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Uterine Papillary Serous Carcinoma (UPSC): any others here???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

So sorry Linda. Teeth are a pain when in chemo. Many dentists are very hesitant. I had one tooth totally fall apart the day after my 5th chemo. My regular dentist was out of town. The dentist that agreed to do the work was fine with chemo. He filled it and I have not had any trouble with it. But many dentists feel it is to invasive to work on us when we are so open to infection. This is where the nuelasta saved me. My counts were never bad. I was told that is why I had neulasta from the beginning to keep me from letting the chemo knock my immune system down. Hope this can be resolved quickly for you. How are the rest of you doing. We have a quiet board this month!!

shortmarge
Posts: 296
Joined: Nov 2008

Went to my Oncol yesterday because last Tuesday and Saturday I had some funky vision things going on. On Tuesday it was my right eye on Saturday it was my left eye, it was like I was looking through a crystal. Called the doc on Saturday after it happened and she told me to come in this week. She said that is usually a sign of a migrane coming on but I did not get a headache, but she said it isn't a side effect of the chemo. She is going to send me to a neurologist. Also my balance has been off since last chemo so she is going to send me to an ENT to have my ears check, still she says it is not side effect of the chemo (funny how this happened after my third chemo treatment). But the tingling in my hands and feet are a side effect so the decision making needs to been done. She feels that three chemo rounds is good enough for her and that if I want I can stop. She said that there are no studies saying that six are better than three. If I decide to go ahead with the chemo she is going to lower the dosage because of the tingling in my hands and feet. I'm thinking I will go for #4 and call it quits.

I read this yesterday and it really has me thinking about finishing all six:

Treatment boosts survival from uterine cancer

A state-of-the-art treatment program developed at the School of Medicine increases survival from the aggressive uterine papillary serous carcinoma (UPSC) and spares some patients the need for added therapy.

The results are presented in the lead article of September's Gynecologic Oncology. The research team -- led by senior author Dr. Peter E. Schwartz, the John Slade Ely Professor and vice chair of the Department of Obstetrics, Gynecology & Reproductive Sciences (Ob/Gyn) -- determined that a combination of platinum-based chemotherapy and vaginal radiation was the most effective treatment for the disease.

"Our study defines a standard of care for this aggressive and growing form of uterine cancer," says Schwartz, who is also assistant chief of obstetrics and gynecology at Yale-New Haven Hospital and director of the Ovarian Cancer Research Program in the Yale Cancer Center. The procedure more accurately determines the complete stage and appropriate treatment, and reduces the recurrence of the cancer, he explains.

The incidence of UPSC has increased since it was first identified in 1981. About 160 to 170 new cases per year are seen at Yale. UPSC is found in higher rates in African-American women than in white women. The disease microscopically looks like ovarian cancer and spreads just as rapidly.

"Until now, there has been no consistent management of the disease," says first author Dr. Michael G. Kelly, fellow and instructor in Ob/Gyn. "With this method, we've been able to see who needs additional treatment after surgery and who does not. By reducing recurrence, we are helping to increase the survival rates of women with this form of uterine cancer. Once the disease recurs, virtually no one is cured."

The team reviewed 74 stage-1 patients with UPSC who underwent complete surgical staging, or hysterectomy with removal of pelvic and para-aortic lymph nodes and fat pads, at Yale between 1987 and 2004. Cancer recurred in 43% of early-stage patients who did not receive chemotherapy, while in the 20% of patients who received platinum-based chemotherapy, there were no recurrences. About 14 patients were spared additional radiation treatment.

I guess my question here is how much chemo did they have?

Urrrrrrrrrrr, dang CANCER!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

So sorry for all of this for you. If you go back to my previous post on the treatments I received it may be the same Yale trial that they are talking about in your article. My gyn/oncl. took part in this study and he was from Yale. Please read my post of Nov 10. My prayers to you. It is a tough battle this chemo. I had to quit at 5. Mind body and soul back to you. Fight this!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Aw, Marge, with every side effect I get I worry that I will find myself in your shoes, refused more chemo or asked to choose between a long-lasting side effect and having my next round of chemo. Please remember that Peggy didn't finish her full 6 rounds and she's still NED after 2 years. And that Dianna is scheduled for 8 rounds, when you and I are scheduled for 6: This is NOT an exacting science! They are making it up as they go along. I've always thought that my onc was guessing at how much chemo I could tolerate when he scheduled 6 rounds, and would take me as far as my body allowed, even beyond the 6 if I was still okay. 3 may be as good as 6, and I'll bet 4 will be. Will you still do the external pelvic radiation? Maybe you could come back to the final rounds of chemo after that, in the 'sandwich' that Peggy had. That's still being kicked around for me, and I know the decision will be made based on how hard my body is taking the chemo.

I looked for the Yale study, trying to get an answer for your question of 'how many rounds'. I need to also go through the things I printed out back before I first met with my chemo onc. I printed out this same Yale Study, ready to advocate for an aggressive chemo schedule, and it may have the treament schedule on it. But I think Peggy is right that the Yale study is the treatment regime Peggy had. Anyway, online, here's what else I could find on this. (I was planning to look for this article anyway, for the woman with UPSC on the 'recurrent endometrial cancer' thread who opted NOT to have any chemo):

Division of Gynecology Oncology, Department of Obstetrics and Gynecology and Pathology, Yale University School of Medicine, New Haven, CT 06520-8063, USA. m.kelly@yale.edu

OBJECTIVE: Uterine papillary serous carcinoma (UPSC) is an aggressive form of endometrial cancer characterized by a high recurrence rate and a poor prognosis. Prior studies evaluating treatment of UPSC have been limited by small numbers of patients and inclusion of partially staged patients. The purpose of this study was to evaluate the efficacy of adjuvant platinum-based chemotherapy and vaginal cuff radiation in a large cohort of surgical stage I UPSC patients. METHODS: We retrospectively reviewed 74 stage I patients with UPSC who underwent complete surgical staging at our institution between 1987 and 2004. RESULTS: Stage IA patients were divided into two groups: patients with no cancer in the hysterectomy specimen (defined as no residual uterine disease) and patients with cancer in the hysterectomy specimen (defined as residual uterine disease). Stage IA patients with no residual uterine disease had no recurrences, regardless of adjuvant therapy (n = 12). Stage IA patients with residual uterine disease who were treated with platinum-based chemotherapy had no recurrences (n = 7). However, 6 of 14 (43%) stage IA patients with residual uterine disease who did not receive chemotherapy recurred. The 15 patients with stage IB UPSC who received platinum-based chemotherapy had no recurrences but 10 of the 13 (77%) stage IB patients who did not receive chemotherapy recurred. One of the 7 patients with stage IC UPSC who received platinum-based chemotherapy recurred and 4 of the 5 (80%) stage IC patients who did not receive chemotherapy recurred. Overall platinum-based chemotherapy was associated with improved disease-free survival (P < 0.01) and improved overall survival (P < 0.05) in patients with stage I UPSC. None of the 43 patients who received radiation to the vaginal cuff recurred locally, but 6 of the 31 (19%) patients who were not treated with vaginal radiation recurred at the cuff. CONCLUSIONS: Platinum-based chemotherapy improves the disease-free and overall survival of patients with stage I UPSC and vaginal cuff radiation provides local control. Stage IA UPSC patients with no residual uterine disease can be observed but concomitant platinum-based chemotherapy and vaginal cuff radiation (referred to as chemoradiation) should be offered to all other stage I UPSC patients.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

