IBC lounge: roll call, support and just a good place to hang out
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So...according to this PET/CT report all of my mets have now resolved (although I'm almost afraid to rely on it because the report says that it appears that my uterus has been removed and it has not, nor has any previous report mentioned that my uterus suddenly disappeared), seems that everything has responded completely to systemic treatment except this stubborn IBC recurrence which has grown substantially in two months, so my MO is again pushing for radiation. He's not in favor of more chemo when the problem is localized now and the IBC has been resistant to multiple systemic treatments, says there's no reason to put my entire body through the abuse of more chemo. When radiation is finished I'd go back on Herceptin and Perjeta for maintenance.
In more frustrating news, back in December I had asked to have genome sequencing to see what mutations I might have for possible clinical trials. I guess there was some confusion, instead of Foundation One or Caris they sent my tumor sample for Oncotype DX which only gives a recurrence score! I don't know why anyone thought that would be of any use when I was Stage IV de novo, I don't know why my insurance company approved and paid for it, and now I'm sure I'll have a hard time getting my insurance company to approve the test I actually wanted (both tests are very expensive). And on top of all that, the Oncotype DX report says that because my tumor is ER- the score isn't even valid, but I've had biopsies two separate times and both pathology reports say I am ER+. In case you were wondering, my Recurrence Score is 83 and my Distant Recurrence Risk is >89% haha!
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Lori...I'm just floored by your frustrating news. It's not your responsibility that some clueless person sent your tumor sample to Oncotype DX. The system failed multiple times here--the goof of sending it to the wrong place should have been caught by Oncotype itself AND your insurance carrier. I'm sorry...you just don't need this tangle in your thoughts right now!
My mom used to say that women shouldn't push heavy lawnmowers, it will make one's uterus fall out. Perhaps you've been doing yard work recently and ran over it with the mower without noticing.
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Lori, you are too nice! I would have screamed at the MO, demanded my uterus to be found immediately! He doesn’t sound very responsible. A responsible doctor / oncology office would have given you proper explanations of why the uterus ‘disappeared’, why ER status change (or wrong record), apologized for ordering the wrong test, and helped you getting the right test that you wanted. I don’t know whether I was just lucky, my MO would call me as soon as she found answers to my questions, alerted me immediately of any questionable test result and gave me suggestions of what actions to take. (My father was a MD and was trained by John Hopkins, later became a superintendent of a major hospital, and my brother is also a MD and a vice superintendent of a hospital, so maybe my expectations of doctors’ were set high...). But, you deserve to have a doctor to at least not detrimental to your QoL.
Maybe Cisco had really good insurance, United Health provided me an onco nurse to talk to me once a week and help me navigate insurance related issues with no extra cost. Although I found out the free survice by getting very frustrated from trying to get Xeloda, I didn’t realize Xeloda since it’s taken orally are managed by pharmaceutical arm and required different approval process. I kicked myself that I didn’t find the service sooner. I will suggest a call to your insurance company to see whether they have such service, and maybe they can also help you finding clinical trials.
You are in my prayers...0 -
Meh, I don't blame my MO for my missing uterus but it does make me wonder if he even read the entire report. I'd been lucky enough to have the same radiologist read my report since my dx until this time, he had the day off for his birthday so this time I had a new guy and it's the new guy (an MD, not a tech) who lost my uterus. It does give me concerns about the accuracy of the rest of the report.
I didn't get a copy of the reports (both of them) until I was leaving and read them at home so I didn't have a chance to discuss them with my MO. Next time I need to make sure I get the copy before I meet with him. I wonder how many people just take their doctor's word and don't ask for a hard copy of reports. I'm so frustrated about everything that I don't feel like dealing with any of it. Not to mention worrying about the co-pay of daily radiation for 6 weeks at the beginning of the year when my deductible has to be satisfied. Was lucky with Herceptin because the manufacturer picked up the cost of my co-pay - $2000 every 3 weeks - and it was minimal impact to me. I do have a care navigator through my hospital's health system (all of my doctors are affiliated with the same hospital), he calls to see if I need help at home or getting to treatment or coordinating appointments, I might dump the genomic testing problem on him. The tumor sample can't be more than 5 months old for most purposes, and we took extra samples specifically for this purpose, so I am mad. I've been told that I'm too ruthless and mean when I'm angry, so I'm trying to find my happy place before I start dealing with it.
