Sharing husband's hospital chemo expe... - Advanced Prostate...

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Sharing husband's hospital chemo experience today during Covid-19

spouse21 profile image
17 Replies

I know some of you will want to know about what it's like to get chemo in a hospital now that Covid-19 is happening. Our community hospital is a satellite of Mass General. They currently have about four CV patients in ICU. The chemo center is in an attached separate wing. Here's how my husband's #8 Docetaxel infusion went down this AM--a delay of a week since the hospital cancelled last week's appt. as the hospital organized for CV-19.

--He arrived wearing a paper-type mask we'd had from a couple months ago when I thought I had a cold and bought a box. He also wore rubber gloves. The hospital does have masks, gloves, and protective gear.

--Partners, spouses, and I assume most personal aides cannot accompany the patient.

--A masked person greeted my husband at the front door and checked him in. Then another masked person in front of the chemo waiting room took his temp.

--Only two other patients were in the waiting room compared with the usual half dozen. (One patient had left his used mask lying on the table with the magazines!!!)

--Got blood drawn and was kept back there instead of returning to waiting room.

--Met with his oncologist, also masked, to discuss his case (see profile). (Prior to #7 three weeks ago, he had scans showing Docetaxel had kept mets "reasonably stable." ) He has developed some neuropathy, which MO's monitoring and had discussed with him earlier on the phone this week and this AM. She's lowered the Docetaxel to 75% of the full dose, which he received. Everyone inside the chemo suite administering the chem was fully covered per usual.

--MO will see him in three weeks to see how neuropathy is and decide that day whether to give him #9 at 75% dose. She'd like to keep him going, depending on how he does. He's willing to try more chemo provided neuropathy doesn't worsen or other side effects get worse--extreme fatigue. He asked about some liver "cysts," which had shrunken during Docetaxel, so assumption is he perhaps has liver mets--something MO is tracking.

His bloodwork is totally normal. From the get go, he was Gleason 9 with low PSA. He had low PSA throughtout four months on Zytiga only to learn he had a lot of mets, and Zytiga hadn't worked at all. So scans are the only way to track his tumors. He'll get complete scans again in June--another long day in a CV19 setting.

He thought the precautions seemed adequate. Who knows what the Covid-19 situation will be like in three weeks if he does proceed with #9.

I hope this is helpful to those of you who are wrestling with whether to continue chemo in a hospital setting. My guy decided to keep going--#7 and now #8 were up to him beyond the standard of care of 6 infusions. Everyone makes different calls.

Good luck to all of you. It's a pretty crazy time.

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spouse21
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17 Replies
AlanMeyer profile image
AlanMeyer

That was a very informative posting. Thank you.

Best of luck to the two of you for the future.

Alan

Tall_Allen profile image
Tall_Allen

Did he get Neulasta too? Any possibility to biopsy any of his metastases?

I usually accompany patients on visits a few times per week, but haven't been able to. :-(

Darryl profile image
DarrylPartner

Thank you for writing this post.

db1966 profile image
db1966

Good luck with the remaining treatments. I got neuropathy towards the end of my treatments and ended up going to specialist cancer massage that worked a treat.

JamesAtlanta profile image
JamesAtlanta

Thanks for sharing...very helpful! I have been very curious what the situation is like these days. Strange times...

Best wishes to you two!

James

spouse21 profile image
spouse21

Thank you all for your good wishes. I'm glad this was helpful. My husband did say the mood was pretty somber compared with previous infusions when there were wonderful volunteers and we could banter with the staff. This was less busy with fewer patients. Doug did get the Nuelasta, Allen, as well as Xgeva. When we asked Dr. Matthew Smith in Boston about a biopsy of mets back in October, he didn't seem keen on it. My husband can ask the local MO. I missed being able to go to the infusion appointment. I felt benched or something like that. We're all on the team. We've gotten pretty friendly with the staff. It makes me sad that they're reporting for work, keeping my guy going, but are in an environment where they're at risk every day treating people who may have Covid-19 but don't know it yet. I have bottomless admiration for their professionalism and courage.

j-o-h-n profile image
j-o-h-n

They're heroes................ I draw a pair of lips on my mask......... (big fat red ones)....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/04/2020 12:04 AM DST

Thank you very much. I’m deciding what to do to move forward. I’ve been treating PCa since 1991 and had a great ride. Now weighing my value to grown kids and grandchildren compared to costs to society and burning through their inheritance.