This is such a mess for us to try to muddle through..........where are the answers??? Another thing to consider... it may not be how many sessions of chemo we have, but how strong the dosage of the drugs in the chemo. Do you know what you are getting? God bless and guide your search.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I looked all through my paperwork trying to find out the dosage of the chemo I'm getting, so that Marge can compare it with what they are giving her. I couldn't find it anywhere, but my husband says that he checked my IV bag last time I had chemo, and that I was getting 300mg of Paciltaxel. He isn't 100% positive, but he thinks he remembers that the smaller bag of Carboplatin was 50mg. He was comparing what I was getting at that moment with what my chemo-buddy (with breast cancer) who comes EVERY Monday was getting at the same time, and I was getting 3 times as much Paciltaxel that day (although she may be getting other drugs on her other 2 Mondays we aren't together.)

So it sounds like Marge (& all of us) have some other options if our body is having trouble recovering from each chemo session. Perhaps we could take a SLIGHTLY longer break between chemo sessions, or perhaps we could have a smaller dosage each round and a more prolonged treatment schedule.

I want to add one one thing that I've considered in all this that I learned from the Ovarian Cancer Sisters on this Board. Ovarian cancer (OVC) is SOOOO recurrent that most of OVC patients treat it as a chronic condition, and accept re-occurance as a part of the disease. From what they are posting, they take chemo on-going, until their CA-125 drops to around 10 or lower and their CT-scan is NED. Then they are considered in remission and take a break from treatment and get on with their lives, with frequent CA-125 and CT-scan testing. If their CA-125 starts to rise or they lose their NED CT-scan status, they go back into chemo,...and so on. Soooo, knowing this, and knowing that UPSC at Stage III is considered every bit as re-occurrent as ovarian cancer, I tried to discuss this approach with my chemo onc as a possibility for me,..essentially 'saving' some of my body's strength for my first re-occurance by stopping chemo if my CA-125 came down to 10 and my CT-scan stayed NED. My oncologist cut that conversation off as soon as he saw where I was going with it, saying "We will NOT discuss re-occurance treatment as a factor in deciding your current treatment, except in our commitment to NO re-occurance. We are going all-out for a prognosis for you that does NOT include re-occurance." Re-reading the info that Marge posted, I can see why he feels it is so important that we shoot for a complete cure now; the prognosis after re-occurance of this cancer looks pretty grim. We cannot back off from our treatments if our body can tolerate the regime, certainly not in an effort to save some strength for the 2nd battle. We need to win the whole war in our first decisive battle.

Marge, I don't know if you are being asked to make a conscious decision, or whether your body is making that decision for you. I can't even imagine what I would do (or WILL do) when my time comes for this decision, and it would be sooooo tempting to take a break from treatment and feel good again. But please explore every option possible in your treatment, whether it be a lower dosage or a switch to external radiation, or a new 'chemo cocktail'. Your other new doctors may be able to quiet these scary new side effects (or concurrent conditions,..although I also think it's chemo-related!) and maybe let you continue with your treatments. If I can help with any internet research for you, or if you have any questions that I can carry to my chemo-onc on the 19th so that you get another opinion, please just ask. ((((Marge)))))

shortmarge
Posts: 296
Joined: Nov 2008

I will not be having external radiation. I am Stage IIA. My UPSC was completely removed during my first biopsy in the doctors office (oncol was stunned) but they found the CCC that was slightly touching my cervix after surgery. There was a debate as to whether to have me as Stage IB or IIA. What I've been reading there is not much difference as far as prognosis. She said it's not like I am battling a tumor that's why she feels three is plenty. I'm not sure if I agree. I asked her about it being like ovarian cancer and she said no, ovarian is much worse, they may have the same names but ovarian is worse.

I'm going to meditate tonight and have a little chat with God.

Mind, Body and Soul.

Hugs

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

I am a believer in prayers and angels my friend. I've been the recipient of both in the last year and I have seen miracles. I will send all my prayers your way and ask my angels to watch over you. i wish I could go through some of this for you. Please keep me posted on how you are doing. Thank you for helping me put my own crap in prespective. (((Giant Cyber Hug)))

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

And, yes, Marge, please remember that the re-occurance rate for me at Stage III-c is really much higher than for your stage, and that I have no choice but to be as aggressive as my body will allow me to be. You have a great CA-125 and a NED CT-scan, and the women posting on that 'recurrent edometrial cancer' thread did not initially have ANY chemo, starting chemo only AFTER re-occurance. 6 rounds of chemo isn't any "Gold Standard"; there IS no gold standard of treatment yet for UPSC. They're making it up as they go along. I think they throw at us all they think our body can bear, and hope. One day, 3 rounds of chemo may BE the Gold Standard for UPSC treatment; and UPSC survivors may be spared the neuropathy and other long term side effects of having had too much chemo. I will pray that God guides your decision and that it will be the right one. Pray on this, and then have confidence in your decision. Once it's made, I promise that we won't say anything to second-guess you or make you have doubts. We will all support your decision and cheer you on. I hope that you will continue to post here with us, even if you are out of treatment, and join Peggy on the other side of this journey, as one who fought the battle and won and is living NED!