Some days it's a real struggle to keep slogging through the crap.
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Lori, there must be times when you think you're acting in a medical soapie. But resolved Mets is good news and I'm hoping the rads will work on the IBC. You have been through the wringer, but hang in there. Don't worry about what people think, do whatever you have to do to get the quality treatments you deserve.
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loriCa, Sorry for the messed up reports and I hope everything will be cleared up soon! And Good news on the resolved Mets!
We are all entitled to be ruthless and mean when dealing with this cancer. Seriaously if they onlyrealize what we have to deal with everyday!
Sending you positive thoughts and hugs
M
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Lori, hope you find your happy place soon. You even thought of all of the good excuses for your MO and the questionable PET/CT report, you are so kind. Good to hear that you have a care navigator, I would dump everything on him, including your doubts on the PET/CT report. I am not sure your MO recommended your treatment plan entirely based on the report, but get a peace of mind will be good, and you have paid good money and suffering for it. I was given someone else report once at a cancer center, thank God my MO taught me to read the report and raise questions before I leave any office. She said it’s more efficient for the doctors also because the case is still fresh in their minds. For IBC, there is no time nor energy to waste, it’s just practical to do that. I am so sorry that you have the dramatic version, get very mad and tell them to fix the problems stat! They will not know they have a problem unless you tell them.
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Met with my RO today and she agrees that now is the time to do the radiation, so had the CT done, the molds made, got my tattoos and bullseyes and stickers in place, and I'm ready to go. I only have one shot at this, we're going to radiate the hell out of it and it's such a large area that I won't be able to have radiation again, so if the IBC comes back again and is still chemo-resistant, I guess I'll be out of options.
The scary part for me is that in addition to being highly chemo resistant, I've been reading that IBC is also highly radiation resistant.
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Well, Lori, you at least have a radiation plan. It is a roll of the dice, but that's been the story of your treatment to date. Radiation of my left chest and axilia was sold to me as necessary to "mop up" after the surgery and chemo. The chemo didn't achieve a pathologic complete response for me, in other words my tumor was still active. So I could see the point of radiation. I'm coming up five years since diagnosis. I'm really hoping the radiation will do the job for you.
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Lori, my breast and body have been NED below the neck for years now. I had whole brain radiation with spot treatment as well and am stable. Radiation can do a lot of good when for IBC. I hope the same for you.
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Myboobs I'd feel more optimistic about my ability to achieve NED if it wasn't so extremely aggressive. I just seem to have a super-charged version. As it stands now, in the 16 months since my Dx I've only been stable for two months, and probably wasn't even then. It spread so fast the first time that it made everyone's head spin and almost killed me. It's going into super-charged mode again right now. Even the SUV is showing dramatic increases - the uptake value was 22 in November (anything above 2 is considered malignant) and now is 27! If we had known it was going to be chemo-resistant and had radiated while it was still just in my skin last summer I probably would have had a decent chance of getting it under control, but a lump developed in September and now there are two large and fast-growing tumors. One is a painful lump under my arm that is making me miserable (that's the one my MO originally thought was a lymph node when it was smaller).
I know radiation is good for mop up or for palliative reasons on smaller spots, but I haven't been able to find any research about the success of radiation for something this extensive and fast growing when it's become chemo resistant. That's probably because most of the research focus is on Stage 3 IBC with the standard chemo/surgery/radiation treatment to prevent if from reoccurring, and someone who had radiation to that area at Stage 3 can't have it again if they progress to Stage IV. And I'm worried about the mets returning to the rest of my body because I have to discontinue the Herceptin for several months until radiation is completed.