Garbonzeaux profile image
Garbonzeaux

I went to the infusion center in the hospital yesterday for my Lupron shot, and my observations were similar to yours. Same screening before entry, no companions allowed, etc. However, where I went, all the usual magazines and other reading material had been removed (seems wise), and the nurses in the infusion center were NOT wearing masks, which surprised me a little. I also had a blood draw in another part of the hospital, and everyone there had a mask.

Dalipup profile image
Dalipup

Thank you so much for this post. My husband is due for blood draw next week. Our local clinic where we would feel safe is closed so would have to go to larger facility in larger town. We called and they to!d is I would not be allowed to come in and that they would triage him, which I'm assuming means take his temp, etc. Your post helps us to understand this decision we need to make

Hawkwoman76 profile image
Hawkwoman76

To help prevent neuropathy while getting docetaxel, I wrapped my husband’s feet and hands in ice packs. I put two ice packs in a towel and them bound them to his feet and hands using that colorful stretchy tape. I think this really helped to keep his neuropathy down. However, this was before Covid-19. You say you can’t be by your husband when he’s receiving the treatment, so you wouldn’t be able to do the wrapping. I send you and your husband much love and healing energy!

spouse21 profile image
spouse21 in reply toHawkwoman76

Thanks for the good advice about the neuropathy, Hawkwoman. We've been doing all the ice procedures all along, but the neuropathy has developed anyway. Doug went in with the cooler of ice mitts, ice socks, etc. yesterday and managed it himself. He pushes himself to go running, tai chi, walking miles and miles to keep the circulation going but almost had a fall in the shower yesterday. His footing was slightly off due to the slight loss of sensation. We hope the neuropahty will go away, but I'm not sure how since he's getting additional chemo beyond the original six.

Hotrod65 profile image
Hotrod65

Also treated in Boston..my next clinic is May 5...I will have a Telehealth with my MO instead and my next infusion #48 of Pembrolizimab Keytruda will be on June 6 with my 6 month scans at same time..this will be total of 16 weeks since last infusion ..I'm currently in Complete Durable Clinical Remission NED, and they are comfortable going longer if needed?, Said he does not want me coming thru Hospital to clinic , but to use street direct to elevator to get processed, wear mask , glasses and Gloves as they now have 22 Covid patients...I'm fortunate my treatment can wait ..Stay safe

immunity1 profile image
immunity1

Thanks for sharing the experience. I am in an almost identical situation. Cycle 8 of 10 docetaxel, in 3 days. I also have moderate peripheral neuropathy and there is Covid19 lurking in the city where my therapy is administered. At this point I too intend to go for treatment, with maximum care; N95 face masks etc.

spouse21 profile image
spouse21

Anyone with advanced PCa getting radiation or infusions is between a rock and a hard place right now.

Bird8 profile image
Bird8

Hi Spouse21,

So sorry about everything you are going through. My husband has been going to appts solo too, it stinks. I love your analogy about being benched. That is exactly what it feels like. Mike starts his 3rd round of chemo tomorrow also going solo. Forgive me if this has been asked, but have they biopsied any of the new tumors? Speaking from personal experience, I am always concerned when I read that there is disease progression with low PSA. I would want the MO to rule out any chance that the cancer has morphed into small cell neuroendocrine pc. Most likely this will not be the case, but if it is, it may change the tx approach moving forward. Keeping you both in my thoughts and prayers.

Nikki

spouse21 profile image
spouse21

Thanks for your response, Bird. At some point, we'll ask the local MO about a biopsy of the mets. When I brought it up to our supervising MO in Boston, he didn't think a biopsy was called for. Right now my husband will be going on #9 in three weeks at 75% dose, then possibly two others, also reduced dose.. The Docetaxel has stablized his mets, but before he goes on to something else we'll ask again. Well, who know if I'll be part of that "we.",

Spouse21, benched!

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