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Marge , on the 5th , 3 days after chemo I told my husband something was going on with my eyes, like shattered glass or an old fashion kaleidoscope. I did not get a migrain either. The effect lasted a couple of hours.Haven't had it since the one time, never had it before chemo .After reading your post I will call it another lousy chemo SIDE EFFECT!!!!
Teresa

deanna14
Posts: 738
Joined: Oct 2008

I will be praying for you and hoping that God will guide you to make the right decision for you. I will also be praying that your symptoms or side effects, whatever they may be, will resolve and that you will soon feel better. I mirror Linda's sentiments, you will have my support whatever your decision and I do hope that you will continue to post with us. This board continues to make me feel as if I am not alone in this fight.
My next onc appt. is on Friday, so I will find out when I will be starting the chemotherapy journey.
Make angels watch over us all!
Hugs,
Deanna

shortmarge
Posts: 296
Joined: Nov 2008

Teresa, That's exactly what I told the doctor that it looked like I was looking through a kaleidoscope. She gave me a funny look, guess she doesn't know what a kaleidoscope is.

Thank you for your support. I'm feeling that reality is catching up with me; til now it all seemed like this wasn't really happening. It's really (excuse my language) pissing me off!!!! I will be around on this board for a long time, supporting all of you. We will all get through this.

Mind, Body and Soul.

Hugs

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Marge; MIND BODY AND SOUL

deanna14
Posts: 738
Joined: Oct 2008

I got the real scoop on the clinical trial today at my gyn/onc appt. Apparently there was a mix up which is a little unnerving. My doctors nurse practitioner is the one who discussed it with me. Evidently due to the UPSC, the staging on my surgery was done like ovarian cancer. When the nurse practitioner discussed it with me, she gave me the info on Avastin which is an ovca clinical trial. So, here is the endometrial ca trial GOG-0209 NCT00063999. Keep in mind that only 10% of endometrial ca is UPSC which is never mentioned in the information I read on this trial. What my doctor will prescribe outside of the trial is carbo/taxol every 21 days for 6 cycles. The clinical trial is randomized with carbo/taxol being 1 arm of the study. The second arm of the study is cisplatin, adriamycin and taxol given in 2 days rather than one, every 21 days for 7 cycles. A part of the study is to measure quality of life and toxity. Obviously 3 drugs are going to be more toxic than 2, right?
Anyway, the study coordinator is supposed to be contacting me and I will keep you posted as I have more info. I'm leaning toward not participating. If any of you have the time to take a look at this study, please share with me your thoughts. Also, if you have the opportunity to run it by your providers I would appreciate another point of view. If I don't want to delay treatment, then I need to make a decision by the 19th when I am scheduled for a chemo teaching session.
I am so glad to have you ladies to bounce these things off of. I would have been really freaked today if I hadn't been talking with you all and reading your posts. Initially when he told me I needed chemo, he said 8 cycles, now he is saying 6. That would have really concerned me if I didn't know that both of you were recommended 6 cycles.
I had lab drawn today with a CA-125, but of course I probably won't get the results until next week. I am scheduled for port a cath insertion on the 20th and CT scan on the 21st. Things are starting to get busy again. Hopefully, we can get this started by the last week of the month.
Oh, I also ordered a wig today, it should be in sometime next week. I'll have to take a picture with it on and post it so you can tell me what you think. I plan on wearing caps mostly, but wanted to have the wig for special occasions and when I go back to work.
Thanks for being there.
Hugs and prayer to all.
Deanna

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Deanna you have a lot to think about. Where is the best place to read about your clinical trial or is it best to keep searching and send you anything we find? Linda how is your dental going? Marge and Teresa are your eyes and those side effects doing better? You are all so quiet!! You are all in my prayers. When things get tough the tough get tougher,,,, this journey is rough but I know you are so strong. Put a fire under this horrible stuff!!
(FYI; Deanna If you are nervous about your CA125 results: They are able to get them done and give them to you the same day. They do it each time for me. I had to rant and rave for a bit, but now I get them within 3-4 hours. For my 3 month check ups I have my IV started in infusion, then they draw my blood for my CA 125 from that, use the same line for my scan and in 4 hours I have my oncologist appointment with all of my scan and CA 125 results. This to me is far less nerve wracking than having to wait days for any of the results. Less stress is always the answer and my Dr repects the fact that the waiting just isn't acceptable for me. )

deanna14
Posts: 738
Joined: Oct 2008

I noticed yesterday when she was drawing my blood that the lab slip was marked stat. I'm sure that the results were in the doctor's office yesterday late afternoon. He normally doesn't work on Fridays and was only supposed to be in the office in the morning. I suspect that he wasn't even there to get the results. I really like the way you have yours set up so that you do it all in one day and get the results. When I finish chemo and start my 3 month follow ups, I will have to try to get on a schedule like that. I like the way you say that... the waiting just isn't acceptable. I will have to borrow that line when I tell them how to schedule those follow ups.
I read about the clinical trial at www.cancer.gov. I did a google search on endometrial cancer clinical trials and found the cancer.gov site which led me to the clinical trial.
I would be happy to hear your opinions.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Deanna: If you scroll up to the top of this page and paste in the names of each of the drugs they are considering for you in this trial, one at a time, it will take you to posts across all cancers where people here are discussing their results and side effects. One of these drugs seems associated with increased neuropathy and the other with increased heart arythmias. Of course, these people have different cancers and the drugs were in combination with different other drugs. I personally don't like the sound of that "quality of life" justification for the study. Do they hint at an IMPROVED quality of life, or do they want to see if nerve and heart damage are 'quality of life' issues?? No, that can't be it; I am being too wary here. We need to keep an open mind, as these may be drugs that we all want to consider taking. Must you decide ON the 19th? I have a CT-scan on the 16th and see my oncologist on the 19th. If you can stall them 1 more day, I will ask my oncologist about these 2 drugs on the 19th. (Heck, I'm going to ask him on the 19th regardless, since I know you can change your mind! Just don't sign anything unless you are sure!) ((((Deanna))))))

Regarding waiting for the CA-125 results, I'm sure that you can call your oncology nurse and get your CA-125 during any regular business hours. I also always get mine 'same day drawn', usually about an hour into my chemo IV. (Although I do remember waiting for my CA-125s about a week when they were drawn at the regular hospital lab instead of at the chemo center.) And from home, they set me up with password-protected internet access to all of my blood work results, and I can go online and compare my blood work (CA-125's, white, red & platelets counts, etc.) from one chemo to the next. Please don't ever hesitate to call your chemo nurse about ANYthing. I'll bet I've called about something at least once a week since I started my chemo. They never make you feel bad for bothering them. They know how important and difficult it is for a cancer patient to stay positive and not worry, and their job is to reassure you and to get answers for you from your oncologist if you ask something they cannot answer.