I'm going into this with the mindset that it's for palliative reasons to relieve the pain and buy me some time,and if it actually wipes out the tumors I'll let myself be pleasantly surprised. My MO warned me in the beginning that my chances of ever being NED were practically non-existent so I try not to ever let myself hope for it, I don't want to set myself up for disappointment.
At least I'll be able to easily tell if it's working without the need for a scan.
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Hi Lori, not very familiar with IBC protocol but I think I have had radiation without stopping herceptin. You might want to check with your MO on that. I think they only stop my chemo.
Praying rads will work for you on this one
Minnie0 -
Both my MO and my RO separately have said we need to stop all systemic treatments while I am going through radiation in order to properly gauge the response. May have something to do with the fact that this isn't for palliative purposes on a small area of mets, or to mop up after chemo,
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Lori, I understand what you're saying when it comes to not getting your hopes up. I also did not go for infusions when having radiation or even surgery for that matter.
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Lori, we want to support you through this any way we can. Prayer, good vibes, and a place to vent honestly. A plan is in place with the radiation, so here's to success, pain relief, and pleasant surprises.
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I'm with sbelizabeth: support any way possible. vent, tell us how you are. we are here for you.
val
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Lori, I pray radiation will zap those stubborn buggers for you and bring you relief. Radiation & Xeloda concurrent plan was recommended for me by a well known IBC specialist due to the large rock wouldn’t budge after 6 months of aggressive chemo, in my case, it wasn’t for small spots nor mop up.0
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SB, Val, Leslie, thank you.
Leslie I am a little surprised to hear that you were on Xeloda for an aggressive tumor (or was it just stubborn?). When I looked into Xeloda, it didn't seem to be fast-acting enough to slow mine down and seems more appropriate when cancer is slow growing or stable. I'm assuming it was successful for you? Since I'm HER2+ I also have Kadcyla (T-DM1) on the table, which I think is my personal preference based on the TH3RESA results. And rather than 5 hours of infusions for three drugs (or 2 drugs by infusion plus an oral chemo) it would be nice to just have the one drug that combines a chemo with the Herceptin.
Since Xeloda and Tykerb are still the only chemo drugs that penetrate the blood/brain barrier I think I'd rather save it for later since being HER2+ I apparently have a 50% chance of the mets spreading to my brain. I know that Xeloda is often used to prevent recurrence in early stage breast cancer, but it doesn't seem to prevent brain mets in metastatic patients, only treat them once they occur. Would be a shame to waste that option now.
I'm just taking it day by day. Still waiting to hear that plan is in place and radiation is a go based on the CT scan. I was supposed to get a call in a few days, instead it's going to be at least a week before I hear anything (and yet another week goes by with no treatment), so I'm starting to get nervous that they may change their mind about it.
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Lori, I will suggest that you call them everyday, be the squeaky wheel. You got the super-charged version.... I feel your unease of not having systemic treatment. Hope they can give you an explanation that can ease your mind or provide you that option. Regarding Xeloda, I was told Xeloda was to sensitize the radiation and a chemo for TN. After DD AC didn’t work, then weekly carbo & taxol, though SUV of both main tumors reduced, MRI showed suspicious area remained 7cm. Yes, I would say mine was the stubborn type, after Xeloda/radiation (nasty burn!), 7cm area was reduced to just some cancer cells. Since I tolerated Xeloda well and didn’t like to go to infusion room, I chose Xeloda again among 3 choices after the surgery. The main point from the IBC specialist was IBC is aggressive, one treatment doesn’t get the fast response, try another treatment. Although mine was grad 2, they threw combo after combo at them, thank God the Xeloda/radiation combo did reduce the fire to little sparkles. So, for your super charged version, I hope they will provide you with more aggressive options.0
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Thanks for the info Leslie. I didn't catch that you're TN and I know that treatment can often be very different from HER2+. Standard for HER2+ is taxol/herceptin/perjeta with the H&P continued for maintenance until progression. Worked beautifully the first time but not this time. Interesting that Xeloda was used to sensitize you for radiation. If things continue to get worse after a couple weeks of radiation I am definitely going to discuss adding a chemo to the mix, I don't care about their need to measure results, I only care about stopping this beast. I'm fully expecting a nasty burn too since my skin is in bad shape as it is, wonder how that's going to play in to my ability to judge if things are improving or worsening.
