentioned something I'm going to ask. I saw a spine surgeon yesterday before chemo, his PA thinks the pain down my arm, under arm and left shoulder is coming from my neck. I told her my neck doesn't hurt. She said it does not have to, she did some range of motion exercises, all were good but one and it was not too far off. Am to have an MRI from neck to lumbar spine, I asked about the port. She checked and said the port would not be a problem, they have not been made of metal in yrs. I guess they will call me next week to schedule it but have to take 2 10 mg valium as I'm very clostrophobic. So someone will have to drive me and bring me home. When I got home from chemo yesterday crashed for a couple of hrs. Nurse in onc office has changed my pain meds to take them later and also the Lunesta later so I will sleep past 4 am. I was taking too early and going to bed by 8:30 or so, then am up at 4. Also have this new pain in spine, all the pain down arm, etc. is when I lie down. Very strange. Keep in touch and I'll do the same for you.

hugs,

ginkott1@aol.com

[Bev]

Hey Mom 59 is not bad. Do not be discouraged.

Ah, benadryl. I felt like I was the only one with a racing heart while everyone else fell asleep. I guess pediatric patients are more likely to have this than others.

Gin-tx, I have read long ago about referred pain. I'm not sure about the details. But if pain shows up in a certain location, it could mean cancer in a different location. Hope it's not it but maybe you could google referred neck pain. etc. But don't scare yourself too much.

And last time I did MRI, did Atavan to keep me normal. Worked.