I will do some more research for you, Deanna (for ALL of us, since this may be something we all want to consider!) Having your chemo calendar cut by 6 weeks must be tempting! ((((Deanna))))

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I found it online. Here's the link: http://clinicaltrials.gov/ct2/show/NCT00063999

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

DEANNA: I don't like it that you might be randomly put into the group that does not get Carboplatin as a part of your chemo. Scroll back up to that Duke study, since that really influenced my decision about my chemo. I know my reaction to reading that before I started my chemo was that I knew I WANTED carboplatin because it has been a tested/proven UPSC cancer-killer. On the plus side, this is a HUGE study of 900 women and you are coming in on Phase III, the safest time to join a clinical trial, since these trials are stopped if the people who get involved in Stage 1 or Stage 2 of the trial start having too much trouble or anything. But I don't like that this clinical trial is not "UPSC-specific", and that UPSC is not at all like the more common endometrial/uterine cancers, and that you run the risk of being in the 450 women that do not get carboplatin. Who am I to say, of course, I'm no oncologist. But if it were me, I'd want to know I was getting carboplatin.

I found another decsription of the trial at this URL that I think explains it better:
http://www.cancer.gov/clinicaltrials/GOG-0209

ONE ADDED THOUGHT: The group in this clinical that DOESN't get Carboplatin, DOES get Cisplatin, which is also a 'platinum'-based drug. So maybe my worries that you might not get Carboplatin are unfounded. I HATE not knowing things, and will keep searching to try and find a comparison of carboplatin and cisplatin. But it does look you would be getting some form of platinum chemo, and it is platinum chemo that the Duke study talks about working for UPSC. They may have used carboplatin in that study because that was what was available when the study started and cisplatin may be just as good or better. I just know that carboplatin helped to bring down my CA125s and that carboplatin is what Peggy took and she is NED.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I couldn't find anything specific to UPSC comparing these 2 platinum-based chemo drugs, but I did find studies comparing them for ovarian cancer, which may be relevant to Deanna's decision:

Safety and efficacy trials comparing carboplatin and cisplatin, especially in ovarian cancer, have shown that the two drugs have a similar efficacy profile. Carboplatin, however, is significantly less toxic than cisplatin. The total costs of carboplatin and cisplatin therapy, which include not only drug costs but all health care costs incurred in preventing and managing toxicity, therefore differ considerably. Thus, despite carboplatin's considerably more expensive cost per dose, when the total costs of treatment are considered, carboplatin treatment is certainly no more expensive, and in many countries may be less expensive, than cisplatin therapy.

Unfortunately, the neurotoxicity of combination therapy with cisplatin and paclitaxel can be unacceptably high. This was particularly evident in a recent study of paclitaxel 175 mg/m2 (3-h infusion) plus cisplatin 75 mg/m2, in which 16 (42%) of the 38 patients with gynecologic malignancies experienced grade 2 or higher peripheral neuropathy [161, 162]. This contrasts with the 13% incidence of grade 2 or higher peripheral neuropathy in GOG-111. As a result, studies are now under way to compare the effectiveness and toxicity of carboplatin/paclitaxel with cisplatin/paclitaxel. An initial phase I/II dose-intensification study by the GOG showed that the maximum tolerated dose (MTD) of carboplatin, when used with paclitaxel, a targeted AUC of 7.5, and the MTD of paclitaxel is 175 mg/m2 [79, 81, 163-165]. Among the 24 study participants with measurable disease, the overall response rate was 75%, the complete response rate was 67%, and the median survival time has not yet been reached after >60 weeks [81]. Owing to its platelet-sparing effect on carboplatin (dosed to achieve an AUC of 7.5), the 3-h infusion of paclitaxel (175 mg/m2) does not require concomitant use of G-CSF [81]. This regimen is also useful in the outpatient setting because of the ease of administration of the 3-h infusion [81, 166].

As the current platinum-based regimen of choice, paclitaxel plus carboplatin holds great promise in the treatment of ovarian cancer. A phase III study now being conducted by the GOG (GOG-158) is designed to compare the effectiveness of cisplatin or carboplatin combined with paclitaxel. In an effort to minimize the toxicity of cisplatin/paclitaxel, paclitaxel is delivered over a 24-h period. Ovarian cancer patients with optimal Stage III disease are randomized to receive either paclitaxel 175 mg/m2 (3 h) plus carboplatin (AUC = 7.5) or paclitaxel 135 mg/m2 (24 h) plus cisplatin 75 mg/m2. When the results of GOG-158 are mature, they should provide a more complete picture of comparative outcomes with carboplatin/paclitaxel and cisplatin/paclitaxel.

As the results emerge from recent studies in which carboplatin is optimally dosed in combination with other active agents, such as paclitaxel, carboplatin may well prove to be more active than cisplatin in ovarian and lung cancer and at least equivalent to cisplatin in other tumor types. Germ cell tumors remain an exception and are most sensitive to cisplatin. In combination with paclitaxel, carboplatin appears to have at least an additive cytotoxic effect. Because their toxicities are complementary, they can be administered together without exacerbating their individual toxicity profiles. This is often not possible with cisplatin, which has additive dose-limiting neuropathy. In contrast, paclitaxel appears to have a protective effect on thrombocytopenia, the normally dose-limiting toxicity of carboplatin. Furthermore, this highly active combination does not require the concomitant use of growth factors when paclitaxel is administered.

(That's a lot of medical jargon, but to me it says: stick with the carboplatin as it is less toxic combined with the taxol than combining cisplatin with the taxol. And for UPSC you need taxol and some platinum-based chemo combo! But hear out your oncologist and listen with an open mind. "Dr. Linda" recommends you skip the clinical trial. But I will support your decision, either way, Deanna, and never second-guess you.)