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Lori, I don’t want to add to your worries... TBH, I was wondering about the same thing, how they are going to measure the response. However, I’m going to pray that those buggers got zapped and shrunk. In my case, the result was not known until the path report came in. The hard rock turned out to be massive scared tissue peppered with cancer cells refused to die. BTW, did you ever find out why the ER status change? I was wondering why your MO recommended a plan deviated from NEJM published guidelines for advanced HER2+ BC. ...”A endocrine therapy maybe added when the cancer progresses.” Maybe, I might have missed that and/or the cause of delay.0
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It's not considered a progression Leslie, it's a full-blown and fast-growing re-occurence of the primary IBC. I've been on HER2+ targeted treatment, my extensive mets resolved completely on that treatment and I tolerated it well so there was no need to add another drug to the mix at the time. Many women can stay on just Herceptin, or Herceptin and Perjeta, for years. If it had been progression, it would be handled differently.
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Hi Lori, how are you doing pain wise? I hope you will soon find relief with the rads. Sorry if it sounds ignorant which breast are they radiating? It’s not the one with the wound?0
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Hi Minnie, I'm prepared for the pain to get worse before it gets better. It is the same breast that ulcerated the first time. I don't have an open wound yet this time, but it looks and feels like it might break through any day. I have very fair skin so I know that radiation is going to be tough on me, and with the condition it's already in now (even my doctor winces at it and is constantly apologizing when she has to touch it for measurements etc) I'm sure it won't be long before radiation destroys the skin and it starts oozing and that's going to give me flashbacks of the nightmare I went through the first time. But it's my right side so at least no heart involvement, just lung and liver in the radiation zone. Although it's been creeping toward my left side, is already at my sternum, so this better stop it as fast as they are hoping.
I thought it was really funny that the doctor warned me that this could cause cancer! You're going to treat me with something that could cause the very same thing that we're trying to treat?
Besides, I'm already Stage IV, warning me about the risk of cancer is a joke at this point.Dry run is tomorrow.
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Lori, here's a tip. Ask your radiation oncologist about the protective plastic film with the trade name Mepitel. It's widely used here, but so so much in the US, for some unknown reason.
The film is placed over the area to be radiated before treatment and stays in place (more or less, it can be re-fitted) until rads are finished.
It made a huge difference to me and all those I've contacted who used it.
Don't let them put you off on this one, insist on it. All the best for the coming weeks.
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Thanks for that tip TT, I will ask about it.
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Cool. Why not call ahead and insist that they get it in for you.
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I took Xeloda during rads and can testify that yes, it does sensitize skin to radiation. I had a big radiation wound that didn't want to heal. After I fussed and insisted my RO ordered a hydrogel wound dressing for me that FINALLY got the wound healed. It's expensive and not standard of care, and I had to get creative for how to affix it to my torso, but it worked.
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Oh Lori! Your bravery amazes me! I just can’t imagine how they can radiate the same breast. Mine is all open wound right now and it’s starting to hurt/sting. I really wouldn’t want anyone touching it. I also remember the first time they radiated the same breast and it burnt. I thought it was worst than chemo! I was crying in pain every night. Yes it’s funny how I was just told that this could happen after wards. So we get cancer again from the cancer treatment.
Praying all goes well tomorrow.
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I will second that, Lori, your bravery amazes me!!! I pray that your dry run goes smoothly and they have all the things that will make you comfortable all prepared. Lori, as I couldn’t tell your primary IBC was under control for a year, I thought it was progression, sorry about that! ((Air hugs))... I was given bolus for the radiation, told to fridge it and use it to cool the radiation area, and some special lotion to keep the skin moist. The lotion is not cheap, a friend gave me her leftover unused tubes when my convered one used up. You might want to ask your care navigator.0