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

I'am also on 6 rounds of carboplatin/taxol.One round every 21 days. Not sure I mentioned that in the past. Good luck with your decision Deanna.
Marge, had the kaleidoscope effect again yesterday for about 2 hours. I was out shopping with my husband and it was very bright and sunny, it started as soon as I got in the house.
Linda,you are so amazing with all your information. I love your posts.....
Peggy, love posts from you too.. So nice to hear from someone who's been there..

deanna14
Posts: 738
Joined: Oct 2008

Linda, I so appreciate the input on the clinical trial. As I said, I will hear them out, but from what I read, I agree with you Linda. Really never thought about doing the comparison that you did, but it was very helpful. I asked for my oncs opinion, but it seemed he just talked around it but never answered it. I guess he really can't tell me what he would do. Anyway, what I got out of the conversation was that although UPSC is similar to ovca, that it is not ovca. He did express a concern about how long it might take to get a useful sampling of UPSC patient for the trial. I kinda took this as if he would come out and tell me what to do, it would be to skip the trial. The side effects of cisplatin, taxol and adriamycin must be pretty severe. I am scheduled for a MUGA scan, EKG and audiology consult in the event that I participate. If I decide against the clinical trial, which I probably will, then I will cancel them. Thank you again Linda for taking a look at that and giving me your input.
Wow, so much to pray about! I will keep you posted. I am scheduled for chemo teaching on the 19th, so it is best that I have a decision made before then. I guess I can change my mind up to the time they infuse the medications. I would still be interested in hearing what your oncologist says about it for future reference.
Teresa, I hope you are feeling well. You are so right, Linda is amazing. She is such an asset to our group here. She is very good at looking at all the angles. Am I correct in thinking you have had 1 cocktail so far? I am hoping I will make it through the full treatment with no postponements. Good luck to you to.
Hugs for a better day to all.
Deanna

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks for all the compliments. A huge part of the work I do involves internet research to find comparable programs and supporting statistics, etc., so I've gotten pretty good at being able to lay my hands on what I need online. And I've always been insatiably curious about just about anything that captures my interest. PLUS, if I'm looking up things online, I have a good excuse to continue to procrastinate about taking down my Christmas tree (still up!! oh, no!)

PEGGY: You asked about my visit to the dentist. Luckily, the 2 teeth that the 'bridge' was originally attached to weren't filed down or anything when the bridge was installed decades ago, and so those other teeth aren't compromised in any way if I leave the bridge out awhile. And the dentist said that, at my age, I don't need to worry about my teeth shifting if I leave that space open for 6 months or so. He wanted to buff off the old cement, but when I told him I would need to get an updated platelet count before he could do that, he decided the cement could stay on. The gap is really far back in my mouth and doesn't show, and I hated that bridge anyway. So we are going to wait until after all of my treatments are over, and implant a false tooth into the jaw in that space instead. That implant costs 5 times as much, and is considered 'cosmetic' and won't be covered by insurance, but I am still going for it. They don't give flouride treatments without a cleaning and I can't have a professional cleaning without bloodwork done, so I didn't get that either. It was kind of a wasted dental visit, but he didn't charge me. It's funny: he told me he 'steeled himself' before I came, worried about how ravaged I would look from the cancer, as he has been my dentist for over 30 years. He said he was relieved that I still looked like 'Linda'. I guess it can be a shock for some people. So far, 2 of my girlfriends cried when they first saw my bald head. Kind of insulting, and yet I know their tears are in empathy for what they think is just a horrible thing.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Deanna, had my fist round Jan.2, next round will be Jan.27th. Did not feel well for 6 days. Think I'am also still healing from my Dec.11th,hysterectomy. My pelvic bone still feels pretty sore.
Also have been stressed about my hair coming out. Still have it but I know not for long.
Yesterday and today have been really good days. Hope I stay this way till the next round.

deanna14
Posts: 738
Joined: Oct 2008

Linda, never the less, you are an amazing blessing to me. I am not very good at research, so you truly are a blessing to me. You see, I am up before the crack of dawn, thinking this through again. I need to just let it go until I hear from the ca research center with the info. I do not think I will participate.
Teresa, I am happy that you are having good days now post chemo. Marge and Linda could answer the hair question better than I. I want to guess that is was about 2 weeks after their initial treatments that they began to lose their hair. I might feel differently when the time comes, but I feel prepared for the hair loss. I ordered a wig on Friday and I cut my hair very short on Wednesday. I will probably have my hair cut again week after next, just mental preparation.
I'm going to try to go get some sleep. Hugs to all.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

DEANNA: Money shouldn't ever have to factor into a health decision this important, so I hesitate to throw this into your thought process. But be sure that your insurance will cover the added costs of you being in the trail (the additional testing you ordinarily wouldn't get, any drugs not considered the norm, etc.) Sometimes a drug company is picking up the additional cost of the trail testing as they try to get a newer drug into more common use, but you cannot assume this is the case. We call our insurance company ourselves with questions like that for advance knowledge that there may be a problem, and then get the hospital/clinic's financial department involved to get the definitive approval/disapprovals of insurance coverage. You know this from your Da Vinci surgery fiasco. The additional testing and post-treatment follow-up monitoring are the most attractive parts of being in the clinical trial, in my opinion. But not if you are personally picking up that tab.

One more thought in this decision: To me, the way they word it, it looks like the carboplatin/taxol combo is the NEWER of the 2 chemo cocktails, being formally tested against an older chemo cocktail strategy with the cisplatin. That also makes me lean towards passing on this trial. I hate to see you up and sleepless in the early morning hours, you poor thing. (((((Deanna)))))

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lindaprocopio
Posts: 2022
Joined: Oct 2008

Have any of you gone to one of the 'Look Good / Feel Better' workshops given by the American Cancer Society? I went today and it was really fun. I learned all kinds of ways to tie scarves into turbans and how to fill out my rapidly-thinning eyebrows. They suggested blush and lip colors I would never have tried and eye 'brighteners' I didn't know existed, and the new look was really pretty. But the best part was that they send you home with a big make-up kits worth several hundred dollars with really high quality makeup and moisturizers and goodies. You just call the American Cancer Society to reserve for one near you, DO it, if you haven't.

deanna14
Posts: 738
Joined: Oct 2008

I made a reservation on the 26th of this month. I'm glad to hear you had fun. I am really looking forward to it. Yeah! My wig should come in this Thursday and I heard they help you in learning how to style it.
My CA 125 from Friday was 9.9, so it is staying down, the first one was 11. I know it's not the always reliable, but I'm taking it as good news! My WBC is almost back to normal from radiation. Things are looking good.
Since I have to have chemo, I'm ready to get it started!
We have 1 week a year of annual refresher training at work and doc approved me to go this week. I went today and it felt wonderful to feel "normal". I kinda wish he would let me work when I feel well. He is just does not want me working during treatment, he says I need to relax and let my body heal. I think I might find somewhere to volunteer a couple of days on the week before chemo. I guess I'll get through the first cycle and see how I feel.
By the way, I have decided NOT to participate in that clinical trial. Those drugs are just to toxic and I just don't see the benefit to me. I had a message today from the cancer research center and they are sending me information and a consent form. How lame is that? They aren't even going to take the time to talk to me in person. It just doesn't feel right and I think if it was meant for me, I would have a better feeling about it.
So, I am going to call them and let them know. Hopefully by Monday when I do chemo teaching, they will give me a start date.
Linda, I am so glad you had fun today. Now I'm really excited to go. I was wondering how one learned to tie those scarves!

shortmarge
Posts: 296
Joined: Nov 2008

Linda, I'm glad you had fun. I have a couple of scarves and just can't seem to get them tied right.

Deannna, I'm happy you have come to your decision and all of your good news. It's nice to feel normal too!!!

I missed work yesterday. This chemo is catching up with me and I seemed to have a balance problem. I went on line to find more info on side effects. It does say that towards the end of you chemo treatments you will get more fatigued. So I took a really good nap. I'm heading out to the ENT doctor today to see if it is my ear causing the balance problem.

I have come to my decision and will be taking my last chemo treatment on Friday. I have read some places that four is a good target if you body doesn't handle the chemo well. I wonder if the doctors ever consider your height or weight when administering the chemo. You know like they do when the prescribe antibotics or any other drug. I am only 5'0"....

So many questions that we will never have answers to. Oh well, I guess that's life.

MIND, BODY AND SOUL!

Hugs

shortmarge
Posts: 296
Joined: Nov 2008

Just went to the ENT, he told me that I should have had a hearing test before chemotherapy. Yes, it can effect your hearing. My high pitch is on the boarder of normal, so far so good. It effects the high pitch. He said that I should have been seen after every treatment and if I have to go through chemo again he wants to see me before I start. He also said that cisplatin is the worst for effecting your hearing!

Wow, just another discovery in the journery!!!!

MIND, BODY AND SOUL

Hugs

deanna14
Posts: 738
Joined: Oct 2008

Marge,
What chemo drugs are you getting? I hope you start feeling better soon. I know you must feel some peace having made your decision. So did your doctor think that the imbalance is just a side effect of chemo?
They scheduled me for an audiology consult next week. I was under the impression that I didn't need to go to it unless I decided to do the clinical trial. I guess I should call and check before I cancel anything. I am scheduled next week for a MUGA scan, EKG, audiology consult and CT scan. The CT scan is my 3 month follow up, but I thought the others were for the clinical trial.

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lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm not sure a hearing test is standard,...although maybe it should be based on Marge's story. But I never had a hearing test, nor has it ever been mentioned. I'm curious if Peggy or Teresa had their hearing tested pre-chemo. Maybe I missed something important.

Some big decisions made this week, good ones I think. Congratulations and I hope you each feel peace and confidence in a well-thought-out decision.

I have a question you may be able to help me with: Have any of you ever read or been told by an oncologist of a genetic link or the tendency for UPSC to run in families? Something Peggy sent me that linked UPSC with breast cancer had me wondering about my grandmother (my father's mother- who had breast cancer),...and in turn worrying about my little grand-daughter (as I am HER father's mother!) If this runs in families, I would want my grand-baby girl to start having screenings earlier than at 50 years old, ya know. I hope I am worrying for nothing. Worry is probably too strong a word,..concerned is closer to how I feel.

deanna14
Posts: 738
Joined: Oct 2008

They ran genetic testing on the lymph node they took out that was malignant. My oldest brother had colon cancer, maternal grandmother had colon cancer, mother had breast and endometrial cancer. I am positive for Lynch Syndrome, which is a genetic link in colon and uterine cancer. Later, probably after chemo, I will be referred to a genetic counselor for further testing and counseling. So far, no on has said anything about UPSC being familial, just the it increases risk of having uterine of colon ca. I will get the opportunity at some point.

shortmarge
Posts: 296
Joined: Nov 2008

I had a genetic test when I found out I had cancer and it was negative. Made me feel better because I have a 17 year old daughter. But I did some research on Lynch Syndrome and worry for my daughter because my husbands paternal grandmother, paternal grandfather, paternal uncle all had colon cancer and his father died of stomach cancer which I understand is also linked to Lynch Syndrome. His grandfather died from the colon cancer and his uncles colon cancer met. to his lungs. He lived for 8-1/2 years with it and passed away last year. I'm going to see if they will test my husband.

The ENT did think the imbalance was due to the chemo and probably my ears. He feels that since I am not as bad as the first week after chemo that I should recover from it. I guess that is why they ask before your next chemo if you have any ringing in your ears.

Deanna, I am on carbo/taxol combo.

I'm off to the doctors today for my blood work and to see her. This in prep for chemo Friday. I have a 1 month check tomorrow with the rad. dr. tomorrow. I will be so glad when I don't have to go to the drs. all the time.

MIND, BODY AND SOUL

Have a wonderful day, hugs....

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lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks so much for the info on Lynch Syndrome; I never heard of it before. Of course I immediately did some research to learn more about it. I looked through all of my pathology reports and can't find any genetic testing or Lynch Syndrome testing of my malignant lymph node. Maybe they didn't bother testing me because those with Lynch Syndrome usually develop cancer at a younger age than 55 and so I was not considered a likely case, and my family has no history of colon cancer. Although I wish they had done the genetic testing so I can put that worry behind me or deal with it if the results were positive! One more thing to put on my 'questions' list for my pre-chemo oncology consult Monday! Thanks again. Makes me glad I had a routine colocoscopy and mammogram just prior to the whole cancer scare, and both were good.

I have a routine CT scan Friday and my 4th chemo round Monday, so I'll let you know how I make out. (fingers crossed for luck.)

deanna14
Posts: 738
Joined: Oct 2008

Linda, if you want them to do the testing, I'm not positive, but I seem to remember the doctor telling me that those tissue samples are kept for quite a while. They may still be able to do the testing. Good luck with your CT scan, I pray that all is good news and that your chemo on Monday will be a breeze.
Marge, thanks, I thought you were on carbo/taxol, but when you mentioned Cisplatin I was confused. I pray for you to an easy chemo session and recovery. It's your last treatment, I think when you feel better, you should have a celebration!
I asked a lady that I know who is a chemo nurse about the adria/cisplatin/taxol cocktail that is involved in that clinical trial. I guess cisplatin can be a lot harsher than carbo and she said adriamycin is just a very harsh drug. It has a max. dose you can receive in a lifetime and most people are not able to handle the side effects to get to max. dose. It can be very toxic to your heart. I've made the right decision for me about the trial.

deanna14
Posts: 738
Joined: Oct 2008

Last post came up twice for some reason. Anywho... I just found out that my first chemo treatment is next Tuesday after my port placement.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

I haven't had a test for hearing or Lynch Syndrome.. I'm concerned for my daughter and two grandaughters. Will have to ask my doctor when I see her on the 26th of this month. That's the day before my next chemo. Have any of you heard of a drink called Kombucha? My daughter-in-law was watching that new show "The Doctors" and they were talking about it.G.T. Dave began bottling Kombucha in 1995 after his mother's success from drinking it during her battle with breast cancer.My daughter-in-law bought me a couple of bottles, I really like it.
My cousin took this picture of me today so thought I'd post it. Hope you are all doing well.....

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hey, Deanna! Looks like your chemo will always be 1 day after mine, so we can 'hold hands' during the predictable 'aches' days and 'strange-taste-buds' days, and will both be at our high and low points of the cycles together, just as Marge and I were. Thanks for the idea on the Lynch Syndrome testing of my lymph node tissue; I'll see if that's do-able.

Teresa: I haven't heard of your new drink, but would suggest you call your oncology nurse if you're really drinking a lot of it. Lots of herbal things interfere with chemo, and I was advised to call about anything like that for an okay. Just have the bottle handy when you call to read them the ingredients. There's a strategy to chemo where you have to be careful about things that fortify your cells. As much as you want your body to recover from each chemo cycle, you DON'T want to be drinking or eating anything that fortifys your CANCER cells at the same time. I had to get the okay to even take a simple multiple vitamin. Have you called them about this vision thing? That's the kind of thing that warrants a call between chemo rounds or regular appointments. Please don't be shy about calling them. That's their job and your insurance is paying out a fortune for your treatment. And I know they would prefer you to call as soon as any new symptom occurs so they can deal with it right away.

deanna14
Posts: 738
Joined: Oct 2008

Next weeks treatment will be on Tuesday since this was the first chance that he had to put in my port. So I will have my port in first thing Tuesday morning and chemo treatment after it is in. So we will both have chemo on Mondays after that. I'm excited that my (knock on wood) last treatment will be the first week of May! I thought it was going to be more like July.
I was wondering which days after chemo seem to be the most difficult for you? Do you get the Neulasta injection after your chemo? If so, do you drive yourself to get it? My husband is concerned about being home with me. He is off on Mondays, but wants to be home with me when I am feeling bad. I have tried to reassure him that I will be okay while he is at work. He's had to use so much sick leave since my first surgery in July, that he is worried about having enough. His sister just lives 1 block from us and if I have an problems, she can be here in literally 2 minutes or less. If I need a driver to get my injection, I'm sure she would be happy to take me. My parents are in good health and they are happy to help, but we each live 30 minutes away from the hospital in opposite directions.
Anyway, just wondering what days I should expect to feel the roughest and if he should anticipate needing to stay home with me?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Done in May! YEA! My last chemo is early March, and then I have my 5 weeks of external rads and 3 weeks of internal, so we should BOTH be done in May!

I don't get Neulasta shots since my white count has been climbing back really good without it, and my chemo oncologist only gives Neulasta after rounds where your white count is getting low. So far I haven't needed it, so I can't speak to that, but Peggy can. My chemo onc said that when you get Neulasta when you don't need it, it causes bone pain because there is only so much room in that confined space for the white cells and if there are already enough white cells, the crowding can cause pain. But I will get Neulasta if my whites ever don't recover like they should. When you NEED Neulasta, it doesn't cause the bone pain.

Lots of people even drive themselves to and from chemo, although I appreciate the moral support of having a buddy there chemo-day to share the news of my 'counts' and to be there when I talk to my oncologist. But as far as your husband planning to take off on your predictable 'bad' days following your chemo treatments, I don't really think you'll need your husband home with you at all these first few rounds. (PLEASE Teresa, Marge, & Peggy jump in here if you disagree.) You'll know better after your first round of chemo, but I have never been so weak or light-headed that I was afraid to be home alone, even after 3 rounds. (I'm always chasing my husband out the door to shoot pool or get out and have coffee with his buddies, and I'm here lots of times alone.) If your husband has a limited number of 'sick days' left, he might be wise to save them for your last couple rounds of chemo, as the side effects get progressively worse. And having your sister-in-law so nearby,...I think you'll be fine. For Marge and I both, Days 4 & 5 after chemo were the worse as far as joint pain, and for me it was limited to night-time and only lasted a couple of days. You're gonna be surprised how GOOD you feel between chemos, Deanna, compared to how you are imagining it will be. You sailed through your radiation; I'm betting you'll do really good with chemo too.

deanna14
Posts: 738
Joined: Oct 2008

I think I will do fine, and I think once we get through this first round he will "chill" a little. He is just very protective right now and feels like he can't do enough to help me. Once we get through the first treatment and I am able to take care of myself, I think he will be able to go on to work and not worry so much. My SIL will be more than happy to hang out with me if I need her to and probably will anyway, just to visit.
I'm ready, I just need to get over this rotten cold I came down with yesterday. I started that Zicam as soon as it felt like I was getting the cold. It hasn't stopped it, but I think it could be much worse. No fever, just stuffy nose, sore throat and some sneezing. Hope it clears up before Tuesday.
Thanks for the input, it sure does help to have you girls around to bounce all these things off of. The way my onc talked Friday at my appt., he plans on giving the Neulasta after each treatment. Do you think it might be because I already had radiation and my white count is already slightly compromised? I will find out for sure on Monday when I go for lab and chemo teaching.
Hugs for strength to all...

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lindaprocopio
Posts: 2022
Joined: Oct 2008

That's what I was thinking; maybe they feel they've already compromised your white count with the radiation. And I met someone at chemo who has my same chemo-onc that gets Neulasta after every round, (young, with lung cancer) but she always gets a second round of chemo later that same week and then a 3-week break between the double-rounds. I think she gets Neulasta every time so that she can better continue her aggressive chemo schedule. And I know Peggy routinely got Neulasta after each chemo round. Maybe you just have better insurance than I do! By the way, I've read that some people learn to give themselves the day-after-chemo Neulasta shot when they have long commutes to their chemo center. I can't imagine giving myself a shot, but it may be an option.

Teresa: is your hair hanging in there? At about 18 days after my first chemo my hair started coming out, and I think it was about 18 days for Marge also. Please try not to be too bummed; you'll get used to it. But I don't know anyone that doesn't stare in the mirror and shed a few tears at first. (((((Teresa))))) You'll love how cool your head feels on the pillow and never having to shave your legs or armpits. But at first it is hard, even when you are not especially vain.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I forgot to add this comment: You want to have no other medications in your system prior to your chemo. I was told not to even take my vitamins the day before or day of chemo. So you may want to back off of the cold medicine after Sunday. If you have anything prescribed that you take for any chronic conditions, they should have given you instructions on whether you can take them on chemo day. If you are coughing a lot with this cold, you may want to ask the chemo nurses on Tuesday for a surgical mask, for the safety of your fellow chemo buddies. I never even gave that a thought when I was so sick with that cough, until I saw someone getting chemo near me reach for their OWN surgical mask when I was coughing. Now I bought a box of masks to wear to chemo if I am ever sick again like that chemo days, and to have handy if anyone visits me who is coughing. I think I used 2 since I got them, so this is no big deal. But I was embarrassed to be coughing around people whose immune systems were compromised and not being prepared. Also, many people get constipated by the chemo drugs (something I struggled with the last 2 rounds), so I suggest that you get some of that Sunsweet Plum Juice (so much tastier than prune juice) and have a little glass each evening, and get some Fiber One cereal to eat for breakfast, and do a little pre-emptive 'fiber-loading' before your chemo. And you want to get in the habit of being VERY well hydrated, drinking lots of water all the time, 64 ounces of fluid daily which is a LOT, but helps keep your veins, kidnies, and digestion good during your chemo. I was also told by the nutritionist to eat a little yogurt EVERY day to get that live 'good bacteria' into my body, as chemo can upset the balance of bacteria in your body and you want to help your system re-balance itself as quickly as you can. And I recently got some of the NO-Alcohol flouride mouth-rinse that they make for children to help keep my mouth healthy during this vulnerable time,...(just make sure it has no alcohol as alcohol can make mouth sores worse). I think this all is helping me get through the chemo. The only other thing I take beyond a One-A-Day multivitamin and Calcium Chew, is a 'Slow-FE' iron pill, and that is with my onc's permission just since last round when my platelet count dropped to 117. I think the key is to remember that what fortifies your body also may fortify your cancer cells, and so anything you eat or drink a lot of is worth running by someone on your chemo-onc team. I know that you are a fighter and will make yourself be a key member of your cancer-killing team, and do everything you need to do on your part. You need to make yourself EAT, and HYDRATE, and REST. I know you'll do that.

TERESA, PEGGY & MARGE: please add any tips you may have for our 'chemo newbie'. Thanks!

shortmarge
Posts: 296
Joined: Nov 2008

I bring my own big cup to chemo and put ice water in it. I also keep diet ginger ale around for the week after chemo so I drink that instead of taking a nausea pill. It works great for me.

My worst days are my 4th and 5th. I start on the evening on the 3rd day when my ankles start to ache. As chemo goes on fatigue is more common. I'm taking more naps this round then I did the last two. The doc says this is normal. I also do breathing exercises and stretch, I try to do this every night or in the morning.

I'm thinking you are getting the Neulasta shot because you are getting a port. I was told that having a port gives you a risk of infection and since I was only having six treatments they didn't recommend the port.

I'm off to chemo tomorrow so my thoughts and prayers will be with all on your chemo days. See how I will feel next week with having my dosage lowered.

MIND, BODY AND SOUL.

Hugs....

Oh, and the cool bold head on the pillow sure does help with the hot flashes!!!!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

sorry double posted..................

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Busy week for chemo. Deanna once you are done with your first session most of these jitters will go away. It really is not bad. The neulasta is good. I drove myself to the clinic and back for these shots, it had no immediate reaction. I thought I had a lot of bone pain from it, but now reading the reactions of the chemo aches from the other girls I think I had a normal reaction to all of it together. I also felt free to go to all of my childs and grandchildrens activities without getting sick. I had to learn to give myself shots when I had blood clots. I was wondering how it would go, but as soon as I did the first one... nothing to it. It really helped bring back a feeling of control over one more set back. When I had chemo I looked forward to the next 2-3 days alone at home. No one making food to smell, making noise or needing attention. It was great to ghost around by myself and enjoy what ever I felt like doing. Many of the people I knew doing chemo had to go to work so I felt very privledged to be home. Alone. When I rested I visualized the 'cancer vixen' and would put a bulls eye on it and shoot.... never missed!! Very primitive, but mind over matter!! Got em all. NED!! Linda and Teresa.... We will all soon be ready to join that club. My heart and prayers go with you all this week once again. Marge I know you made the right decision to try a lower doseage and fight again. Peggy (ps Deanna, when getting the neulasta shots within the 24 hrs... get them in your stomach. It sounds terrible, but it really is painless much less stinging than a shot in your arm. Really!!) Just wanted to add that we have a wind chill of -74 below zero here today. Glad this is not my chemo year to travel!! Hope this is not a double post something is weird on the site today.

deanna14
Posts: 738
Joined: Oct 2008

Thank you all for the tips. I will make use of them. I am only taking Zicam for the cold, never tried it before. Hopefully it will shorten the symptoms and I won't have the sniffles on Tuesday. I just asked the doctor about vitamins last week and haven't had the chance to pick any up yet. I will take your advice and stop taking anything on Sunday, at least until I can check with the doctor or nurses.
I also think I may ask if I can give myself the neulasta so I will only have to make the trip one day instead of 2. I have lousy veins, so I requested the port. I had a colonoscopy in October and they had to stick me 5 times, CT scan in Oct. stuck me 2 times. After surgery, I had 4 IV sites. I think the port will be a good thing for me. I pray for no infections!
I'm so glad you are all here. Your encouragement means so much.
Marge- praying for strength for you for tomorrow and for all of you.
Deanna

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Deanna: Sorry to hear you have had such a time with your veins. A port should help you with that. When I do my scopes (colon and esoph.) I do not use any of the meds. These tests are not hard to do with no meds. I can go there and can be out of there in just minutes each test. (Then just drive home.) Much easier on the body. It is so interesting to watch on the screen what they are doing and it is much easier to make decisions if awake. Many people do not understand that the meds are routine... we have a choice not to use them. This would also solve your IV problem... at least for these simple tests. It all helps. Once again good luck in chemo all. Peggy

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Marge, hope your doing okay after your 4th chemo and that it's not as bad as your 3rd one was.
Started losing my hair today. Everytime I run my fingers through it some comes out. I've already got my wig and a few turbans, guess I'm ready as I'll ever be for this.
Deanna, good luck with your port and I agree with Linda that you will more then likely be okay without anyone at home with you after chemo.I also thought the 4th and 5th days were the worst. Still,I was able to give my daughter a bath on those days, I just couldn't cook for about a week with my sense of taste and smell so out of whack.

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